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ICA Calling for Applications for Board of Directors
6/19/2015

Apply by: July 17, 2015

The Interstitial Cystitis Association (ICA) is calling for applications of knowledgeable, engaged, and inspired volunteers to fill up to four positions to lead, advise, and support the activities of the ICA by serving on its Board of Directors for a three-year term. The Board plays a leadership role in implementing strategic direction while securing funds to advance the ICA and its mission. Board members collectively represent a range of skills, experience, and expertise in the public, private, and non-profit sectors. ICA’s most critical needs are currently in the areas of finance/accounting, fundraising, development, philanthropy, and public/media relations. The Board meets four times annually of which at least one meeting is conducted in-person/face-to-face in conjunction with ICA’s annual visit to Capitol Hill.

To apply, please fill out the application, print, sign, and email it along with your cover letter and resume to Lee Bryan Claassen, ICA Executive Director, at lclaassen@ichelp.org by July 17, 2015.

Honor the Dads and Help Change Lives
6/19/2015

With Father’s Day on Sunday, June 21, there’s no better way to honor the dads and grandfathers in your life than with a donation to ICA. Your tribute donation will be a unique Father’s Day gift and will help change the lives of so many with IC. Give the men that influenced your life a gift that makes a difference today.

June is Men’s Health Month!
6/19/2015

Men’s Health Month is celebrated across the USA with screenings, health fairs, media appearances, and other health education and outreach activities. Women are twice as likely to visit a doctor for annual exams, and the purpose of Men’s Health Month is to raise awareness of preventable health problems and encourage early detection and treatment of disease among men and boys. This month gives healthcare providers, public policy makers, the media, and individuals an opportunity to encourage men and boys to seek regular medical advice and early treatment for disease and injury. Men’s Health Month builds up to Men’s Health Week, June 15-21, 2015 - celebrated each year the week leading up to and including Father’s Day.

New Voices of Hope! Only one more needed to reach our goal!
6/19/2015

How long have you been battling IC? How has it shaped your life? We want to know! Everyone has a story. Please share yours with others, and help ICA celebrate 30 years of support and hope by submitting your personal IC story. Read personal Voices of Hope stories. To commemorate our 30th anniversary, ICA would like to collect and publish at least 30 stories of hope, encouragement, and successful living with IC to inspire others. With 29 stories received so far, we are so close to our goal, so please submit your story to ICA so we may share it with others during this 30th anniversary of ICA. Be the one who puts us over the top!

Stories are being accepted from patients and healthcare providers, as well as family and friends of IC patients who have been affected by their IC. Check out the ICA Voices of Hope Blog to read previous entries. For more details, check out our Voices of Hope blog guidelines. Submissions may be shorter than the usual requirement – a paragraph or two is ideal, and don’t forget to send your photo with your blog submission. We’re excited to read and share all the stories! There are so many reasons to feel hopeful. Everyone has a story. Please share yours with others. You never know who you might help.

New Diet Recommendations for Interstitial Cystitis from Leading IC Dieticians & Doctors!
6/11/2015

Medical Nutrition Therapy Algorithm Published for Interstitial Cystitis

The Journal of the Academy of Nutrition and Dietetics published the first-ever, evidence-based medical nutritional therapy (MNT) algorithm for dietitians working with interstitial cystitis (IC) patients. Though the understanding of the mechanisms by which diet affects IC is limited, studies confirm a definitive relationship between certain comestibles (edibles) and increased symptoms of pain, urgency and frequency.

The influence of diet on IC has been gaining the attention of both physicians and patients. Treatment guidelines published by the American Urological Association include dietary modification as a first-line intervention. “In the 1970s, a PubMed literature search on IC revealed only 50 publications. Today, there are 2,800 peer-reviewed articles. However, the literature lacks practice information for dietitians,” noted co-author Barbara Shorter, EdD, RD, CDN. Known for her landmark research on the relationship between IC and comestibles, Dr. Shorter is Professor of Nutrition at Long Island University (LIU) Post, ICA Medical Advisory Board member, and consulting dietitian and researcher for patients with a range of urological conditions at the Smith Institute for Urology, North Shore-LIJ Health System.

“Unfortunately, the Internet is rampant with erroneous and anecdotal food lists for these patients, causing them to eliminate far more comestibles than necessary. These suggestions may affect nutritional status as well as decrease quality of life. In addition, previous information targeting dietitians did not employ the Nutrition Care Process (NCP),” said first-author Barbara Gordon, RDN, LD, former ICA executive director and the only dietitian who served on the IC AUA Guidelines Committee.

This manuscript introduces strategies leveraging the unique practice standards of dietitians. “By utilizing the NCP, the proposed MNT algorithm positions dietitians to both better care for those with IC and raise awareness among patients, healthcare providers, and the public about sound dietary interventions,” noted co-author Alessandra Sarcona, EdD, RD, Director of the Dietetic Internship for LIU Post.

“As is evident, IC is a condition very much in need of nutritional considerations—that’s why we include a dietitian on the Smith Institute multidisciplinary team. The MNT algorithm offers these colleagues an essential tool for best addressing the needs of this challenging population,” commented co-author Robert Moldwin, MD, FACS. Dr. Moldwin, who is a member of the ICA Board of Directors and Medical Advisory Board, is also Professor of Urology at Hofstra North Shore-LIJ School of Medicine and Physician in Charge at the Pelvic Pain Center, Arthur Smith Institute of the North Shore-LIJ Health System.

View the MNT algorithm on the ICA website: https://www.ichelp.org/ICDietPressRelease. View the abstract of “Nutritional Considerations for Patients with Interstitial Cystitis/Bladder Pain Syndrome” (published online ahead of print) from the Academy of Nutrition and Dietetics website: www.andjrnl.org/article/S2212-2672(15)00371-8/abstract.

The Development of a Questionnaire for Women with Chronic Pelvic Pain
6/11/2015

The University of Southampton in the UK is conducting a study aiming to develop a new questionnaire that assesses the impact of chronic pelvic pain (CPP) on women’s lives. The study is an online questionnaire which should take about 20 minutes to complete. At this time, the investigators are trying to recruit female participants only. All information provided by participants will be completely confidential and anonymous. The questionnaire will be designed specifically for women with CPP and aims to assess factors they consider relevant and important to them. It is hoped that a new chronic pelvic pain questionnaire will allow for more standardized comparisons between research studies and provide a means to systematically assess women-centered outcomes of interventions.

To participate, click here.

AUA 2015
5/29/2015

We’re back from a successful AUA 2015! For the second year in a row, ICA was part of the Urology Care Foundation’s (UCF) Patient Advocacy Hub – a separate central location for all patient advocacy organizations. ICA made over sixty new healthcare provider contacts and dramatically increased our visibility. ICA came away from AUA having noticed some common sentiments among most of the healthcare providers in attendance - they want answers as much as their patients. ICA is very encouraged by the increasing interest in and awareness of IC among urologists which appears to be helping decrease the time to diagnosis and proper treatment. In addition, while there aren’t currently any new treatments available, ICA feels optimistic by the current research and the prospect of future clinical trials.

A report of the research, and scientific findings will be available in next week’s eNews.

ICA AUA 2015 Meet & Greet
5/29/2015

ICA's meet and greet at ‪‎the AUA Annual Meeting was a great opportunity for providers, researchers, and ICA staff to network and catch up with each other. ICA Medical Advisory Board members Dr. Robert Evans and Dr. Robert Moldwin, ICA contributor Jennifer Fariello MSN, RNC, CRNP, and IC researchers Dr. J. Curtis Nickel, Dr. Dean Tripp (@DeanTripp) and Dr. Siobhan Sutcliffe were in attendance, as were other MAPP researchers. ICA gratefully acknowledges Imprimis Pharmaceuticals, Inc. for their support of the meet and greet reception.

View photos from the events here.

CDC Interstitial Cystitis (IC) Education and Awareness Program
5/29/2015

ICA is losing funding from CDC that has fueled critical work in IC education and awareness. Representing nearly 40% of ICA’s annual operating income, the CDC funding supported ICA’s website and the knowledge base of IC information resources available to you, including the healthcare provider registry and ICA Patient Forum. The funding also made a national billboard campaign possible, developed a continuing medical education program on IC for healthcare providers, and made an online tool available to help you manage IC-related pain. And it helped to defray administrative expenses associated with ICA’s patient support services provided by email and phone.

ICA is the only 501(c)3 non-profit, charitable organization that works solely for the benefit of the more than 12 million men, women, and children suffering with IC. Your financial support is critical to ICA’s continued advocacy and awareness work that IS making a difference with more research funding and faster diagnosis and treatment. You have the power to impact ICA’s future. With your help, ICA can continue its important work to make a difference in your life or the life of someone you know suffering with IC. No dollar amount is too small. We look forward to your help now.

Creating a Positive Patient-Provider Relationship Webinar WINNERS
5/29/2015

Thanks for all who viewed the ICA webinar Creating a Positive Patient-Provider Relationship. Those who registered or submitted questions were automatically entered to win a copy of the webinar presenters’ book You Don’t LOOK Sick!: Living Well with Invisible Chronic Illness. Congratulations to our winners! 

  • Julie K.
    Gladwin, MI
  • Betsy O.
    New York, NY
  • Elizabeth B.
    Hoover, AL
  • Amanda S.
    Fishers, IN
  • Nancy M.
    E Ryegate, VT
  • Tracy E.
    Stanfield, NC
  • Denise C.
    Riverton, NE
  • Jamie S.
    Akron, OH
  • Candace D.
    Commerce, MI
  • Kristie L.
    Knoxville, TN
  • Holly L.
    Rio Rancho, NM
  • Scott S.
    Tuttle, OK

The recording of this informative and helpful free webinar, is available in ICA’s Virtual Patient Education resource here.You can order a copy of You Don’t LOOK Sick! for yourself through ICA’s Amazon link. When purchasing through this link, a portion of your sale supports ICA.

Creating a Positive Patient-Provider Relationship Webinar Questions Answered
5/29/2015

Unfortunately, due to time constraints, Drs. Selak and Overman were not able to answer all questions submitted during the live webinar. However the answers to those questions are now available online.

ICA @ AUA
5/21/2015

ICA staff attended the American Urological Association (AUA) Annual Meeting in New Orleans, LA, May 15 - 19. The AUA Annual Meeting is the largest gathering of urologists in the world and provides unparalleled access to groundbreaking research, new guidelines and the latest advances in urologic medicine. We’ll soon provide you with a recap of what we learned and accomplished.

May is Bladder Cancer Awareness Month
5/21/2015

This May, and every May is Bladder Cancer Awareness Month. The Bladder Cancer Advocacy Network (BCAN) is observing the month with public awareness programs, increased education, and a greater emphasis on sharing the struggles of those diagnosed with the disease and their loved ones. Join BCAN this May and all year long to bring bladder cancer awareness to the forefront.

Ehlers-Danlos (EDS) Awareness Month
5/21/2015

May is Ehlers-Danlos Syndromes (EDS) Awareness Month. EDS is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. People with Ehlers-Danlos Syndrome have a genetic defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. For more information, visit the Ehlers-Danlos National Foundation website.

Making Your Voice Heard
5/14/2015

Thank you to all who lent your voice in support of the ICA’s advocacy efforts to support the IC education and awareness program at the Centers for Disease Control and Prevention (CDC). Calling or writing your two Senators and one House Representative, and posting on social media was critical and influential. Many of the offices we visited were already educated even before we arrived due to numerous calls and emails that beat us to the punch! If you contacted your legislators, ICA would love to know how you did so and what response you received. If you were not able to participate on April 28th, don’t worry – it’s not too late to make your voice heard. In fact, it’s good to keep up the pressure, so go ahead and contact your legislator today.

The National Pain Strategy (NPS) - Time for Action During the Public Comment Period
5/14/2015

We are at a crucial time in history for people with pain. The very first national strategic plan to advance pain research, education and treatment—The National Pain Strategy (NPS)—has been released for public comment for a short period of time. We need your voice NOW to make sure that the NPS is changed from words on a page to a reality for the millions of Americans who urgently need improved pain care! See the press release announcing that the Interstitial Cystitis Association has been working collaboratively with 16 other organizations as part of the Consumer Pain Advocacy Task Force specifically for this purpose.

The next step in this process is to urge the Department of Health and Human Services (HHS) to begin the important process of designating funding for NPS and developing a federal oversight body, so that HHS can quickly begin putting the Plan into action as soon as it is finalized and released!

There's less than a week remaining, so please take 5 minutes to help by sending a letter to HHS—we’ve done most of the work for you!

The following link contains a sample letter that you can personalize and send automatically through this online system. All you have to do is enter your contact information and click "SUBMIT." If you choose, you can also add a sentence or two about yourself so that your letter is not the same as everyone else’s. (Alternately, you can copy/paste the letter template below into your own email and send to HHS (ASH@hhs.gov or address listed below for U.S. mail).

Please take action now to influence the National Pain Strategy. This is a big deal for people affected by pain so please let us know if you send a letter and we’ll keep you posted on the progress.

Comments on the draft National Pain Strategy must be received no later than 5 p.m. EDT on May 20, 2015.

The draft of the National Pain Strategy can be read in full here.

ICA @ AUA
5/14/2015

ICA will be attending and educating healthcare providers at the American Urological Association (AUA) Annual Meeting in New Orleans, LA, May 15 - 19. The AUA Annual Meeting is the largest gathering of urologists in the world and provides unparalleled access to groundbreaking research, new guidelines and the latest advances in urologic medicine. We’ll periodically check in from New Orleans and provide you with a recap of what we learned and accomplished when it’s all over. Laissez Les Bon Temps Rouler!

World Inflammatory Bowel Diseases Day
5/14/2015

May 19th is World IBD Day. This year organizations in more than 40 countries across the globe are joining together in a unified effort to raise awareness about Crohn’s disease and ulcerative colitis in honor of World IBD Day. Efforts this year center around a global video campaign encouraging anyone impacted by IBD to share their story in a short video with the unifying theme of “United We Stand.” Worldwide, five million people live with Crohn’s disease and ulcerative colitis. Celebrate World IBD Day with us on May 19!

National Women’s Health Week
5/14/2015

The Office on Women’s Health, part of the U.S. Department of Health & Human Services, invites you to join in celebrating National Women’s Health Week, May 10-16, 2015. The goal is to empower women to make their health a priority. National Women's Health Week also serves as a time to help women understand what it means to be well.

Complementary and Alternative Medicine in Inflammatory Bowel Diseases
5/5/2015

About one-third of interstitial cystitis (IC) patients have irritable bowel syndrome (IBS). IBS is a functional bowel disorder in which abdominal pain or discomfort is associated with defecation or a change in bowel habits. The Crohn's & Colitis Foundation of America is hosting a webcast, Complementary and Alternative Medicine in IBD, featuring guest speaker Tasneem Bhatia, MD, that will review complementary and alternative therapies (CAM) used in conjunction with conventional treatments in inflammatory bowel diseases including Crohn's disease and ulcerative colitis. The webcast will be held on Tuesday, May 12th, 2015 from 2:00 PM -3:00 PM EST and is free.

The webcast can be viewed here.

Fibromyalgia Awareness Day 2015
5/5/2015

On May 12 of each year, people world-wide strive to spread awareness for fibromyalgia and other chronic pain conditions through events, online ventures, and personal efforts. National Fibromyalgia Awareness Day events extend throughout the world and through the month of May in an effort to raise awareness and funds to help further support those with fibromyalgia and/or other chronic pain illnesses. To learn more about National Fibromyalgia Awareness Day, visit the National Fibromyalgia & Chronic Pain Association (NFMCPA).

Interstitial Cystitis Association National Call-In Day
4/24/2015

Action Alert – Take action on April 28

Advocates from across the country are coming to Capitol Hill on April 28th to ask their Members of Congress to support the Interstitial Cystitis (IC) Education and Awareness Program at the Centers for Disease Control and Prevention (CDC). This program has enabled ICA to educate medical providers about IC to improve patient diagnosis and care, as well as provide a warehouse of resources for patients, their families, and their physicians. This program has supported these ICA activities for nearly a decade but CDC is reallocating the funds to a different program.

Lend your voice to reinstate the CDC’s IC education and awareness program by calling your two Senators and one House Representative, and posting on social media. Ask your legislators to tell CDC to resume support of the IC education and awareness program.

Read More

Creating a Positive Patient-Provider Relationship Webinar Now Available for Viewing
4/23/2015

Thanks for all who attended Thursday’s ICA webinar Creating a Positive Patient-Provider Relationship for making it a great success. If you were unable to attend, or would just like to re-watch, you’re in luck! The webinar is now available for viewing online. Once viewed, we’d appreciate if you would please let us know how we did by taking a few minutes to complete this brief survey: https://www.surveymonkey.com/s/DDDSYPL. Your feedback enables us to provide better programs for you in the future. Drs. Selak and Overman together wrote a book, You Don’t LOOK Sick!: Living Well with Invisible Chronic Illness, about their shared experience, which can be purchased on Amazon. Thank you!

Irritable Bowel Syndrome (IBS) Awareness Month
4/23/2015

April is IBS awareness month. About one-third of IC patients also have IBS, which is a functional bowel disorder in which abdominal pain or discomfort is associated with defecation or a change in bowel habits. Like IC, the cause of IBS is not understood, but many factors may contribute to symptoms, which vary from person to person. You can learn more about IBS by visiting ICA’s Irritable Bowel Syndrome page. For more on IBS Awareness Month, check out the International Foundation for Functional Gastrointestinal Disorders (IFFGD).

Sjögren’s Awareness Month!
4/23/2015

April is also Sjögren’s Awareness Month. Those with IC often have Sjögren’s Syndrome as a comorbid condition, though why is not known as research about the overlap of interstitial cystitis (IC) and Sjögren's Syndrome is very limited. However, studies are beginning to pop up in the clinical literature. And, the Social Security Administration (SSA) lists Sjögren's Syndrome in the Social Security Disability Insurance guidelines and highlights IC as one of many overlapping conditions experienced by people with Sjögren's.

To learn more about Sjögren's and IC, visit ICA’s Sjögren's Syndrome page, and if you would like to participate in Sjögren's Awareness Month, visit the Sjögren's Syndrome Foundation.

Pelvic Heath 101
4/23/2015

Beyond Basics Physical Therapy is providing a series of free educational seminars focused on pelvic floor muscle function, its relationship to efficient and pain-free bowel, bladder and sexual function and tools to help individuals reclaim their pelvic health and independence. All seminars will be held at Beyond Basics Physical Therapy in New York City and start at 7pm. A free Healing Pelvic and Abdominal Pain DVD will be given to first time guests, and $20 voucher for Beyond Basics Physical Therapy products will be given to individuals attending five seminars. Space is limited. To RSVP visit www.PelvicHealth101.eventbrite.com.

The seminars are on Tuesdays and run through April 28th and include:

  • March 17th: Something’s wrong with my what? – A review of pelvic floor muscle anatomy and its relationship to bowel, bladder and sexual function.
  • March 24th: Running to the bathroom, again – A closer look at urinary urgency, frequency, incontinence and painful bladder syndrome/interstitial cystitis.
  • March 31st: Why is pooping so difficult? – The role of muscle coordination, toilet posture and easy techniques to improve your bowel movements today!
  • April 7th: Pain & Sexuality: Is it all in my head? – No, it is not. Learn how sexual pain in men and women is highly correlated with muscle dysfunction.
  • April 14th: Women’s Only Session – No men allowed! A time to dig deep into the female anatomy, hormones throughout the life cycle and a safe space for Q&A.
  • April 21st: How does pregnancy and birth affect my body? – Learn about changes in the body and what you can do to improve recovery post-partum.
  • April 28th: Complimentary Medicine – Learn how acupuncture, yoga and mental health therapy can facilitate the healing process. This seminar starts at 6:30PM

ICA Capitol Hill Day
4/17/2015

In tandem with ICA’s Capitol Hill Advocacy Day, we’re issuing a call to action to the IC community to contact their legislators on April 28. Call and email your legislators, or you can also participate via social media by tweeting or Facebooking them or just posting encouragement about the hill day. We will provide you with messages that you will be able to share and instructions on how to contact your representatives. We’ll keep the community posted on Hill Day by periodically posting updates to ICA’s social media, too. Stay tuned!

Create Your Own ICA Fundraising Page
4/17/2015

If you want to help increase IC awareness, support research, and educate patients and healthcare providers, it’s now easier than ever. ICA has launched ICare, a new online fundraising tool that allows you to set up your own web page to tell your personal IC story and invite others to support ICA’s work in IC awareness, research, and education. Friends and family can make secure donations through your web page and receive an immediate email acknowledgement of their tax-deductible contribution. No filling out checks, no finding a stamp to mail it in, and no waiting to get a receipt. And they’re helping you support your patient advocacy organization and personal cause.

ICA owes special thanks to the first ten who have already set up their own donation pages and set personal fundraising goals.

ICA’s ICare pioneers are:

  • Kaye Caldwell
  • Michelle Crandall
  • Blair Davey
  • Michelle Griffin
  • Catherine Horine
  • Amy Lipson
  • Jessica Mason
  • Stacey Gili McFetridge
  • Nicole Mehall
  • Jo Moller
  • Alyssa Reynolds
  • Joyce Street
  • Barb & Eric Zarnikow


Will you be next?

Go to http://icare.kintera.org to learn more and find everything you need to set up your page and send emails to your contacts. Whether you are doing a walk, run, bake sale, or a virtual fundraiser for yourself or in honor of a loved one with IC, your fundraising efforts and support will make a difference. Help ICA reach its budget goal. Create your page today and invite your friends, family, and co-workers to participate!

It’s easy!

  1. Go to http://icare.kintera.org
  2. Personalize your web page with photos and a message sharing your personal story and connection to IC.
  3. Upload and send an email to your friends, family, colleagues, church members, neighbors, etc. Or send the link to your page in an email from your personal account. Drop a note in the mail for those that don’t have email addresses. Include your fundraising goal in your email and notes.
  4. Share your page link on your Facebook page with a short post about your personal experience and your fundraising goal.

We look forward to celebrating your fundraising success!

How Interstitial Cystitis Changed My Life
4/17/2015

Like so many, Ona Praderas Sanchez was in a great place in life and had everything going for her. Then out of the blue, IC entered her life. Read her story and what she’s learned about her body living with IC in her blog entry.

Creating a Positive Patient-Provider Relationship Webinar
4/10/2015

Join us on April 16, 2015 @ 7:00PM (EST) for an ICA webinar, Creating a Positive Patient-Provider Relationship, led by ICA Board member, Joy Selak, PhD, and her healthcare provider, Steven S. Overman, MD, MPH. Drs. Selak and Overman together wrote a book, You Don’t LOOK Sick!: Living Well with Invisible Chronic Illness, about their shared experience. This webinar will focus on how to find effective, supportive care and creating a positive patient-provider relationship. Registration is free. Those who register will automatically be entered to win a copy of You Don’t LOOK Sick! In addition, those who submit questions in advance will also be entered. Two ways to win, so register today!

Joint ICA-AUGS Grant Results
4/10/2015

ICA and the PFD Research Foundation, the American Urogynecologic Society’s (AUGS) Foundation, established a joint IC/PBS research grant in 2013. The first recipient of the grant, Dr. Melinda Abernethy of The Johns Hopkins University, in her study entitled, Measurable biological differences in the urinary microbiota and in the urinary cytokine milieu will correlate with symptom severity in women with IC/PBS, has found that urine samples from patients with IC/PBS may be associated with higher MDC and Interleukin 4 (IL-4) levels and were less likely to have lactobacillus compared to controls. Further research is needed to determine if the presence of lactobacillus in the urine protects against the development and/or progression of IC/PBS, and the relationship between the urinary microbiome and cytokine production.

ICHope Online Pain Management Tool
4/10/2015

No one knows you better than you! Check out ICA’s ICHope Online Pain Management Tool for help developing better control over your IC pain and improving your quality of life. This free interactive program — the first of its kind — is designed to help IC patients learn to better manage their IC pain by adopting healthy, positive behaviors to prevent or minimize pain and to cope with pain that does occur. In addition, it shows patients how to implement these strategies — at their own pace, when they are ready — to help manage pain from IC. ICHope was created uniquely for IC patients, who, along with ICA staff and experts in the community, were integral in the development of this program. Are you ready to manage your pain? To get started, visit www.ichelp.org/ichope and learn more about ICHope.

If you’ve already begun the process of managing or minimizing your IC pain using ICA’s ICHope Online Pain Management Tool, now is the time to finish what you started. Don’t forget to log in every 30 days to update your profile and take full advantage of the program. The next steps to greater understanding and relief are awaiting completion. In order to get the full benefit of ICHope, please return and continue your journey to healing and complete the next stage of the tool – you’ll be glad you did!

Endometriosis Awareness 2015
3/27/2015

Interstitial cystitis (IC) and endometriosis have been dubbed the "evil twins." Like IC, endometriosis affects girls and women. Also like IC, the cause of endometriosis is not known. To raise consciousness of this disease, March is Endometriosis Awareness Month. This event takes place across the globe every March with a mission to raise awareness of a disease which affects an estimated 176 million women worldwide.

To find out more about Endometriosis Awareness Month, click here.

The Worldwide EndoMarch is taking place on Saturday, March 28. For more information about the March, click here.

If you’re looking for Worldwide EndoMarch resources to share with others, many can be found here.

Endometriosis impacts so many lives, yet, like IC, public awareness needs to grow. Worldwide EndoMarch is providing this great fact sheet to educate the public.

New Social Security Ruling for IC
3/19/2015

The Social Security Administration (SSA) has replaced its 2002 ruling for establishing interstitial cystitis as a medically determinable impairment (MDI) and determining disability. The new ruling (SSR) takes into consideration descriptions of IC developed by the American Urological Association (AUA) and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The AUA and NIDDK information was not available when the prior ruling was published. The new SSR is more thorough and less ambiguous and may improve the opportunity for IC to be interpreted as an MDI.

In the new SSR, the following evidence can establish the MDI of IC:

  • A diagnosis of IC by an acceptable medical source who reviewed the claimant’s medical history and conducted a clinical examination;
  • IC symptoms, as indicated in the AUA and NIDDK descriptions; and
  • Medical signs or laboratory findings.

The new SSR also provides guidance in the following areas of adjudication:

  • Obtaining medical and other evidence;
  • Arranging consultative examinations;
  • Resolving inconsistencies in the evidence;
  • Evaluating claimants’ statements about symptoms and functional limitations; and
  • Using the five-step sequential evaluation process for determining disability.

The new SSR also acknowledges that IC patients may suffer with overlapping conditions. In the explanation of the evaluation process, it states that if the SSA cannot find that the claimant has an MDI of IC, but there is evidence of another MDI, the SSA will evaluate the impairment under the rules that apply for the other MDI. This may also assist those with debilitating overlapping conditions that are filing for disability to reach a favorable outcome.

Pelvic Health 101
3/19/2015

Beyond Basics Physical Therapy, LLC is providing a series of free educational seminars focused on pelvic floor muscle function, its relationship to efficient and pain-free bowel, bladder and sexual function and tools to help individuals reclaim their pelvic health and independence. All seminars will be held at Beyond Basics Physical Therapy in New York City and start at 7pm. A free “Healing Pelvic and Abdominal Pain” DVD will be given to first time guests, and a $20 voucher for Beyond Basics Physical Therapy products will be given to individuals attending five seminars. Space is limited. To RSVP visit www.PelvicHealth101.eventbrite.com.

Seminars include:

  • March 24th: Running to the bathroom, again – A closer look at urinary urgency, frequency, incontinence and painful bladder syndrome/interstitial cystitis.
  • March 31st: Why is pooping so difficult? – The role of muscle coordination, toilet posture and easy techniques to improve your bowel movements today!
  • April 7th: Pain & Sexuality: Is it all in my head? – No, it is not. Learn how sexual pain in men and women is highly correlated with muscle dysfunction.
  • April 14th: Women’s Only Session – No men allowed! A time to dig deep into the female anatomy, hormones throughout the life cycle and a safe space for Q&A.
  • April 21st: How does pregnancy and birth affect my body? – Learn about changes in the body and what you can do to improve recovery post-partum.
  • April 28th: Complimentary Medicine – Learn how acupuncture, yoga and mental health therapy can facilitate the healing process. This seminar starts at 6:30PM
University of Maryland Center of Excellence in Regulatory Science (M-CERSI) and Innovation Conference on Patient-Focused Drug Development
3/19/2015

On March 9, the M-CERSI Conference on Patient-Focused Drug Development, was held in Bethesda, MD. The conference included planning members M-CERSI, Food and Drug Administration, academia, and industry, and was open to patients, caregivers, and advocacy groups. It provided a forum for all patient-focused drug development (PFDD) stakeholders to gather for an open dialogue.

Topics covered included:

  • Definition of PFDD
  • Essential components that need to be included in successful PFDD
  • Current initiatives, such as those of the FDA, patient advocacy groups, and pharmaceutical companies
  • Challenges to achieving PFDD and methods to overcome those challenges
  • Recommendations on a plan of action that includes a description of stakeholders' roles to move PFDD forward

Individual presenters’ slides can be viewed here.

Loyola Doctors Use Acupuncture to Ease Patient’s Debilitating Pain
3/19/2015

ICA’s Pilot Research Program funds research that has real world applications and benefits the IC community. Here's an example of ICA-funded research in action. Dr. Larissa Bresler’s research into medical acupuncture is already helping IC patients! Read the article.

Mast Cells May Not Be The Best Biomarkers for IC
3/19/2015

Mast cells are a key component of the human immune system. When large numbers of mast cells are found in the bladder’s muscular layer, known as detrusor muscle, that could mean a diagnosis of bladder pain syndrome/interstitial cystitis (BPS/IC). However, an elevated number of mast cells could also indicate overactive bladder syndrome. To gain more insight, investigators used state-of-the-art methods to analyze mast cells in bladder biopsies from 56 patients with bladder disorders. They found that a high number of mast cells didn’t necessarily mean the patient had BPS/IC. In fact, they analyzed mast cells in a number of different ways, and found they couldn’t distinguish overactive bladder syndrome from BPS/IC without Hunner's lesion (the more common form of IC). They did, however, find a specific distribution of mast cells that seemed to be characteristic for BPS/IC with Hunner's lesions (the less common, often more severe form of IC).

St. Patrick’s Day Alternatives
3/13/2015

Are you looking to celebrate St. Patrick’s Day, but your IC won’t tolerate the traditional recipes? You’re in luck! Chef Daniel Norton has created a catalog of recipes specifically designed for IC patients. Try these delicious recipes, and don’t forget to wear your green!

And if you’re looking to decorate for St. Patrick’s Day, be sure you use ICA’s link to Amazon. ICA receives a portion of every purchase made through this special link, so the more you buy, the more you help ICA! The link can also be found on the ICA website here.

Online Support Community Latest Conversations
3/13/2015

Have you checked out ICA’s Online Support Community recently? There are new conversations such as "IC Diet Confusion," "Flare or UTI?," "IC and Testicle pain,” "Scared to eat" added daily. Join the free community and get support, advice, and understanding from nearly 1,000 fellow IC patients.

Endometriosis Awareness 2015
3/13/2015

Interstitial cystitis (IC) and endometriosis have been dubbed the "evil twins." Like IC, endometriosis affects girls and women. Also like IC, the cause of endometriosis is not known. To raise consciousness of this disease, March is Endometriosis Awareness Month. This event takes place across the globe every March with a mission to raise awareness of a disease which affects an estimated 176 million women worldwide.

To find out more, click here.

IC Puts Patients at Significant Risk for Anxiety, Depression, and Insomnia
3/13/2015

A group of researchers in Taiwan have found that some patients with bladder pain syndrome/interstitial cystitis (BPS/IC) seem to be prone to some disorders, such as anxiety, that could not be explained away by other potential causes. The main message of this study is that doctors and patients alike should be on the alert to catch potentially treatable conditions that may develop as a result of BPS/IC.

Visit the ICA Literature Reviews page to read more about the study.

Be on the Lookout - Support Group Survey
3/13/2015

Attention support group and former support group participants! In the coming months, the Interstitial Cystitis Association (ICA), working with ICF International, will be conducting a national evaluation of interstitial cystitis (IC) support groups. The goal of this survey is to gather information from IC patients (and their family and friends) about whether they attend IC support groups, why they do or do not attend, any ways that the support groups help IC patients manage their condition, and any ways that the support groups could be improved. We hope to use the feedback we receive to improve the support group experience for both leaders and participants and determine how ICA can provide these groups with enhanced support. So be on the lookout for notices about the survey in the ICA eNews. We value your feedback and can’t wait to hear from you!

First Meeting of the National Coalition of Chronic Pain Providers & Professionals
3/5/2015

The first meeting of the National Coalition of Chronic Pain Providers & Professionals (NCCPPP) was held on February 20 in Rockville, MD. NCCPPP is a network of health providers, professionals, and organizations dedicated to serving the chronic pain community. Its vision is of a nation where everyone with chronic pain receives optimum treatment, suffering is eased, and healing is routine. As a founding member of NCCPPP, ICA staff, including ICA’s Executive Director, Lee Claassen, and ICA Board member Gina M. Barbarotto attended and participated in this first meeting. Dr. Michael April gave a special presentation on how sleep disturbances contribute to chronic pain, and how they affect one another. Crucially, Dr. April stated that sleep disturbances are the most common complaint of his patients, and that chronic sleep deprivation – a widespread problem for those in chronic pain – can lead to hyperalgesia (increased sensitivity to pain). Importantly, Dr. April emphasized that his goal as a physician treating pain, and others who do so, is not to promise patients 100% relief of their pain, but rather to never give up on them.

For more information about NCCPPP, click here.

Society of Urodynamics, Female Pelvic Medicine and Urogenital Reconstruction Winter Meeting
3/5/2015

The Society of Urodynamics, Female Pelvic Medicine and Urogenital Reconstruction (SUFU) held its winter meeting in Scottsdale, AZ last week. During the meeting, a panel presentation on bladder pain lead by Drs. Linda Watkins, Catherine Bushnell, and Anthony Ford was conducted. In it, they presented their data on various aspects of the basic science behind pain. Some highlights from the discussion include:

  • Targeting glial activation for treating chronic pain and improving opioid efficacy by Dr. Watkins of the University of Colorado at Boulder. Her research has found that glial cells, part of the nervous system, can create and maintain enhanced pain, and that glial cell activation is linked to opioid tolerance, dependence/withdrawal, and opioid reward. Therefore, targeting glial cells may suppress opioid-induced respiratory depression and constipation as well as provide a novel approach to pain control and increase the effectiveness of opioid analgesics. What’s more, these findings could apply to more than just opioids as the effects of alcohol, cocaine, and methamphetamine are all also amplified by glial cells. If you’d like to see the application of this research in action, watch the news report about Dr. Watkins’s study.

  • Dr. Catherine Bushnell of the National Center for Complementary and Integrative Health presented The brain’s role in perceiving and modifying chronic pain. Using MRI scans, she has found confirmation of increased function in specific regions of the brain in both interstitial cystitis and vulvodynia patients. In addition, through MRI, she has discovered the resting brain state in patients with chronic pain disorders often is altered from normal controls. Interestingly, this data has shown that perceived severity of pain is not influenced by patient emotional status, but rather it affects the impacts of their pain. Furthermore, this research has shown that distraction from pain often diminishes the perception of the severity of pain. MRI findings of those in chronic pain have been shown to improve with distractions such as cognitive behavioral therapy and yoga.

  • Dr. Anthony Ford of Afferent Pharmaceuticals, Inc. presented P2X3 antagonism in treatment of interstitial cystitis and bladder pain syndrome. Initial animal studies with mice utilizing P2X to counteract P2X3 demonstrated hyperalgesia (increased sensitivity to pain) which allowed the bladder to fill to larger volumes. AF-219, a non-narcotic, non-sedating drug without addictive potential, is a first in class drug selective oral inhibitor of P2X3, which would possibly need to be taken twice a day in order to receive relief. Preliminary data of their randomized controlled trial for treatment of moderate-to-severe IC/BPS are planned to be reported at a later time.
Holistic Medicine vs. Homeopathy…Is There a Difference?
3/5/2015

Have you ever wondered what is the difference between holistic medicine and homeopathy? Look no further, because we have answers for you! The following article is brought to you courtesy of the National Center for Homeopathy.

Holistic Medicine and Homeopathy are vague, confusing medical terms that are often used interchangeably. But in reality, they are related, but distinctly different modalities.

Holistic medicine is an umbrella term used to describe a variety of therapies that attempt to treat the patient as a whole person. That is, instead of treating an illness, as you would in traditional Western medicine, holistic medicine looks at an individual's overall physical, mental, spiritual, and emotional well-being before recommending treatment.

A practitioner with a holistic approach treats the symptoms of illness as well as looking for the underlying cause of the illness. Holistic medicine also attempts to prevent illness by placing a greater emphasis on optimizing health – the body’s natural state is one of health. An illness or disease is viewed as an imbalance in the body's systems. Holistic therapies tend to emphasize proper nutrition and avoidance of substances—such as chemicals—that pollute the body.

There are no limits to the range of diseases and disorders that can be treated in a holistic way, as the principle of holistic healing is to balance the body, mind, spirit, and emotions so that the person's whole being functions smoothly. When an individual seeks holistic treatment for a particular illness or condition, other health problems improve without direct treatment, due to improvement in the performance of the immune system, which is one of the goals of holistic medicine.

Homeopathy is a type of holistic medicine, but has a distinctly unique approach compared to other types of holistic medicine, like naturopathic medicine or traditional Chinese medicine (eg. Acupuncture).

Specifically, homeopathy is a safe, gentle, and natural system of healing that works with your body to relieve symptoms, restore itself, and improve your overall health. It is extremely safe to use, even with very small children and pets, has none of the side effects of many traditional medications, is very affordable, is made from natural substances, and is FDA regulated.

Homeopathic medicines – known as “remedies” – are made from natural sources (e.g., plants, minerals), and are environmentally friendly and cruelty free. Most are available over the counter in grocery stores, drug stores, health food stores, homeopathic pharmacies, and online. They are also extremely affordable. Homeopathic remedies, when used as directed, are completely safe for everyone – including pregnant and nursing women, infants, children, and adults. They are given in such small doses that they don’t cause side effects.

Homeopathy is used to treat acute illnesses, like colds, ear infections, migraines, and sore throats, as well as chronic conditions, like asthma, depression, autism, and arthritis.

Anyone can learn to treat simple conditions safely at home using homeopathy, but a professional should treat serious or life-threatening conditions.

Learn more about homeopathy through the National Center for Homeopathy.

When Standard Treatments Fail
3/5/2015

Have you ever wondered what happens when you’ve tried every recommended treatment for IC to no avail? Don’t worry – there is hope for even the worst cases of IC. To learn more about what can be done when nothing seems to be working, watch When Standard Treatments Fail  from ICA’s 2013 Patient Forum. This webinar goes beyond clinical guidelines to get you the inside scoop from top IC doctors on what to do next when standard treatment options fail.

Introducing ICare
3/5/2015

If you want to help increase IC awareness, support research, and educate patients and healthcare providers, it’s now easier than ever. ICA has launched ICare, a new online fundraising tool that allows you to set up your own web page to tell your personal IC story and invite others to support ICA’s work in IC awareness, research, and education. Friends and family can make secure donations through your web page and receive an immediate email acknowledgement of their tax-deductible contribution. No filling out checks, no finding a stamp to mail it in, and no waiting to get a receipt. And they’re helping you support your patient advocacy organization and personal cause.

Go to http://icare.kintera.org to learn more and find every thing you need to set up your page and send emails to your contacts. Whether you are doing a walk, run, bake sale, or a virtual fundraiser for yourself or in honor of a loved one with IC, your fundraising efforts and support will make a difference. Help ICA reach its budget goal. Create your page today and invite your friends, family, and co-workers to participate!

It’s easy!:

  1. Go to http://icare.kintera.org
  2. Personalize your web page with photos and a message sharing your personal story and connection to IC.
  3. Upload and send an email to your friends, family, colleagues, church members, neighbors, etc. Or send the link to your page in an email from your personal account. Drop a note in the mail for those that don’t have email addresses. Include your fundraising goal in your email and notes.
  4. Share your page link on your Facebook page with a short post about your personal experience and your fundraising goal.

We look forward to celebrating your fundraising success!

NIH’s Dr. Collins Interview with Paul Basken of The Chronicle of Higher Education
2/27/2015

Director of the National Institutes of Health, Dr. Francis S. Collins was recently interviewed by Paul Basken of The Chronicle of Higher Education. In the interview, Dr. Collins spoke of better days ahead for NIH and medical researchers, largely due to President Obama requesting Congress allocate $31.3-billion to NIH in the 2016 fiscal year – a $1 billion dollar increase from its current funding level. That fact, and given advances in genetics and electronic medical records, he also feels that the timing is now right for the “precision medicine initiative” proposed by the president.

To learn more, watch the interview with Dr. Collins here.

If you’d like to learn more about what to expect from the Precision Medicine Initiative, listen to this interview with Dr. Francis Collins.

Endometriosis Awareness 2015
2/27/2015

March is Endometriosis Awareness Month! This event takes place across the globe every March with the mission of raising awareness of a disease which affects an estimated 176 million women worldwide. It is time to raise awareness of a disease that affects women – and their families – in their most (re)productive years!

To find out more, click here.

IC/BPS Quality of Life Survey: Understanding Symptoms, Pain and Psychosocial Factors
2/19/2015

IC researchers need your help! This Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) research focuses on understanding patients' life experiences. It is hoped that information from this survey will aid in the development of new symptom management strategies. This survey examines symptoms of IC/BPS (urinary and pain) as well as hope, mood, and support as it relates to patient quality of life. The investigators greatly appreciate your participation in this important study! Their goal is 1,000 participants and they’re nearly there, so if you haven’t participated yet take the survey now by clicking on the following link: http://queensu.fluidsurveys.com/s/ICBPSQoL

Hydrocodone 100 Days Survey
2/19/2015

The National Fibromyalgia & Chronic Pain Association (NFMCPA) is conducting a survey to learn about the impact new Drug Enforcement Administration (DEA) and Food and Drug Administration (FDA) regulations have on people who rely (or relied) on opioid pain prescriptions such as hydrocodone medications to control their chronic pain condition. The purpose of this survey is to see how the rescheduling of hydrocodone has affected patients with chronic pain. Responses will be used to determine how these new regulations are impacting access to hydrocodone medications for people who are reliant on these medications to help live with chronic pain, and the effects of pharmacists deciding not to fill prescriptions written by prescribers who are caring for their patients.

Completing this survey will take between 15-25 minutes, depending on your answers.

To take the survey, please click here.

Nationwide Survey Reveals Widespread Use of Mind and Body Practices
2/19/2015

According to a large nationally representative survey developed by NIH’s National Center for Complementary and Integrative Health (NCCIH) and the Centers for Disease Control and Prevention’s National Center for Health Statistics (NCHS), more Americans of all ages are using mind and body approaches to improve health and well-being. The complementary health questionnaire is administered every 5 years as part of the National Health Interview Survey (NHIS), an annual study in which tens of thousands of Americans are interviewed about their health- and illness-related experiences. The survey shows that natural product use in the United States has shifted since 2007, with some products becoming more popular and some falling out of favor. In addition, there has been a significant increase in the use of yoga since 2002, and nearly as many Americans practice meditation or receive chiropractic or osteopathic manipulation.

Read more about the use of other mind and body approaches and the use of natural products in the full report at https://nccih.nih.gov/research/statistics/NHIS/2012.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
2/19/2015

Last week The Institute of Medicine released its much anticipated report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Redefining an Illness.” In it, IOM makes four key recommendations:

  1. That the U.S. Department of Health and Human Services (HHS) develop a toolkit appropriate for screening and diagnosing patients with ME/CFS in a wide array of clinical settings in which these patients are encountered.
  2. Physicians should diagnose ME/CFS if diagnostic criteria are met, following an appropriate history, physical examination, and medical work-up. A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Edition (ICD-10) that is not linked to “chronic fatigue” or “neurasthenia” (emotional disturbance).
  3. The disease be renamed “systemic exertion intolerance disease” (SEID), noting that the term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used.
  4. Within 5 years, the diagnostic criteria set forth in this report should be re-examined when firm evidence supports modification to improve identification and care of patients.

The goal of IOM report is to make ME/CFS – or systemic exertion intolerance disease (SEID) – more readily diagnosable and for clinicians to consider it a serious condition.

For more details, and the full report, follow the links below.

Review of Cake
2/19/2015

Last month the film Cake, starring Jennifer Aniston, opened in theatres nationwide. It attempts to accurately depict the life of a woman struggling with chronic pain. If you’re considering seeing the movie, you may be interested to read this review of Cake, written by a woman who knows the realities of living in pain - Barby Ingle, President of the Power of Pain Foundation.

If you’ve seen the movie, we’d like to know what you thought about it. Email your own review of the movie to icamail@ichelp.org with “Cake” in the subject line. Please let us know if we have your permission to share your review in a future issue of the ICA Update.

ICHope Online Pain Management Tool
2/12/2015

No one knows you better than you! Check out ICA’s ICHope Online Pain Management Tool for help developing better control over your IC pain and improving your quality of life. This free interactive program — the first of its kind — is designed to help IC patients learn to better manage their IC pain by adopting healthy, positive behaviors to prevent or minimize pain and to cope with pain that does occur. In addition, it shows patients how to implement these strategies — at their own pace, when they are ready — to help manage pain from IC. ICHope was created uniquely for IC patients, who, along with ICA staff and experts in the community, were integral in the development of this program. Are you ready to manage your pain? To get started, visit www.ichelp.org/ichope and learn more about ICHope.

If you’ve already begun the process of managing or minimizing your IC pain using ICA’s ICHope Online Pain Management Tool, now is the time to finish what you started. Don’t forget to log in every 30 days to update your profile and take full advantage of the program. The next steps to greater understanding and relief are awaiting completion. In order to get the full benefit of ICHope, please return and continue your journey to healing and complete the next stage of the tool – you’ll be glad you did!

Valentine’s Day is Nearly Here
2/12/2015

Are you looking to spice up your Valentine’s Day or just for answers to your personal questions regarding intimacy? Visit ICA’s online support community where you can feel free to ask all those questions you’ve been afraid to ask. Get answers and recommendations from the people who know best – other IC patients. Our online support community has hundreds of other people experiencing similar symptoms, situations, experiences, and emotions. Check it out today!

Support for Locals in Pain - in the Land Down Under!
2/12/2015

There are people living with interstitial cystitis (IC) and chronic pain all across the world. Many chronic pain sufferers feel isolated and alone, and only other people living with chronic pain really understand what it is like. That’s why Norah Baldock, of Port Lincoln, Australia, decided to start a local support group for people, like her, who suffer with chronic pain. Read more about Norah and her support group here.

Did you know there are many regularly meeting IC support groups located throughout the US and around the world? These groups are open to all who wish to attend. Find out about a support group near you, or start one for your area.

If there aren’t any IC support groups in your area, be sure to check out ICA’s online support community.

Year-End Giving Results
2/5/2015

Thank you so much for your thoughtfulness and generosity this past November and December and for accepting the ICA Board of Directors’ $30,000 challenge match. Your outpouring of support for IC awareness, education, and research successfully met and surpassed the Board’s match and raised nearly 16% of ICA’s annual operating budget. We are very grateful and can’t thank you enough.

Ongoing donations are so very important to carrying out the work of any non-profit charitable organization. If you didn’t get a chance to donate to ICA prior to December 31, your financial support is always needed, no matter the size of the gift. Every dollar ICA receives throughout the year helps continue our important work on your behalf. Together we are conquering IC and changing lives.

Research Needs for Effective Transition in Lifelong Care of Congenital Genitourinary Conditions
2/5/2015

On February 2, ICA staff attended the National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK) workshop “Research Needs for Effective Transition in Lifelong Care of Congenital Genitourinary Conditions” on the NIH campus. The purpose of this meeting was to define research needs to help improve health and quality of care across the lifespan of adolescents/young adults with complex chronic conditions involving the genitourinary systems. Attendees were also given the objective of developing a recommendation for helping adolescents/young adults transition to independence and the adult health care delivery system. The one day meeting brought together patients, caregivers, social workers, behavioral, nursing and medical experts who provide care for adolescents and young adults with complex chronic conditions involving the genitourinary systems.

For more on this meeting please visit: http://www.niddk.nih.gov/news/events-calendar/Pages/Transition-Lifelong-Care-Congenital-Genitourinary-Conditions_02-2015.aspx#tab-event-details

IC Comorbidities Survey
1/29/2015

We want to make sure that we’re providing you with the most accurate and up-to-date information possible. ICA is gathering information regarding overlapping conditions (comorbid) for our upcoming issue of ICA Update, and would appreciate your assistance. Our mission is to hear what our constituents are telling us. Please take a moment to complete this short survey. Due to the high volume of responses to this survey, we won’t be able to contact everyone.

ICA at MAPP Steering Committee Meeting
1/29/2015

Last week ICA staff and Board Members attended NIDDK's Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Network Steering Committee Meeting in Baltimore, Maryland. MAPP was launched to help better understand the underlying causes of the two most prominent chronic urological pain syndromes - interstitial cystitis (IC) and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS). As one of only two patient advocacy organizations participating in the MAPP Steering Committee meetings, ICA has repeatedly encouraged the investigators to focus their continued research in areas that will translate into direct benefits for IC patients. Protocols for the five-year second phase of MAPP (MAPP II) have been finalized and are awaiting approval from the Network’s various Institutional review boards (IRBs). Recruitment will begin very soon! Because of the discoveries made by so many diligent investigators both in MAPP and other programs, there is hope for discovery of better treatments and an eventual cure for IC in the future. 

If you’re curious about the latest from MAPP, the first MAPP newsletter can be downloaded here.

NIH Pathways to Prevention Workshop: The Role of Opioids in the Treatment of Chronic Pain Telebriefing
1/29/2015

ICA staff attended the NIH Pathways to Prevention Workshop: The Role of Opioids in the Treatment of Chronic Pain in October. The final report of that workshop is now available. The findings and recommendations were explained in a telebriefing held last week, which was recorded and can be listened to at your convenience by following the instructions here.

The final report reflects comments from all sectors involved. In examining the evidence, the evaluators came to a few key conclusions:

  1. Opioids are less effective for treating fibromyalgia than for other conditions.
  2. Alternatives to opioid treatment are preferable for many chronic pain conditions.
  3. Their needs to be a change in healthcare provider prescribing behaviors.
  4. Those suffering from central pain syndromes (e.g. fibromyalgia) face greater risk of addiction, and opioids also don’t work well to treat such conditions. Therefore, the risks outweigh benefits.
  5. The longer a pain syndrome persists (chronic), the more resistant to opioid treatment the pain becomes.
  6. Large numbers of Americans are receiving suboptimal care.
  7. At the root of the problem is the inadequate knowledge about the best approaches to treat various types of pain.

The full final report, including the collective recommendations of the writers, is now available on the NIH website.

21st Century Cures Initiative: Accelerating the Discovery, Development and Delivery of New Treatments
1/29/2015

Last week, ICA staff attended the Biotechnology Industry Organization (BIO) 21st Century Cures Initiative: Accelerating the Discovery, Development and Delivery of New Treatments briefing. The 21st Century Cures Initiative has many aims, among them are:

  1. Patient-focused drug development.
  2. Modernizing clinical trials and drug development by expediting the development of novel therapies for serious and life-threatening disease, harnessing data sources and real-world evidence to advance the development of 21st century cures, and improving patient access to experimental therapies through effective expanded access processes.
  3. Focus innovation on unmet medical needs.
  4. Promoting and improving scientific and medical dialogue to enhance patient care.
  5. Preparing the FDA for the future.
  6. Encourage innovative therapies

If you’d like to read more about the 21st Century Cures Initiative, follow the links below.

#Cures2015

IC CME Program Now on MedScape
1/29/2015

Conquering IC: Identification and Management Strategies, an IC continuing medical education program, is now available on MedScape.

For healthcare providers, this offers AMA PRA Category 1 Credits and Continuing Education Credits for Nurses (ANCC).

ICA Online Support Community
1/22/2015

Do you feel like no one understands what it’s like to have IC? You are not alone. With a growing number of members, ICA’s Online Support Community is a great place of peace, hope, advice, and comfort for patients, family members, friends, and healthcare professionals looking for ways to better understand the impact of interstitial cystitis (IC). We invite you to join us in the online support community, where you can connect with hundreds of other people experiencing similar symptoms, situations, and emotions.

NIH Complementary and Integrative Health Agency Gets New Name
1/22/2015

The National Institutes of Health agency with primary responsibility for research on promising health approaches already in use by the American public, formerly the National Center for Complementary and Alternative Medicine (NCCAM) has a new name – the National Center for Complementary and Integrative Health (NCCIH). Support for the change was indicated during the public comment period in May and June 2014. However, while the center’s name has changed, its research priorities remain the same, and include the study of complementary approaches to manage pain and other symptoms that are not always well-addressed by conventional treatments. In addition, NCCIH also encourages self-care methods that support healthier lifestyles and uncovers potential usefulness and safety issues of natural products.

Panel Cites Need for Individualized, Patient-centered Approach to Treat and Monitor Chronic Pain
1/22/2015

An independent panel convened by the National Institutes of Health (NIH) found that individualized, patient-centered care is the best way to treat and monitor the estimated 100 million Americans living with chronic pain. To date, people living with chronic pain have generally been lumped into a single group, and the treatment approaches have followed in a similar fashion. However, there is little evidence to support this practice. Since every chronic pain patient is different, their treatment requires an individualized, multifaceted approach. To achieve this aim, the panel recommends more research and development around the evidence-based, multidisciplinary approaches needed to balance patient perspectives, desired outcomes, and safety. To read the NIH article in its entirety, click here.

ICA at Pain Care Forum
1/22/2015

Last week, ICA staff attended the monthly meeting of the Pain Care Forum to hear the guest speaker, Douglas C. Throckmorton, MD, Deputy Director for Regulatory Programs, part of the FDA’s Center for Drug Evaluation and Research (CDER). CDER is working to provide appropriate access to pain treatments for patients, including opioid drugs, and to reduce the misuse and abuse of prescription opioids. To meet those two goals, the FDA is working to improve drugs used to treat pain, specifically, abuse-deterrent formulations (ADF) of opioids, which are new classes of pain drugs that lack abuse risk. According to Dr. Throckmorton, the FDA is also working to advance the safe use of opioids through education of prescribers and patients, as well as supporting research into the best approaches to pain treatments, including opioids, and getting approval of the Naloxone autoinjector, used to treat opioid overdoses.

A representative of the Patient-Centered Outcomes Research Institute (PCORI) also spoke at the Pain Care Forum. She presented PCORI’s proposal, “Patient-centered Comparative Effectiveness of Long-term Opioid Treatment for Chronic Pain: Real-world Research over 20 Years and 200,000 Patients,” which seeks to:

  • Provide chronic pain patients, their healthcare providers, and policy makers with real-world, long-term clinical evidence to assess the risk/benefit of opioids and non-opioid alternative treatments to control pain over time.
  • Compare the pain control effectiveness of opioids over long periods of time to previous and alternative non-opioid medications and alternative treatments.
  • Compare the physical and mental health impacts of inadequately controlled chronic pain with the investigated treatment options.
  • Identify subsets of patients for whom the risk of negative outcomes related to opioids may be considered by the patient to be greater than the pain control benefit.
  • Measure the impact of new formulations and changes in policy/regulation on patient access to effective treatment.
  • Disseminate research findings to collaborating stakeholder groups, their networks, providers, health systems and regulators for use in care planning and policy making.

This research is potentially significant because it will be the first and only, real-world, longitudinal study of complete electronic health records, spanning 20 years, in a large population, to examine actual patient-centered, pain control and adverse event outcomes of long-term opioid treatments for chronic pain compared with alternatives.

ICA Welcomes New Board Members
1/15/2015

The Interstitial Cystitis Association is pleased to announce four new additions to its Board of Directors who will lead, advise, and support the activities of ICA for a three-year term:

Gina M. Barbarotto, MS, MBA, is an Associate Director in Patient & Professional Relations at Purdue Pharma L.P. She actively collaborates with numerous patient advocacy and healthcare professional groups around patient access and public policy issues and is a passionate advocate for people suffering with chronic illness. Gina uses her clinical background in medical technology and molecular genetics and experiences in marketing and pharmaceuticals to develop patient-centric resources and materials to improve patient-provider communications. She is inspired by her grandmother who suffered unnecessarily with painful comorbid conditions and did not have adequate resources to self-advocate and obtain quality care.  
 
Jane Elsten, MD, is an anesthesiologist who developed symptoms of IC after many years of clinical practice and was misdiagnosed for many years. After finally receiving appropriate treatment, though she had to cut short her rewarding career in medicine due to IC, Jane is now dedicated to networking within the medical community to increase awareness of and support for ICA. Her medical training and compassionate nature are assets to the ICA. Jane has two grown daughters and currently lives in McLean, VA.  
 
Barbara Hershberg, is an entrepreneur who started her own travel insurance company after being a substitute teacher, a public relations writer, and a sales representative, and after working with various charities. She received her diagnosis of IC after a year of intense pain and seven different doctors. Barbara’s experience with IC has calcified her dedication to aiding others with IC to get help, and to educating healthcare practitioners and the public about IC. She and her husband live in Vancouver, BC, and enjoy spending time with their grandchildren.  
 
Dan Vickery, MBA, PhD, has focused on urology and bladder pain for most of his career. He possesses extensive experience in pharmaceutical development and regulatory affairs, and was previously the head of worldwide commercial development for the therapeutic urology department of a major pharmaceutical company. Dan is currently the Chairman of a small biotechnology company seeking FDA approval for a new IC instillation therapy. Throughout his career, Dan has had the opportunity to meet many IC patients and their caregivers, and understands how devastating and debilitating the condition can be. Dan’s credentials and passion for overcoming IC make him an invaluable addition to the ICA Board of Directors.  
 
IC/BPS Quality of Life Survey: Understanding Symptoms, Pain and Psychosocial Factors
1/15/2015

IC researchers need your help! This Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) research focuses on understanding patients' life experiences. It is hoped that information from this survey will aid in the development of new symptom management strategies. This survey examines symptoms of IC/BPS (urinary and pain) as well as hope, mood, and support as it relates to patient quality of life. The investigators greatly appreciate your participation in this important study! To take the survey, click on the following link: http://queensu.fluidsurveys.com/s/ICBPSQoL

Newly Formed Consumer Pain Advocacy Task Force Needs Your Help
1/15/2015

ICA has joined the newly formed Consumer Pain Advocacy Task Force (CPATF). In March 2014, 16 organizations formed the CPATF to unite around one goal – to work collectively to promote, support and monitor the implementation of the National Pain Strategy (NPS). Learn more about the NPS and how you can be involved by clicking here. ICA will keep you informed along the way and ask for your involvement at critical moments. Stay tuned and be ready to take action. We expect the NPS Report to be released for an open public comment period soon and will send you an action alert at the right time so you can join thousands of others living with pain to speak out in response.

The following beliefs guide our collective work:

  • Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions.
  • Chronic pain is an unrecognized and under resourced public health crisis with devastating personal and economic impact.
  • Effective pain care requires access to a wide range of treatment options.
  • Allowing people to suffer with unmanaged pain is immoral and unethical.

In the meantime, please read and share this information sheet with others—your family, friends, healthcare providers and community.

Thank You for Supporting ICA
1/15/2015

Thank you so much for your thoughtfulness and generosity in 2014! We are busy processing donations and will be able to report on the results of the ICA Board of Directors’ $30,000 match in the near future. Your support enables ICA to give hope and a connection for others with IC - together we are changing lives!

On behalf of the ICA Board of Directors and the entire ICA staff team, we wish you the happiest of new years and the very best throughout 2015!

ICA Holiday Hours
12/18/2014

We’re here for you! We’ll be answering our phone and email inquiries during the holidays, but there may be a longer response time due to limited staff availability. We appreciate your patience and understanding and we will get back to you as soon as we are able. Happy Holidays!

30 Voices of Hope Celebrating 30 Years of ICA
12/18/2014

Join ICA in celebrating 30 years of support and hope by submitting your personal IC story. To commemorate our 30th anniversary, ICA is collecting and publishing at least 30 stories of hope, encouragement, and successful living with IC to inspire others. We’ve received 13 submissions to date. There are so many reasons to feel hopeful. Read the latest stories here.

We still need at least 17 more. Stories are accepted from patients and healthcare providers, as well as family and friends of IC patients who have been affected by their IC. For more details, check out our Voices of Hope blog guidelines. Submissions may be short – a paragraph or two is ideal. We’d love your photo with your submission but are happy to keep your identity anonymous if you prefer. Everyone has a story. Here’s your chance to be an inspiration to others. You never know who you might help.

Say ‘Thank You’ to Your Healthcare Provider through ICA
12/18/2014

Looking for a way to thank your healthcare provider this holiday season? Make a donation to the Interstitial Cystitis Association in their honor. Contributions enable us to advocate, provide research funding, and educate to ensure early diagnosis and optimal care with dignity for people affected by IC. We’ll send your honoree a letter to let them know about your tribute.

Thank you for your continued support of ICA. We wouldn’t be able to provide patient support, education, and research without your generosity!

Take Control in the New Year
12/18/2014

There’s no better time to begin taking control of your life than in the New Year. ICHope is a free, web-based tool to help you manage and cope with IC pain. We know your pain is unique and it is difficult to control your environment when trying to manage your pain. ICHope is designed to help you adopt healthy, positive behaviors to prevent or minimize pain and to cope with pain that does occur. In addition, it shows you how to implement the strategies — at your own pace, when you are ready. ICHope was created uniquely for IC patients, who, along with ICA staff and experts in the community, were integral in the development of this program. To get started, visit www.ichelp.org/ichope and learn more about ICHope.

Giving Tuesday Thank You & Update
12/11/2014

We are so grateful for the donations you gave to ICA on Giving Tuesday. In a single day, $5,730 was raised, and all because of you. It is through the generosity of individuals like you that we are able to continue supporting those with IC and working towards a cure. Thank you!

If you haven’t already done so, there’s still time to donate to ICA between now and the end of the year. Thanks to pledges and donations from the ICA Board of Directors, all gifts made by the end of the year will be matched dollar for dollar up to $30,000! Let’s exceed the goal! 

30 Voices of Hope Celebrating 30 Years of ICA
12/11/2014

Join ICA in celebrating 30 years of support and hope by submitting your personal IC story. To commemorate our 30th anniversary, ICA is collecting and publishing at least 30 stories of hope, encouragement, and successful living with IC to inspire others. We’ve received ten submissions to date. There are so many reasons to feel hopeful. Read the latest stories here.

We still need at least 20 more. Stories are accepted from patients and healthcare providers, as well as family and friends of IC patients who have been affected by IC. For more details, check out our Voices of Hope blog guidelines. Submissions may be short – a paragraph or two is ideal. We’d love your photo with your submission but are happy to keep your identity anonymous if you prefer. Everyone has a story. Here’s your chance to be an inspiration to others. You never know who you might help.

IC/BPS Quality of Life Survey: Understanding Symptoms, Pain and Psychosocial Factors
11/20/2014

IC researchers need your help! This Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) research focuses on understanding patients' life experiences. It is hoped that information from this survey will aid in the development of new symptom management strategies. This survey examines symptoms of IC/BPS (urinary and pain) as well as hope, mood, and support as it relates to patient Quality of Life. We greatly appreciate your participation in this important study! To take the survey, click on the following link: http://queensu.fluidsurveys.com/s/ICBPSQoL

ICA Board Will Make Your Donation Go Twice as Far on Giving Tuesday!
11/20/2014

All gifts made on Giving Tuesday or before the end of the year will be matched dollar for dollar up to $30,000 thanks to pledges and donations from the ICA Board of Directors!

Giving Tuesday! inspires personal philanthropy and encourages bigger, better, and smarter charitable giving during the holiday season, showing that the world truly gives as good as it gets. The third annual Giving Tuesday will take place on December 2, 2014 and will bring together diverse networks of people, large corporations, small businesses, and nonprofits to encourage and amplify small acts of kindness in the service of changing our world for the better. Donate to ICA this Giving Tuesday. No gift is too small!

Have You Taken Your Giving Tuesday Unselfie?
11/20/2014

Selfies are everywhere these days (For those of you who don't know, a selfie is a picture you take of yourself with your cell phone - often to post online). For Giving Tuesday we want YOU to take Unselfies - pictures of yourself with a message about who you are supporting on #GivingTuesday and why. It’s a show of support for Giving Tuesday! So, on Dec. 2, share why you're giving to ICA. Download, print, and customize your #UNselfie statement here: www.ichelp.org/GivingTuesdayUNselfie.

30 Voices of Hope Celebrating 30 Years of ICA
11/20/2014

There are so many reasons to feel hopeful. Read the newest personal Voices of Hope stories. Everyone has a story. Here’s your chance to be an inspiration to others. You never know who you might help.

Join ICA in celebrating 30 years of support and hope by submitting your personal IC story. To commemorate our 30th anniversary, ICA would like to collect and publish at least 30 stories of hope, encouragement, and successful living with IC to inspire others. So far, we’ve received eight submissions. Read the latest stories here. We still need at least 22 more. Help us celebrate ICA’s anniversary and reach our goal!

Stories will be accepted from patients and healthcare providers, as well as family and friends of IC patients who have been affected by their IC. For more details, check out our Voices of Hope blog guidelines. Submissions may be short – a paragraph or two is ideal. We’d love your photo with your submission but are happy to keep your identify anonymous if you prefer.

Say ‘Thank You’ to Your Healthcare Provider through ICA
11/20/2014

Looking for a way to thank your healthcare provider this holiday season? Make a donation to the Interstitial Cystitis Association in their honor. Contributions enable us to advocate, provide research funding, and educate to ensure early diagnosis and optimal care with dignity for people affected by IC. We’ll notify your honoree about your tribute.

Encourage Others to Say ‘Thank You’ (and Support ICA)!

Patients: Let your healthcare provider know about this opportunity to help support ICA. Send them this ‘how to say thank you’ sign electronically or print it out and give it to them at your next appointment. Encourage them to post it in their office or waiting area.

Healthcare Providers: Let your clients know they can say ‘thank you’ by supporting ICA. Post this downloadable ‘how to say thank you’ sign in your office or waiting area.

Thank you for your continued support of ICA. We wouldn’t be able to do what we do without generosity!

Donate Now!

Nutrition in IBD: Making Healthy Choices
11/14/2014

For IC patients that also suffer with IBD, we thought this free webcast might be of interest to you: The Crohn's & Colitis Foundation of America will be hosting a free webcast/teleconference on nutrition in inflammatory bowel diseases next Thursday, November 20th from 8:00-9:15PM (EST). IBD flare-triggering foods and using diet to complement conventional treatments of IBD are just a few of the topics slated for discussion.

To register for this informative event, click on the following link: http://registerrmei.azurewebsites.net/registration.aspx?id=10071

National Family Caregivers Month
11/12/2014

November is National Family Caregivers Month. ICA salutes all the millions of family caregivers nationwide who every day altruistically provide loving and dedicated care for their family members in need.

International Pelvic Pain Society Annual Meeting
11/12/2014

ICA staff attended the International Pelvic Pain Society Annual Meeting from October 23-25 in Chicago, IL. ICA was there to advocate for IC patients and to learn the newest developments in IC and pelvic pain research. Below you’ll find summaries of the sessions attended by ICA staff.

The Role of Resilience in Chronic Pain

In this session, Dr. Afton L. Hassett stated that understanding the nature of pain can help people better understand the connection between resilience and pain. She highlighted five very important points about the nature of pain:

  • Thoughts, emotions and pain are all neural events processed by some of the same areas of the brain,
  • Damage/tissue injury can be optional in the experience of pain,
  • Psychological, affective (emotional) and attentional processes are associated with the experience of pain,
  • Living with pain has tremendous consequences including, potentially, greater risk for morbidity and mortality.
  • Pain is much, much more than simple stimulus and response.


Dr. Hassett also cited the numerous studies linking negative affect (sadness, fear, anger, loneliness, etc.), to key factors in chronic pain, such as higher clinical pain intensity, higher pain report, worse weekly pain, Hyperalgesia, poor quality of life, and poor self-efficacy for pain management. Since negative affect, pain, and cognitive control activate a common region of the brain, Dr. Hassett believes that positive affective variables in many cases are more powerful predictors of health outcomes than negative affective variables, and that positive affect was the only significant predictor of persistent symptoms. Unfortunately, positive emotions are diminished in chronic pain, therefore, according to Dr. Hassett, it makes sense to consider boosting positive affect in patients with chronic pain conditions.

Some suggestions for enhancing resilience:

  • Keeping a Gratitude Diary
  • The Gratitude Visit
  • Write Three Good Things
  • Intentional Kindness
  • Savoring a Beautiful Day
  • Distraction decreases pain
  • Concept of “Flow” (the mental state of operation in which the person is fully immersed in what he or she is doing by a feeling of energized focus and full involvement)


Pain Sensitivity and Psychosocial Factors in Female Pelvic Pain

Dr. Meryl J. Alappattu presented her research on pain sensitivity and psychosocial factors in female pelvic pain. It was found that local and remote pain sensitivity, psychosocial factors, Dyspareunia (painful intercourse) and sexual dysfunction all often overlap to create pelvic pain. In her study, Dr. Alappattu hoped to identify differences in psychosocial factors, local and remote pain sensitivity, and sexual function in pain-free women compared to women with pelvic pain, and to identify the associations between intercourse pain, sexual dysfunction, psychosocial factors and pain sensitivity in women with pelvic pain. Despite being inconsistent with previous studies, she found a lack of pain sensitivity differences between the two groups, and deduced that the reason for the lack of differences can be attributed to:

  • Elevated psychosocial factors and relation of dyspareunia to local and remote pain perception.
  • Different types of stimulus.
  • Use of psychosocial measures to screen and evaluate treatment effects.
  • Clinical use of quantitative sensory testing
  • General diagnosis of pelvic pain as inclusion criteria.
  • Did not screen for pelvic floor muscle pain.
  • Potential differences between specific conditions (i.e. vulvodynia v. endometriosis v. myofascial pain).

New Perspectives from the Integrated Systems Model: Treating Women with Pelvic Girdle Pain, Urinary Incontinence, Pelvic Organ Prolapse

Diane Lee, BSR, FCAMPT, CGIMS spoke about treating women with pelvic girdle pain, urinary incontinence, pelvic organ prolapse. She found that twists in multiple regions of the abdominal canister – an area that contains the abdominal and pelvic viscera and is bounded by many structures – may over time lead to pelvic girdle pain, stress urinary incontinence, urgency, loss of fascial support for pelvic organs, pelvic organ prolapse, failure to respond to strength and endurance training, and thus to frustration and lack of patient compliance with treatment. For treatment, Ms. Lee suggests releasing and aligning the entire trunk, then training optimal recruitment strategies (re-wire the neural networks), then training for strength and endurance.

Opioid Therapy in Chronic Pain Conditions: A Call for Sanity

In this session, Dr. R. Norman Harden presented his recommendations for using opioids to treat chronic pain conditions. In light of the more strict regulations recently implemented, Dr. Norman provided five pieces of advice for prescribers:

  1. Do the necessary research to answer all the outstanding questions.
  2. Educate physicians about the risks.
  3. Educate patients about the risks.
  4. Prescribers either police themselves, or the government will.
  5. Enter into discussions about who should properly be caring for complicated chronic pain cases.

A Non-Urologic Approach to Urologic Pelvic Pain

Dr. Jeannette M. Potts had worthwhile guidance for her fellow healthcare providers engaged in the treatment of urological issues. She advised that even minor changes in one’s approach to treatment can lead to both patient and job satisfaction. Dr. Potts recommended taking time to ask a few extra questions and taking a few extra steps or maneuvers during physical exams to ensure optimal outcomes for the patients.

30 Voices of Hope Celebrating 30 Years of ICA
11/7/2014

Help ICA celebrate 30 years of support and hope by submitting your personal IC story. To commemorate our 30th anniversary, ICA would like to collect and publish at least 30 stories of hope, encouragement, and successful living with IC to inspire others. So far, we’ve received seven submissions… we still need at least 23 more. Help us celebrate ICA’s anniversary and reach our goal!

Stories will be accepted from patients and healthcare providers, as well as family and friends of IC patients who have been affected by their IC. Check out the ICA Voices of Hope Blog to read previous entries. For more details, check out our Voices of Hope blog guidelines. Submissions may be short– a paragraph or two is ideal. We’d love your photo with your submission but are happy to keep your identity anonymous if you prefer. Everyone has a story. Share yours with others. You never know who you might help.

FDA Development and Regulation of Abuse-Deterrent Opioid Medications Public Meeting
11/7/2014

On October 30 and 31, the Food and Drug Administration (FDA) held a public meeting to discuss the development, assessment and regulation of abuse-deterrent formulations (ADF) of opioid medications. The meeting was led by Janet Woodcock, MD, Director, Center for Drug Evaluation and Research (CDER), and Douglas C. Throckmorton, MD, Deputy Director, Regulatory Programs, CDER. FDA is seeking input on these issues from all stakeholders, including patients, health care providers, the pharmaceutical industry, patient advocates, academics, researchers, and other governmental entities. Abuse-deterrent formulations are new medications that make it more difficult to extract drugs – including non-crushable pills. Speaking on behalf of those who need opioid medications, impassioned patient advocates emphasized the need for the new medications to remain effective despite the addition of the new counter-measures. There was fear that because the new formulations are being designed for people not intended to use them, they will possibly lose their efficacy for those who need and actually use opioids as intended.

International Pelvic Pain Society Annual Meeting
11/7/2014

ICA staff attended the International Pelvic Pain Society Annual Meeting from October 23-25 in Chicago, IL. ICA was there to advocate for IC patients and to learn the newest developments in IC and pelvic pain research. Below you’ll find summaries of the sessions attended by ICA staff.

  • The Role of Combined Hormonal Contraceptives and Vulvodynia: Finally Putting This Controversy to Bed

    In this session, Dr. Andrew T. Goldstein presented evidence that women who have a specific repeated sequence in a particular androgen receptor gene are more likely to develop symptoms such as provoked vestibulodynia as a consequence of the hormonal changes that all women experience from Combined Hormonal Contraceptives (CHCs). Women with these inefficient androgen receptors are more likely to develop symptoms from low free testosterone levels in their blood serum than women who have more efficient androgen receptors. Therefore, the risk of developing provoked vestibulodynia is not solely due to the decrease in free testosterone but it is the combination of lowered free testosterone with an inefficient androgen receptor that predisposes women to vestibular pain.

  • Injection Strategies for Chronic Pelvic Pain

    Dr. Jennifer Gunter found that while injections are merely a temporary improvement and not a cure, temporary improvements are often nonetheless helpful to patients. In her practice, she has found that injection techniques may be both diagnostic as well as therapeutic, and should be part of an integrated multidisciplinary pain program. In addition, she noted that Botulinum toxins are highly effective in producing pelvic muscle paralysis but unfortunately, analgesia does not always follow. Lastly, Dr. Gunter found that neuroblockade may prove to be therapeutic and provide insight into the pain condition.

  • Integrating Central Sensitization into Clinical Practice

    Physical Therapist Carolyn Vandyken argued that clinicians need to recognize that treatments of the physical body may be valuable in people with persistent pain. She stated that though the central nervous system is altered by inputs from the physical body, treatment needs to be done within the context of a biopsychosocial perspective and it needs to start with therapeutic neuroscience education. Vandyken presented evidence showing that treating people with persistent pain with psychosocial interventions only is likely to lead to as poor an outcome as when physicians have tried to fix only the tissues the patients reported to be painful.

  • Endometriosis and Chronic Pelvic Pain: Is It All in Her Head? Unraveling Central Neural Mechanisms in Endometriosis and Chronic Pelvic Pain

    In her session, Dr. Sawsan As-Sanie suggested that chronic pain states are associated with changes in regional brain morphology. Her study’s data challenged the idea of endometriosis being the only and direct cause of pelvic pain in women with endometriosis-associated chronic pelvic pain (CPP), which suggests that central mechanisms as reflected by changes in regional brain morphology play a pivotal role. Whether in the wake of a prolonged nociceptive (pain caused by stimulation of nerve cells) input (caused by endometriosis) or preexisting, these central mechanisms seem to play a critical role in making pain chronic. Therefore, Dr. As-Sanie believes that CPP in most women results from an interaction between antinociceptive (reducing sensitivity to painful stimuli) capacity and central neural adaptability.

  • The Epidemiology of Chronic Pelvic Pain in Women

    Abimbola Ayorinde, BSc, MSc presented epidemiology findings that there is high prevalence of CPP through the entire adult age range, although the peak is within the reproductive years. Research has found that one in six women with CPP reports pain with neuropathic (pain is caused by damage or disease) features. The associations with CPP are similar to other regional and widespread (e.g. fibromyalgia) pain conditions. Ayorinde recommends prospective studies are required to determine predictors of symptom onset and the relationship to other pain conditions. In addition, it is possible that management strategies used for other chronic pain will be effective for CPP.
Find Out How Others Are Finding Relief from Pain
10/31/2014

Have you tried the ICHope Pain Management Tool yet? ICHope is a free web-based tool to help you manage and cope with IC pain. Take control of your IC pain by using this tool to whip your pain into place. We know your pain is unique and it is difficult to control your environment when trying to manage your pain. The suggestions found in the ICHope Pain Management Tool have been successful for others. There’s only one way to find out if it will help you.

Last month, ICA hosted a free webinar that featured Dr. Mary Ruth Velicki walking viewers through the benefits and easy steps to using ICHope to help alleviate their battle with IC-related pain. This recorded webinar is available for viewing on ICA’s website. Dr. Velicki is a physical therapist, IC patient, and author of the book Healing Through Chronic Pain, A Physical Therapist’s Personal Journey of Body, Mind, Spirit Transformation. View the webinar today!

Already viewed the webinar? Let us know how we did by taking this short survey.

Get Ready for Giving Tuesday!
10/30/2014

It’s not too early to get ready for Giving Tuesday! Giving Tuesday inspires personal philanthropy and encourages bigger, better, and smarter charitable giving during the holiday season, showing that the world truly gives as good as it gets. The third annual Giving Tuesday will take place on December 2, 2014. Giving Tuesday brings together diverse networks of people, large corporations, small businesses, and nonprofits across an ever-expanding range of new media platforms to encourage and amplify small acts of kindness in the service of changing our world for the better. No gift is too small, so consider donating to ICA this Giving Tuesday.

Homeopathy for Urinary Tract Infections
10/30/2014

If you were unable to attend the National Center for Homeopathy’s (NCH) free webinar, Homeopathy for Urinary Tract Infections, but are interested in what was discussed, it can now be viewed on the NCH website here: http://www.homeopathycenter.org/webinar/homeopathy-urinary-tract-infections. This informative webinar was hosted by Tanya Renner, CCH and guided viewers through using homeopathy successfully to break the cycle of repetitive bladder infections.

Updated Helpful Links & Organizations Page
10/30/2014

Knowledge is power! We’ve updated and extended the ICA’s Helpful Links & Organizations page to assist you in finding information about IC and its associated conditions.  Go to www.ichelp.org/HelpfulLinks to learn more.

What to Know Before Bladder Removal Surgery
10/30/2014

The Bladder Cancer Advocacy Network will be hosting a free webinar: What Do You Wish You Had Known Before Bladder Removal Surgery? A Response from Survivors, next Tuesday, Nov 4, 2014 at 8:00 PM EST. Three patient advocates will share their advice. To register for the free webinar, go here: https://attendee.gotowebinar.com/register/4872734629769794306

30 For 30
10/30/2014

Help ICA celebrate 30 years of support and hope by submitting your personal IC story. To commemorate our 30th anniversary, ICA would like to collect and publish at least 30 stories of hope, encouragement, and successful living with IC to inspire others. So far, we’ve received 3 submissions…we still need at least 27 more. Help us celebrate ICA’s anniversary and reach our goal!

Stories will be accepted from patients and healthcare providers, as well as family and friends of IC patients who have been affected by their IC. Check out the ICA Voices of Hope Blog to read previous entries. For more details, check out our Voices of Hope blog guidelines. Submissions may be shorter than the usual requirement – a paragraph or two is ideal, and don’t forget to send your photo with your blog submission. We’re excited to read and share all the stories! There are so many reasons to feel hopeful. Everyone has a story. Share yours with others. You never know who you might help.

BIO Patient and Health Advocacy Summit
10/23/2014

On October 14 and 15, ICA staff attended the BIO Patient and Health Advocacy Summit in Washington, DC. The host was the Biotechnology Industry Organization, the world’s largest trade association representing biotechnology centers and related organizations. This significant meeting brought together voluntary and non-profit health and patient advocacy organizations along with the biotechnology industry for two days of discourse on current public policy issues, and to share best practices, and exchange ideas. During the summit, kicked off by keynote speaker Rep. Joe Pitts (R-PA), topics such as access to care post-Affordable Care Act, increasing patient voice in drug development, and preserving patient access to innovative treatments were discussed.

53rd Meeting of the National Advisory Council for Complementary and Alternative Medicine
10/23/2014

On October 10, an ICA staff member attended the 53rd Meeting of the National Advisory Council for Complementary and Alternative Medicine (NACCAM). NACCAM has the responsibility of advising, consulting with, and making recommendations to the Director of National Center for Complementary and Alternative Medicine (NCCAM) on matters relating to the research activities and functions of the Center. Of note are the thirteen new research studies initiated by NCCAM aimed at addressing pain and related conditions with non-drug approaches. In addition, it was reported that NIH has created three new awards – totaling up to $19.4 million - for research to address the growing proportion of US citizens that have multiple chronic medical conditions. New research findings were also presented at the meeting, among them the results of a study partially funded by NCCAM which found that some bacteria that share our bodies may manufacture antibiotics and that these substances may be capable of fighting infection.

Giving Tuesday is Coming!
10/23/2014

It’s not too early to get ready for Giving Tuesday! Giving Tuesday inspires personal philanthropy and encourages bigger, better, and smarter charitable giving during the holiday season, showing that the world truly gives as good as it gets. The third annual Giving Tuesday will take place on December 2, 2014. Giving Tuesday brings together diverse networks of people, large corporations, small businesses, and nonprofits across an ever-expanding range of new media platforms to encourage and amplify small acts of kindness in the service of changing our world for the better. No gift is too small, so consider giving to ICA this Giving Tuesday.

30 Years/30 Stories
10/23/2014

Please help ICA celebrate 30 years of advocacy and hope by submitting your personal IC story. To commemorate our 30th anniversary, ICA would like to collect and publish thirty stories of hope, encouragement, and successful living with IC to inspire others. Stories will be accepted from patients and healthcare providers, as well as family and friends of IC patients who have been affected by their IC. Check out the ICA Voices of Hope Blog to read previous entries. For more details, check out our Voices of Hope blog guidelines here: http://www.ichelp.org/page.aspx?pid=632. Submissions may be shorter than the usual requirement – a paragraph or two is ideal, and don’t forget to send your photo with your blog submission. We’re excited to read and share all the stories!

ICA Website Feedback Survey
10/23/2014

We want to make sure that we’re providing you with an easy user experience on the ICA website! Please take a moment to complete this short survey.

Click here to take the survey!

Homeopathy for Urinary Tract Infections
10/16/2014

On Tuesday, October 21, at 8 PM Eastern, the National Center for Homeopathy (NCH) will be holding a free webinar, Homeopathy for Urinary Tract Infections. Join NCH with Tanya Renner, CCH to find out how you can use homeopathy successfully to break the cycle of repetitive bladder infections. Go here to register for this free webinar: https://www3.gotomeeting.com/register/591675126

The New Normal After Bladder Removal Surgery
10/16/2014

While major surgery resulting in bladder removal, enlargement, or urinary diversion is the sixth and final line of treatment for IC and is only recommended when everything else has failed, some patients have found great relief as a result. The Bladder Cancer Advocacy Network is holding a free webinar - The New Normal after Bladder Removal Surgery, Part II – on Tuesday, October 21, at 8 PM Eastern. What to expect after bladder removal surgery, preventing complications, and choosing a diversion will be discussed by:

  • Tracy Downs, MD, Associate Professor of Urology, Director of Bladder Cancer and Intravesical Programs, University of Wisconsin
  • Deborah Hensley, BSN, RN, CURN, Department of Urology, UT Southwestern Medical Center

If you’d like to view this free webinar, register here: https://attendee.gotowebinar.com/register/4851965954345897986

NOTE: Part I of The New Normal after Bladder Removal Surgery can be viewed here: http://www.bcan.org/learn/educational-programs/webinars/new-normal-bladder-removal-surgery/

Women In Pain Conference
10/16/2014

Last month For Grace held a uniquely empowering event for women in pain, their caregivers, and the healthcare professionals who treat them.

This year’s theme, “Getting Real: Transforming Hidden Truths Into Positive Action,” focused on Chronic Pain and Coping, with a special emphasis on Positive Actions and Forgiveness. The webcast for this event is now available online at http://www.forgrace.org/women/in/pain/C271/.

ICHope Pain Management Tool Webinar – Now Available!
10/6/2014

Were you unable to join us for the free ICHope Pain Management Tool webinar? If so, it is now available for viewing on ICA’s BrightTalk Channel. The webinar featured Dr. Mary Ruth Velicki walking viewers through the benefits and easy steps to use the ICHope Pain Management Tool to help overcome their battle with IC-related pain. Dr. Velicki is a physical therapist, IC patient, and author of the book Healing Through Chronic Pain, A Physical Therapist’s Personal Journey of Body, Mind, Spirit Transformation. View the webinar today!

ICA Intimacy Facebook Chat
10/6/2014

If you missed the ICA Intimacy Facebook Chat, or would just like to review what was discussed, all final questions (both answered and unanswered) and their answers from the chat have been posted on the ICA website at www.ichelp.org/FBChatIntimacy. ICA thanks all participants for making this exciting event a success! If you still have unanswered question, don't forget to check out ICA’s Online Support Community where you can be connected to hundreds of other people experiencing similar symptoms, situations, experiences, and emotions.

Healthcare Provider Survey Winner
10/3/2014

The Summer 2014 ICA Update was a special issue mailed to over 100,000 healthcare providers across the country to raise IC awareness and education. As an incentive for their feedback, ICA entered those healthcare providers who completed a survey into a drawing for a new MS Surface tablet. And the lucky recipient was Dr. Yuktanand Singh. Dr. Singh is in general practice and pediatrics in Saline, Michigan. He refers his patients to ICA because, "ICA is a great resource for patients suffering from nonspecific pelvic pain. It also keeps the medical community aware of IC as a differential diagnosis of pelvic pain. As for treating IC, I prefer the holistic methods discussed on this site." Congratulations, Dr. Singh!

Hydrocodone Rescheduling Update
10/3/2014

The US Drug Enforcement Administration (DEA) issued a clarification of its rules concerning refills of existing prescriptions of hydrocodone-containing combination products (HCCP). The DEA has determined that existing prescriptions for HCCP with remaining refills may be refilled until April 8, 2015. It was previously reported that these refills would be cancelled on October 6.However, what is not clear is how pharmacies will treat these already-existing prescriptions. Some pharmacies may choose not to honor these remaining refills, but may instead require a new prescription. In order to ensure you continue to receive the medications you need after October 6, it is a good idea to work out a plan of action with your healthcare provider as soon as possible.

ICHope Pain Management Tool Webinar – Now Available!
9/26/2014

Were you unable to join us last night for the free ICHope Pain Management Tool webinar? If so, it is now available for viewing on ICA’s BrightTalk Channel. The webinar featured Dr. Mary Ruth Velicki walking viewers through the benefits and easy steps to use the ICHope Pain Management Tool to help overcome their battle with IC-related pain. Dr. Velicki is a physical therapist, IC patient, and author of the book Healing Through Chronic Pain, A Physical Therapist’s Personal Journey of Body, Mind, Spirit Transformation. After her presentation, Dr. Velicki answered viewer questions and shared her personal experience with participants. Interested in trying ICHope Pain Management Tool? View the webinar today! 

If you participated in the webinar last night, we’d love your opinion by taking our brief survey to help us provide more beneficial and improved events in the future.

IC Awareness Month
9/26/2014

September is IC Awareness Month, and raising public awareness of IC through education and advocacy is a vital part of the mission and work ICA does every day on your behalf. While ICA continues to work at conquering IC and changing lives, there’s so much you can do, too! For instance, if you notice someone on ICA’s Online Support Community that’s been recently diagnosed, reach out and help educate him/her and let them know they aren’t alone. Write your representative or senator to make your voice heard and to raise awareness at the highest levels of government. In addition, encourage your compassionate and knowledgeable healthcare providers to be included on ICA’s Online Healthcare Provider Registry if they aren’t already. And consider supporting research because so much of what we now know about IC has been learned through scientific discovery. These are but a few of the many things you can do during IC Awareness Month and throughout the year. Join us now in keeping up this important work!

9th DEA National Prescription Drug Take Back Day
9/26/2014

Don’t flush your unused or expired meds! Flushing old or expired medications down the drain is dangerous and bad for the environment. The US Drug Enforcement Administration is holding a free medication disposal on Saturday, September 27, 2014 from 10 a.m. until 2 p.m. To find your local turn in site, click here to visit the DEA website or call 1-800-882-9539 to find a collection site near you.

TMJ Association’s Scientific Meeting
9/26/2014

ICA’s Executive Director, Lee Claassen, recently served on a panel of patient advocates during the TMJ Association’s Scientific Meeting in Bethesda, Maryland. The meeting focused on the epigenetic and genetic factors in temporomandibular disorders (TMD) and their overlapping pain conditions, one of which is IC. Panel participants, including patient advocates for fibromyalgia and chronic fatigue syndrome, shared the diagnostics and currently recommended treatments for their constituents. Members of the panel commended and encouraged the researchers in the audience to continue their work in identifying the causes, potential connections, and treatments for overlapping chronic pain conditions.

ICA is Moving!
9/26/2014

On Friday, September 26, the ICA office will be relocating to 7918 Jones Branch Drive, Suite 300, McLean, VA 22102. Please note that our phones will be down from Thursday, September 25, 2014 after 5 p.m until Monday, September 29. However, callers can still leave voicemail messages. If you have a question, you are encouraged to use email (icamail@ichelp.org) to contact us between Friday and Monday, but please allow a bit extra time for a response while we get moved in and reorganized. Thank you!

ICHope Pain Management Tool Free Webinar – Register Today!
9/17/2014

Do you have pain caused by IC? Do you have a family member who has pain caused by IC? Are you curious how to use ICA’s ICHope Online Pain Management Tool, or maybe even how to start the process? If you answered yes to any of these questions, then this webinar is for you!

Join ICA on Thursday, September 25th at 8:00 PM EST for a free webinar as we walk through the benefits and easy steps to use the ICHope Pain Management Tool. This webinar will also feature Dr. Mary Ruth Velicki, a physical therapist, IC patient, and author of the book Healing Through Chronic Pain, A Physical Therapist’s Personal Journey of Body, Mind, Spirit Transformation. View her “Voices of Hope” story.

Dr. Velicki will answer your questions, share her personal experience with participants and showcase how the ICHope Pain Management Tool can help you overcome your battle with IC-related pain.

When you register for the webinar, you will be able to ask your questions in advance to ensure anonymity. Not able to join us at that time? No worries, the webinar will be recorded for you to view at a later time.

Log in to the ICHope Pain Management Tool today and send your questions to ICA at ICAmail@ichelp.org!

Click here to register!

9th DEA National Prescription Drug Take Back Day
9/12/2014

Don’t flush your unused or expired meds! Flushing old or expired medications down the drain is dangerous and bad for the environment. The US Drug Enforcement Administration is holding a free medication disposal on Saturday, September 27, 2014 from 10 a.m. until 2 p.m. Visit www.dea.gov, or call 1-800-882-9539.

To find your local turn in site, click here to visit the DEA website or call 1-800-882-9539 to find a collection site near you.

Changes Coming for Some Pain Medications
9/12/2014

On August 22, 2014, the US Drug Enforcement Administration reclassified hydrocodone combination medications into the more restrictive Schedule II category. The DEA’s new rules go into effect on October 6, 2014, and will cause some significant changes in the way pain medications are prescribed and dispensed. Below is a list of some medications that will be affected by the new rules.

  • Vicodin, Vicodin ES, Vicodin HP
  • Lortab, Lorcet, Lorcet Plus
  • Norco
  • Zydone
  • Vicoprofen
  • Any other medication that includes the word “hydrocodone” and one of the following:
    • Aspirin
    • ASA
    • Acetaminophen
    • APAP
    • Ibuprofen
  • Cough medications including hydrocodone

After the new rule goes into effect, pharmacies will no longer be allowed to refill prescriptions for these medications. Any remaining refills will no longer be valid, and a new prescription will be required to obtain a fresh supply. In addition, your prescriber will not be permitted to call in a prescription for any of the above medications. You will need a new prescription every time. Your healthcare provider will need to decide whether or not an office visit is necessary before writing a new prescription. However, it will still be possible to obtain a prescription for up to three months’ worth of medication, but the prescriber will need to know how to do so and write the prescription in the proper way. In order to ensure you continue to receive the medications you need after October 6, it is a good idea to work out a plan of action with your healthcare provider as soon as possible.

ICHope Online Pain Management Tool
9/11/2014

No one knows you better than you! Check out ICA's ICHope Online Pain Management Tool for help developing better control over your IC pain and improving your quality of life. This free interactive program — the first of its kind — is designed to help IC patients learn to better manage their IC pain by adopting healthy, positive behaviors to prevent or minimize pain and to cope with pain that does occur. In addition, it shows patients how to implement these strategies — at their own pace, when they are ready — to help manage pain from IC. ICHope was created uniquely for IC patients, who, along with ICA staff and experts in the community, were integral in the development of this program. Are you ready to manage your pain? To get started, visit www.ichelp.org/ichope and learn more about ICHope.

If you’ve already begun the process of managing or minimizing your IC pain using ICA's ICHope Online Pain Management Tool, now is the time to finish what you started. Don’t forget to log in every 30 days to update your profile and take full advantage of the program. The next steps to greater understanding and relief are awaiting completion. In order to get the full benefit of ICHope, please return and continue your journey to healing and complete the next stage of the tool – you’ll be glad you did!

30th Anniversary Survey
9/5/2014

This year marks ICA’s 30th anniversary! Since 1984, the ICA has been advocating for IC patients, raising awareness, and funding and promoting research. Thirty years of hope for the 12 million men and women suffering with IC! We know there’s still work to be done, but to help us celebrate the occasion in our next issue of ICA Update, we’d love your feedback about how far ICA and IC-related issues have progressed. The survey should only take a few minutes of your time.

Click here to take the survey.

IC Awareness Month
9/4/2014

September is IC Awareness Month, and raising public awareness of IC is nothing new to ICA – education and advocacy have been vital parts of our mission and work every day for the last thirty years. ICA will continue to work at conquering IC and changing lives and there’s so much you can do, too! For instance, if you notice someone on ICA’s Online Community that’s been recently diagnosed, reach out and help educate him/her and let them know they aren’t alone. Write your representative or senator to make your voice heard and to raise awareness at the highest levels of government. In addition, encourage your healthcare providers to be included on ICA’s Online Healthcare Provider Registry if they aren’t already. And consider supporting research because so much of what we now know about IC has been learned through scientific discovery. These are but a few of the many things you can do during IC Awareness Month and throughout the year. Join us in keeping up this important work!

https://www.ichelp.org/HealthcareProviderRegistry
National Pain Awareness Month
9/4/2014

September is an important month for anyone living with pain because it is National Pain Awareness Month. For thirty days, the US Pain Foundation will draw public attention to the hardships, struggles and trials of those suffering from chronic pain. This month, and every month, ICA continues to strive to educate the public and raise awareness about how chronic pain impacts us all. It is the intention of Pain Awareness Month to create hope and compassion for those with pain, and to constantly remind them they are heard and not alone.

ICA Because You Care Book Series
8/27/2014

Do you or a loved one suffer from IC? ICA has volumes of information available for IC sufferers, but what about those who care about an IC patient. Donors who have given $250 or more receive free online access to ICA’s Because You Care book series...just one of the many benefits of being an ICA Patron! The series includes Exploring the Unique Intimacy Issues of People with Interstitial Cystitis, Information about Interstitial Cystitis for Family and Friends of People with IC, and Being Your Own Best Advocate.

ICA highly recommends these books to further open the lines of communication, encourage productive discussions, and inspire trust, compassion, love, and hope so you may help your loved one in as many ways as possible because you care.

Click here to donate and download the books today!

Thank You for Your Participation
8/27/2014

If you participated in the recent Facebook Chat on IC & Intimacy, thank you! Events such as the chat depend on your participation to be successful, and by doing so, you help many others facing similar issues. In order to continue with programs such as this, we’d love your feedback by taking our ICA Intimacy Facebook Chat survey. In addition, for those questions that we were unable to answer during the chat, we will post their answers as part of a transcript on our website at www.ichelp.org/FBChatIntimacy in the next few weeks. The identities of participants will be kept confidential and will not be disclosed in the transcript.

Hydrocodone Reclassified by DEA
8/27/2014

Last Thursday, the Drug Enforcement Agency ruled that hydrocodone combination products, some of the most widely prescribed pain medications, would be reclassified as a Schedule II drug, a more restrictive class reserved for the most dangerous medicines. This policy change has been debated for some time, and is an effort to curb opioid abuse, but the more restrictive policy could also inconvenience millions of Americans. There is a concern that too many opioids are being misused. However, with as many as 100 million Americans suffering from some sort of chronic pain, reclassifying these drugs will make it more difficult for those people with legitimate needs to get the medications they require. The new classification takes effect in early October 2014. An estimated 25 million Americans are on automatic refills of hydrocodone, but once in place, patients can only be written prescriptions for a 90-day period, and refills won't be able to be called in to a pharmacy. About 130 million prescriptions were written for hydrocodone last year. This rule only impacts hydrocodone that is combined with an over-the-counter painkiller like acetaminophen or aspirin. Pure hydrocodone is already a Schedule II drug.

ICA has not sat on the sidelines while policies impacting IC sufferers are debated and implemented. ICA representatives have testified before the FDA on behalf of IC patients everywhere on many occasions and are always advocating for IC patients, either independently, or in conjunction with other chronic pain organizations. We have repeatedly urged the FDA to ensure that patients with chronic pain conditions like IC have access to critical pain medications as the Agency moves forward with regulatory work on the serious issues of opioid addiction and misuse, and will continue to do so.

Log In for ICA's Intimacy Facebook Chat
8/21/2014

ICA will be hosting a one-hour Facebook chat on Intimacy and IC today, Thursday, August 21 at 7 p.m. Eastern. Our content expert will be:

If you want to join us, please login to your Facebook account and go to the ICA Facebook page at: www.facebook.com/InterstitialCystitisAssociation.

Have a question about being intimate with your partner, despite your IC? Wondering how to maintain intimacy with your partner? Our panelist will field all of your questions about intimacy and IC. Submit your questions in advance by emailing ICA at icamail@ichelp.org and putting “Facebook Chat Question” in the subject line.

Start thinking of questions for this informative discussion and join us tonight at 7pm EST.

ICA Board Member Appointed to MAPP Executive Committee
8/7/2014

ICA is excited to announce that ICA Board Member and Medical Advisory Liason, Dr. Robert Moldwin, has been selected as the newest member of the MAPP Executive Committee. When asked about this exciting development, Dr. Moldwin commented that, “I'm really honored to work with such a brilliant and dynamic group of people. I have high hopes that the Multidisciplinary Approach to the Study of Chronic Pelvic Pain will yield new and exciting discoveries that will help us achieve the most important goal... improving the lives of our patients.” ICA wishes Dr. Moldwin and his fellow investigators well in their search for answers.

Have a Story of Success?
8/7/2014

There are so many reasons to feel hopeful. Everyone has a story. Here’s your chance to be an inspiration to others. Please share your story of hope, encouragement, and success with interstitial cystitis on ICA’s Voices of Hope blog. You never know who you might help.

Stories of hope, encouragement, and successful living with IC will be accepted from patients and healthcare providers, as well as family and friends of IC patients who have been affected by their IC. For more details, check out our Voices of Hope blog guidelines.

Update Your ICA User Profile
8/7/2014

Make sure your ICA user profile is up to date so you can stay apprised of all the newest developments with ICA and receive important IC-related news.

More Relief Awaits!
8/7/2014

Congratulations! You’ve begun the process of managing or minimizing your IC pain using ICHope Online Pain Management Tool. Now is the time to finish what you started. The next steps to greater understanding and relief are awaiting completion. In order to get the full benefit of ICHope, please return and continue your journey to healing and complete the next stage of the tool – you’ll be glad you did!

Nutrition and Wellness for Pelvic and Sexual Health
8/7/2014

Evidence-Based Nutrition and Wellness Coaching for Pelvic and Sexual Health, hosted by Bella Physical Therapy and presented by Jessica Drummond, MPT, CCN, CHC will be held on September 20th & 21st, 2014 in Fair Lawn, NJ. Attendees will be presented with approaches to hands-on physical therapy, building a skilled pelvic health team for their patients, and the latest research as it relates specifically to endometriosis, PCOS, vulvodynia, or other pelvic health conditions. In addition, valuable coaching skills for optimizing patient outcomes will also be discussed. While patients will benefit by participating in this course, it can also be recognized for continuing education units for licensed healthcare professionals who specialize in women’s health. For more information, please visit: http://customhormonehealing.com/go/register-nj

Share Your Experience in Accessing Pain Meds
7/31/2014

Are your pain management needs being impacted by the increasingly tougher regulations to curb misuse of controlled pain medications? Do you have difficulty obtaining or filling prescriptions for medications that help keep your pain under control? If so, we want to hear from you!

Share your stories and experiences to help ICA advocate for legitimate patient access to these necessary pain medications by completing this short survey. It should only take 5 minutes of your time.

Click here to take the survey!

Nutrition and Wellness for Pelvic and Sexual Health
7/24/2014

Evidence-Based Nutrition and Wellness Coaching for Pelvic and Sexual Health, hosted by Bella Physical Therapy and presented by Jessica Drummond, MPT, CCN, CHC will be held on September 20th & 21st, 2014 in Fair Lawn, NJ. Attendees will be presented with approaches to hands-on physical therapy, building a skilled pelvic health team for their patients, and the latest research as it relates specifically to endometriosis, PCOS, vulvodynia, or other pelvic health conditions. In addition, valuable coaching skills for optimizing patient outcomes will also be discussed. While patients will benefit by participating in this course, it can also be recognized for continuing education units for licensed healthcare professionals who specialize in women’s health. For more information, please visit: http://customhormonehealing.com/go/register-nj

ICA Diet Facebook Chat Transcript Now Available
7/24/2014

If you missed the ICA Diet Facebook Chat, or would just like to review what was discussed, check out all the final questions and their answers from the chat on the ICA website at www.ichelp.org/FBChatDiet. ICA thanks all participants for making this exciting event a success!

If you participated, we’d love your feedback by taking our ICA Diet Facebook Chat survey.

Manage Your Pain Your Way
7/24/2014

No one knows you better than you! Check out ICHope Online Pain Management Tool for help developing better control over your IC pain and improving your quality of life. 

We want your feedback! Let us know whether you have used ICHope Online Pain Management Tool by taking a short survey. It is confidential and should take less than a minute to complete. Your feedback allows us to better support you.
Take the Survey

Online Support Community
7/24/2014

Do you feel like no one understands what it’s like to have IC? You are not alone. Now with over 400 members, ICA’s Online Support Community is a great place of peace, hope, advice, and comfort for patients, family members, friends, and healthcare professionals looking for ways to better understand the impact of interstitial cystitis (IC). We invite you to join us in the online support community, where you can connect with hundreds of other people experiencing similar symptoms, situations, and emotions. 

ICA’s Patient Forum Sessions are Available as Webinars
7/24/2014

You can still view the sessions from ICA’s Patient Forum. Listen to many prominent experts in the field of IC research and treatment in these sessions, called “truly empowering” by those that attended the Patient Forum. Gain a wealth of information from the free and informative sessions, which include topics such as, “Integral Approaches to Treating IC,” “When Standard Treatments Fail,” “IC Diet: Friendly Fats,” and “A Time for Two: Intimacy, Sexuality and IC.”

Read More

ICA Attending Joint AUGS/IUGA Annual Meeting
7/24/2014

ICA staff is currently attending the American Urogynecologic Society (AUGS) and the International Urogynecological Association (IUGA) Scientific Meeting. AUGS and IUGA are jointly hosting their annual scientific meetings in Washington, DC at the Washington Convention Center. The joint meeting will serve as the largest venue for those in the field of urogynecology and female pelvic medicine and reconstructive surgery to come together for education, networking and sharing.

ICA Diet Facebook Chat - We Want Your Feedback!
7/2/2014

If you missed the ICA Diet Facebook Chat, or would just like to review what was discussed, check out the Facebook post below. ICA thanks all participants for making this exciting event a success!

If you participated, we’d love your feedback by taking our ICA Diet Facebook Chat survey. Don't forget to check out ICA’s Online Support Community where you can be connected to hundreds of other people experiencing similar symptoms, situations, experiences, and emotions. All of this is made possible through donations from people like you. Please consider supporting the ICA so that we can continue programs such as these.

 
Happy 4th of July!
7/2/2014

Happy 238th birthday, America! Will you be celebrating this Independence Day weekend by attending numerous cook outs and spending time with family and friends? To join in on the fun and avoid flare ups, nutritionist Julie Beyer has a few recommendations to consider when grilling out this summer. www.ichelp.org/SummertimeMeals

ICA Online Pain Management Tool - Have You Moved on to the Next Stage?
7/2/2014

Have you tried ICA’s complimentary online pain management tool, ICHope Self-Management Module. If so, don’t forget to log in every 30 days to update your profile and take full advantage of the program! This free interactive program – the first of its kind – is designed to help IC patients learn to better manage their IC pain by adopting healthy, positive behaviors to prevent or minimize pain and to cope with pain that does occur. In addition, it shows patients how to implement these strategies — at their own pace, when they are ready — to help manage pain from IC. ICHope was created uniquely for IC patients, who, along with ICA staff and experts in the community, were integral in the development of this program. Are you ready to manage your pain? To get started, visit www.ichelp.org/ichope and learn more about ICHope.

ICA Travels
6/27/2014

ICA staff recently participated in the following meetings to raise awareness about IC-related issues and to explore collaborative projects to improve patients’ lives:

  • Overactive Bladder Patient Advocacy Roundtable hosted by the Urology Care Foundation, the official foundation of the American Urological Association. The purpose of the Roundtable was to assess the needs and gaps in overactive bladder patient advocacy in terms of public awareness, patient education, services to patients, doctor/patient dialog, and political advocacy. A wide range of patient advocacy groups participated and presented the services their organizations provide as well as their perspective of the unmet needs of people living with overactive bladder. The public’s general knowledge and understanding of the “ages and stages” of pelvic health was also discussed. The group then brainstormed and prioritized potential joint projects to address the gaps and meet the needs that had been identified. Stay tuned for more details on the collaborative initiatives as the projects are further defined and timelines are developed.

  • ESSIC, whose members are scientists and/or medical practitioners from all over the world, is the International Society for the Study of Bladder Pain Syndrome (BPS). The Annual Meeting which was hosted for the first time in the U.S. this year in Philadelphia, provided a forum to exchange research results, experiences, and ideas on BPS/IC. This year’s agenda focused on the discussion of Hunner lesion and the implications of its clinical finding. Lee Claassen, ICA’s Executive Director, shared the podium with Dr. Vicki Ratner, ICA’s Founder and President Emeritus and presented the progress that ICA has made since its beginning and the work and initiatives in which it is still involved today.

Summer 2014 ICA Update
6/27/2014

While hard copies of the next issue of the ICA Update will be arriving in mailboxes in the next few weeks ICA’s donors that have contributed to the organization at the annual giving level of Supporter or higher can view it online immediately at: www.ichelp.org/ICAUpdateBackIssues This special issue of the ICA Update was written specifically for clinicians and is being distributed to:

  • Community Health Centers
  • Federal Health Agencies
  • College Health Centers
  • Family Physicians
  • Internal Medicine Physicians
  • Emergency Physicians
  • Nurse Practitioners
  • Physician Assistants
White House Summit on Heroin and Prescription Drugs: Federal, State, and Community Responses
6/27/2014

On June 19, ICA staff viewed the live feed of the White House Summit on Heroin and Prescription Drugs: Federal, State, and Community Responses which highlighted the public health and safety issues surrounding prescription painkillers. The goal of the summit was to discuss trends and challenges in dealing with the wave of opioid abuse in the United States, identify innovative practices and models, and discuss how practitioners at every level can help reduce overdose deaths and public health consequences. Participants included US Attorney General Eric Holder, Vermont Governor Peter Shumlin, National Institute on Drug Abuse Director Dr. Nora Volkow, and experts from across the country on education, treatment, and overdose and infectious disease prevention. Issues explored included expanding drug treatment access to millions through the Affordable Care Act, encouraging people and medical professionals to learn the signs and symptoms of problematic drug use and to intervene before substance use becomes a chronic condition. While discussing opioids and pain, Dr. Volkow made the important point that there are no safe medications to treat chronic pain. The summit participants discussed the use of naloxone, a drug that is easy to administer and has been used effectively to reverse opioid overdose and has already saved thousands of lives. Lastly, it was emphasized that the vast majority of people who are addicted to heroin and/or opioids began their addictive behaviors very young and that prescription drugs were usually not their first abuse of a drug.

ICA Diet Facebook Chat
6/27/2014

If you missed the ICA Diet Facebook Chat, or would just like to review what was discussed, all final questions (both answered and unanswered) and their answers from the chat will be posted on the ICA website at www.ichelp.org/FBChatDiet in the next week. ICA thanks all participants for making this exciting event a success!

If you participated, we’d love your feedback by taking our ICA Diet Facebook Chat survey. Don't forget to check out ICA’s Online Support Community where you can be connected to hundreds of other people experiencing similar symptoms, situations, experiences, and emotions. All of this is made possible through donations from people like you. Please consider supporting the ICA so that we can continue programs such as these.

ICA Restructures Membership Program
6/27/2014

ICA has restructured its membership program to give you more benefits and a greater variety of support options. As a $50 Supporter, you’ll be kept abreast of the latest IC research, news, and ICA announcements. You’ll also receive online access to ICA brochures and fact sheets, a downloadable restroom access card for printing, and online access to the two most recent issues of ICA Update. As a $100 Advocate, you’ll get all that plus online access to ALL past issues of ICA Update. Go to www.ichelp.org/donate to learn more.

ICA Diet Facebook Chat - Mark Your Calendar!
6/11/2014

Mark your calendars! ICA will be hosting a one-hour Facebook chat about IC and diet on Wednesday, June 25th at 7:00pm ET. Our content experts will include:

  • Barbara Shorter, EdD, RD, CDN, Associate Professor of Nutrition, Long Island University
  • Barb Zarnikow, ICA Board Co-Chair
  • Rhonda Garrett, ICA Information Specialist

Have a question about a particular food? Wondering how to handle food sensitivities? Our panelists will field all of your questions about IC and diet.

ICA Calling for Applications for Board of Directors
6/5/2014

Apply by July 15, 2014

The Interstitial Cystitis Association (ICA) is calling for applications of knowledgeable, engaged, and inspired volunteers to lead, advise, and support the activities of the ICA by serving on its Board of Directors for a three-year term. The Board plays a leadership role in implementing strategic direction while securing funds to advance the ICA and its mission. Board members collectively represent a range of skills, experience, and expertise in the public, private, and non-profit sectors. The Board meets four times annually of which at least one meeting is conducted in-person/face-to-face.

On the Road Again
6/5/2014

ICA is on the road yet again! Thursday and Friday, ICA staff will be attending the Urology Care Foundation 2014 Overactive Bladder Roundtable. By partnering with other patient advocacy and medical organizations at this event, ICA hopes to raise awareness about IC-related issues by collectively working to develop potential collaborative projects to help improve patient lives.

On Friday, ICA is attending the 52nd Meeting of the National Advisory Council for Complementary and Alternative Medicine (NACCAM) at the National Institutes of Health. Through this meeting, ICA hopes to help define and determine the usefulness and safety of various complementary and alternative medicine interventions and their roles in improving the health and healthcare of IC patients.

June is Men’s Health Month!
6/5/2014

Men get IC, too! In fact, new studies have shown as many as 2 to 4 million American men may have IC. National Men’s Health Week is June 9-15, 2014. Now in its 20th year, National Men's Health Week is celebrated each year the week leading up to Father's Day. It’s a wonderful time to focus on how men with IC can take care of their health for themselves and for the well-being of their families. It’s also a great time to help raise awareness of IC in men.

If you are a man with IC, take a look at the wonderful resources we have for you:

Alliance for Pelvic Pain Retreat
6/5/2014

It’s a busy time of year for the ICA. ICA was in New York City for the second Alliance for Pelvic Pain Retreat. The Retreat was a place of love and support for the attendees and hosts, which included Dr. Robert Echenberg, a member of ICA’s Medical Advisory Board. Among the topics discussed were the many causes of and treatments for chronic pelvic pain and pelvic floor dysfunction. Upon reflection, ICA was left with some important take-away messages for sufferers, including:

  1. Share your knowledge! Your experiences may help to prevent suffering in others.
  2. Chronic pelvic pain is a multi-disciplinary and multi-organ problem requiring multiple approaches to treat.
  3. Listen to your body and mind. Be gentle, loving, and compassionate to yourself. Live mindfully and stay connected with yourself and loved ones .
  4. Practice self-care techniques every day.
  5. Healing takes time - be patient with yourself.
  6. Physical therapy is a critical element towards healing pelvic pain.
  7. Flare-ups are common, but keep observing, and make small changes in your daily routine or in treatment to see what helps.
  8. Ignore ignorance! Do not allow the opinions of others to affect how you view yourself. Your pain is real, even if others don’t understand it.
  9. Watch your children carefully. Prevention of chronic pelvic, genital, and sexual pain disorders is possible through education and early detection.
  10. THERE IS HOPE! Chronic pain research has exploded and improvements in care will continue.

In addition, ICA was directed to two websites that may prove helpful to IC patients. The first, 2date4love, is a dating site for people who cannot engage in sexual intercourse, yet would like to experience love, intimacy, and companionship. The second, Sex Smart Films, the “Netflix of Sex Education,” is dedicated to promoting sexual literacy, and can be particularly useful for those who are unable to have intercourse.

National Women’s Health Week
5/15/2014

The Office on Women’s Health, part of the U.S. Department of Health & Human Services, invites you to join in celebrating National Women’s Health Week, May 11-17, 2014. The goal is to empower women to make their health a priority. National Women's Health Week also serves as a time to help women understand what it means to be well. 

ICA Online Support Community
5/15/2014

Do you feel like no one understands what it’s like to have IC? You are not alone. With a growing number of members, ICA’s Online Support Community is a great place of peace, hope, advice, and comfort for patients, family members, friends, and healthcare professionals looking for ways to better understand the impact of interstitial cystitis (IC). We invite you to join us in the online support community, where you can connect with hundreds of other people experiencing similar symptoms, situations, and emotions.

ICA @ AUA
5/15/2014

Next week ICA will be attending and advocating at the American Urological Association (AUA) Annual Meeting in Orlando, FL. The AUA Annual Meeting is the largest gathering of urologists in the world and provides unparalleled access to groundbreaking research, new guidelines and the latest advances in urologic medicine. 

ICA in NYC
5/15/2014

ICA will also be attending the Alliance for Pelvic Pain retreat in New York City at the end of May. This retreat was created for chronic pelvic pain patients with complex symptoms, including Interstitial Cystitis (IC) and other pelvic and genital pain disorders. The goal of the retreat is to expand knowledge and care to the underserved population of people with chronic pelvic pain. 

Welcome, Dr. Robert Echenberg!
5/9/2014

Please join us in welcoming Dr. Robert Echenberg to the ICA Medical Advisory Board. Dr. Echenberg has decades of experience assessing, diagnosing and treating chronic pelvic, genital and sexual pain disorders. ICA is very excited by what Dr. Echenberg brings to the Medical Advisory Board, and we look forward to working with him to improve the quality of healthcare and lives of people living with interstitial cystitis.

Chronic Pain Patient Survey
5/8/2014

Washington University School of Medicine in Saint Louis, MO is conducting a survey of patients with chronic pain. The investigators would like feeback from 30 patients with interstitial cystitis on their current treatment. The findings of this research may be used for more patient-driven, evidence-based, decision making with the goal of improving patients’ outcomes and satisfaction with chronic pain treatment. Anyone with chronic pain lasting longer than three months can participate. If you would like to contribute, please contact the ICA. The first 30 people to respond will be passed along to the research team at Washington University School of Medicine.

ICA Online Support Community
5/1/2014

Now, with a growing number of participants, ICA’s Online Support Community is a great place of peace, hope, advice, and comfort for patients, family members, friends, and healthcare professionals looking for ways to better understand the impact of interstitial cystitis (IC). Forums where topics like "Living with IC," "IC Diet," and "Management of IC Pain" are frequently discussed, and new discussions are added daily. We invite you to join us in the online support community, where you can connect with hundreds of other people experiencing similar symptoms, situations, experiences, and emotions. Sign up today!

Pelvic Floor Dysfunction Featured on The Dr. Oz Show
5/1/2014

ICA is excited to announce a very special guest on the April 29 episode of The Dr. Oz Show - our friend, physical therapist Amy Stein, who specializes in treating pelvic floor dysfunction. She addressed pelvic floor dysfunction symptoms and causes, as well as stretches that can be done at home as treatment. Amy Stein also recently released a DVD called, Healing Pelvic and Abdominal Pain: the ultimate home program for patients and a guide for practitioners, which can be purchase on Amazon here. When purchasing through this link, a portion of every sale is donated to ICA.

IC Mentioned in Health Magazine
5/1/2014

The May issue of Health magazine contains a short article that discusses a range of different urinary tract issues, including IC. ICA hopes discussion of IC in a publication with such large readership will help raise awareness of IC. 

Free Webinar - IC Diet: Friendly Fats
5/1/2014

Tired of hearing about all the things you should not eat? The good news is that recent research has shown that some fats – which are usually all lumped into one group and marked “off limits” need to be reconsidered. It turns out that the essential omega 3 fatty acids may help us feel better and should be increased in our daily diets. Sessions from ICA’s 2013 Patient Forum were recorded and are available for viewing free-of-charge, including this one on IC diet featuring Barbara Shorter, EdD, RD, CDN, Long Island University, Brookville, NY. In this webinar, you’ll learn about the anti-inflammatory properties of the fats in fish, walnuts,canola oil, olive oils, and many other delicious foods, and the hopes for their role in mitigating chronic pain.

Be sure to check ICA’s Facebook page this weekend for IC-friendly recipes. Do you have a great recipe that is IC friendly? If so, please share it with ICA.

Survey Closes on May 7 @ 12:00pm
5/1/2014

Respect, openness, and honesty are key components of any healthy relationship. ICA would like to know about your relationship with your healthcare provider. What do you feel makes for a great relationship with your physician? Please let us know by May 7 by taking our Healthcare Provider Relationship survey. The results will be published in the Summer 2014 ICA Update, which will be a special issue written specifically for healthcare providers.

Response to Dr. Drew Pinsky
5/1/2014

On a recent podcast, Dr. Drew made some extremely insensitive comments about endometriosis and IC. He subsequently apologized on a later show and promised to do a separate podcast devoted to endometriosis. ICA is offended and disappointed by Dr. Drew’s comments and has requested that he also produce a podcast on IC. We hope he will turn this into a positive awareness and education opportunity for greatly misunderstood and life altering conditions.

ABC News National Tweet Chat on Pain Management
4/21/2014

Join the ABC News National Tweet Chat on Pain Management on Tuesday, April 22 at 1 p.m. Eastern. They will be discussing a range of topics including chronic pain and palliative care. You can join the conversation and get into the chat in three easy steps: http://abcnews.go.com/Health/Wellness/dr-bessers-live-twitter-chat-join/story?id=18343653

New Additions to ICA Reading List
4/17/2014

Think you’ve seen and read every video and book about IC? Not so fast! There are two new releases on ICA’s Reading List you’ll want to check out:

Amy Stein, DPT, BCB-PMD, Healing Pelvic and Abdominal Pain: the ultimate home program for patients and a guide for practitioners.

Mary Ruth Velicki, MS, DPT, Healing Through Chronic Pain, A Physical Therapist’s Personal Journey of Body, Mind, Spirit Transformation.

Note: A portion of the Amazon sales made through ICA’s Reading List support ICA’s work in research, education, and patient advocacy.

Do you have a good resource you don’t see on ICA’s reading list that you can recommend? Let us know and we’ll review it for a possible addition. Your contributions to the IC community are appreciated! 

IC Support Group Season is Ramping Up Again!
4/10/2014

Do you live in northwestern Illinois? Are you looking to meet, face-to-face with other IC patients? If so, consider attending the NW Suburban Illinois IC Support Group hosted by ICA’s Board of Directors Co-Chair, Barbara Zarnikow. The group will meet on Monday, April 14, 2014. There will be two guest speakers: The National Institute of Diabetes and Digestive and Kidney Diseases's (NIDDK) Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Researchers, Dr. David Klumpp and Dr. James Griffith. Email bzarnikow@aol.com for more information.

ICA is excited to announce the creation of a new support group in northern Vermont (Burlington area). Email Diana Dunn (dianaddunn@gmail.com) for more information.

If there aren’t any IC support groups in your area, be sure to check out ICA’s online support community.

ICA Patient Forum Sessions Webinars Still Available
4/10/2014

Be sure to view the recorded sessions from ICA’s 2013 Patient Forum. Listen to many prominent experts in the field of IC research and treatment in these sessions, called “truly empowering” by those who attended the live event. Gain a wealth of information from these free resources.

ICHope Self-Management Module
4/10/2014

In March, ICA launched the new and interactive program, ICHope Self-Management Module, created uniquely for IC patients. With this free online program – the first of its kind – patients can learn to better manage their IC pain. To use ICHope, visit www.ichelp.org/ichope.

Let Us Know What You Think
4/10/2014

ICA is interested in knowing where you get information about IC and its related conditions so we can provide the IC community with the best information available. You can help ICA by joining the hundreds of others who have already taken the short survey.

Don’t Tell Me What I Can’t Do
4/10/2014

There are so many reasons to feel hopeful. Read the newest personal Voices of Hope story. Everyone has a story. Please share yours with others. You never know who you might help.

“Hope is a good thing, maybe the best of things, and no good thing ever dies.” ― The Shawshank Redemption
Drug Disposal Event
4/10/2014

The common behavior of flushing old or expired medications down the drain is dangerous and bad for the environment. Dispose of unused or expired medications properly on Saturday, April 26 from 10 a.m. until 2 p.m. Visit www.dea.gov, or call 800-882-9539 for more details.

ICA Billboard Scavenger Hunt
4/10/2014

Have you seen an ICA billboard in your city? There are now nearly 1,000 all around the country. Check out the Get the Facts page to find the IC billboards nearest you. Send us your photos and join our efforts to help spread the knowledge about IC through your social media channels.

ICA in the News
4/4/2014

ICA has made many appearances in the media recently. Lee Bryan Claassen, CAE, ICA’s Executive Director, had an article published online on Mediaplanet’s cross-platform Women's Pelvic Health Campaign. In addition to online, Ms. Claassen’s article was also featured as part of a 12-page print publication within the LA Times on Saturday March 29th. Combined, it is hoped that this will reach as many as 3 million readers! ICA has caught the attention of Prevention magazine, where ICA’s website is mentioned as a resource in the April issue. The Sjögren’s Syndrome Foundation also published a piece on IC and ICA in the March 2014 issue of their newsletter.

ICA Annual Capitol Hill Visit
3/20/2014

Members of the ICA Board of Directors, ICA staff, and IC patient advocates brought the voice of the more than 12 million men, women, and children with IC to Capitol Hill on March 11. Nearly 30 Congressional offices representing 9 states were educated about the needs of IC patients everywhere and were asked to support the following in the fiscal year 2015 budget:

  • Overall funding for the National Institutes of Health (NIH) at a level of $32 billion and invest in basic science, disease pathology, and clinical trials on IC.
  • Maintain the Centers for Disease Control and Prevention (CDC) IC Education and Awareness Program.
  • Include IC on the list of eligible conditions for study in the Department of Defense (DOD) Peer-Reviewed Medical Research Program in the Defense Appropriations Bill.

Join us in our efforts and check out the ICA advocacy toolkit for everything you need to know on how to become an IC advocate.

New Leaders Added to ICA Board of Directors
3/20/2014

The Interstitial Cystitis Association is pleased to announce three new additions to its Board of Directors who will lead, advise, and support the activities of ICA for a three-year term:

Jann KeenanJann Keenan, EdS is a health literacy specialist and active community volunteer. Since 1995, she has served as President of the Keenan Group, Inc., a social marketing and multi-media design firm. Jann is also a strategic partner with the Institute for Healthcare Advancement. To promote health equity, Jann develops culturally relevant educational materials and curricula. She helps agencies adopt policies to create system-wide change as they work toward becoming health literate organizations. She received her EdS degree in instructional design from Indiana University, Bloomington, IN. An IC patient, Jann and her family call Maryland home.

Rick LufkinRick Lufkin is a serial entrepreneur in the life sciences specializing in early stage pharmaceutical, biotechnology, and medical device companies. He currently serves as CFO and director of a firm exploring and advancing real-time protein identification. As president of a specialty pharmaceutical company, he was involved with the early drug approval process for Elmiron® working closely with IC patients, physicians, and regulatory authorities. Rick is an MIT graduate with an MBA from the Wharton School, University of Pennsylvania. He and his wife live in New Jersey.

Joy SelakJoy H. Selak, PhD, became too ill to work after being diagnosed with interstitial cystitis and other autoimmune and neurological conditions at 40. She found effective, supportive care and asked her physician to co-author a book with her about their shared experience. You Don’t LOOK Sick!: Living Well with Invisible Chronic Illness is now its second edition. In 2010, Joy underwent a successful surgery and began to regain her health. After 20 years of illness, she is now working for an arts education non-profit and is committed to helping others build meaningful lives with long term illness.

More Cities with IC Billboards
3/19/2014

New IC billboards have recently been posted in CA, KY, LA, NJ, and NM. Check out the Get the Facts page to find the IC billboards nearest you. Please join our efforts and help spread the knowledge about IC through your social media channels.

ICHope – Your Tool for Managing IC Pain
3/18/2014

ICA is excited to announce the release of our newest complimentary online program, ICHope Self-Management Module. This free interactive program – the first of its kind – is designed to help IC patients learn to better manage their IC pain by adopting healthy, positive behaviors to prevent or minimize pain and to cope with pain that does occur. In addition, it shows patients how to implement these strategies — at their own pace, when they are ready — to help manage pain from IC. ICHope was created uniquely for IC patients, who, along with ICA staff and experts in the community, were integral in the development of this program. Are you ready to manage your pain? To get started, visit www.ichelp.org/ichope and learn more about ICHope.

New ICA Online Support Community – Sign Up Today
3/5/2014

Interstitial Cystitis Association Support CommunityThe Interstitial Cystitis Association (ICA) is very excited to announce the launch of our new Online Support Community. ICA’s Online Support Community is a place of peace, hope, and advice providing comfort for patients, family members, friends, and healthcare professionals looking for ways to better understand the impact of IC. It will provide strength in numbers for those living with IC. ICA’s Online Support Community is a secure, peer-to-peer, moderated forum where topics like "Living with IC," "IC Diet," and "Management of IC Pain" are frequently discussed. We invite you to join us in the community, where you can be connected to hundreds of other people experiencing similar symptoms, situations, experiences, and emotions.

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ICA Restructures Membership Program
3/4/2014

ICA has restructured its membership program to give you more benefits and a greater variety of support options. As a $50 Supporter, you’ll be kept abreast of the latest IC research, news, and ICA announcements. You’ll also receive online access to ICA brochures and fact sheets, a downloadable restroom access card for printing, and online access to the two most recent issues of ICA Update. As a $100 Advocate, you’ll get all that plus online access to ALL past issues of ICA Update. Go to www.ichelp.org/donate to learn more.

ICA Launches “Get the Facts” Awareness Campaign
3/4/2014

Urgency… frequency… bladder pain… You know the symptoms of interstitial cystitis (IC), but unfortunately many men and women suffering with these symptoms do not. This is why the Interstitial Cystitis Association (ICA) is in the process of launching IC awareness billboards across the nation! Spreading IC awareness means fewer men and women will go undiagnosed and untreated—suffering with IC symptoms alone.

So get your cameras ready! Nearly 1,000 of these billboards will be released and we want your photos of the IC billboards in your city or town! Have you seen one in your neighborhood yet? Send us your photos to icamail@ichelp.org or share them on the ICA Facebook page. Stay tuned for more information regarding the locations of the billboards and how you can help us spread IC awareness. Together, we can make a difference.

ICA’s “Truly Empowering” Patient Forum Sessions Still Available
3/4/2014

The “truly empowering” sessions from ICA’s Patient Forum are still available for viewing on demand in the Patient Forum section of the ICA website. They are also available, along with many other audio and video resources, in our Virtual Patient Education section.

ICA Attends Second Annual Meeting of PAINS
2/13/2014

ICA Executive Director, Lee Claassen attended the Second Annual Meeting of the Pain Action Alliance to Implement a National Strategy (PAINS) held January 26 – 28 in Washington, DC. PAINS is a consortium of leaders working in professional societies, patient advocacy organizations, policy groups, consumers, payers, and the private sector working together toward a common vision and mission to transform the way pain is perceived, judged, and treated. With 100 million Americans living with chronic pain (more than those with diabetes, heart disease, and cancer combined), PAINS’ primary goal is to establish chronic pain as a public health priority. The meeting gathered more than 90 leaders from the U.S. Department of Health and Human Services (HHS), other policy makers, funders, and other key stakeholders to review and discuss the state of pain, the importance of a public health approach, promising innovations/projects, and what it will take to establish chronic pain as a major public health issue. For more information visit www.painsproject.org.

ICA Represented at Urology Policy Forum Strategic Planning Meeting
2/13/2014

On January 30, Lee Claassen, ICA Executive Director represented ICA at the Urology Policy Forum Strategic Planning Meeting in Washington, DC. The Urology Policy Forum is a coalition of professional societies, patient advocacy organizations, and industry working collaboratively on policy issues of mutual interest and concern, including federal funding for research. At the invitation of ICA, Dr. Robert Star, Director of the Division of Kidney, Urologic, and Hemotologic Diseases at NIDDK addressed the group. Dr. Star provided an overview of the urology research led by his division which provides the foundation for the development of new therapies and treatments that lead to better health outcomes for patients.

The Health Insurance Marketplace: Know Your Rights
1/15/2014

You have certain rights when you enroll in a health plan in the Marketplace. These rights include:

  • Getting easy-to-understand information about what your plan covers, what services cost you out-of-pocket, what drugs it covers, and what providers are in its network
  • Getting coverage for emergency services
  • Getting coverage for a prescription drug that’s not normally covered by your plan
  • Appealing a health plan’s decision not to pay a claim

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ICA Holiday Schedule
12/20/2013

ICA’s office will be closed for the holidays starting December 21, 2013 and will reopen on January 2, 2014. Our website, www.ichelp.org, has many resources to assist you during this time. You can email us at icamail@ichelp.org and an ICA staff member will reply to your message within two to three business days. You can also find support on the ICA’s Facebook page http://www.facebook.com/InterstitialCystitisAssociation.

Surviving the Holidays with IC
12/12/2013

Surviving the holidays stress-free (or with as little stress as possible) can be difficult for anyone. However, keeping stock of your stress is even more important when you have a chronic condition like IC. In fact, stress is the second most common trigger of IC flares, second only to diet. ICA has compiled some important tips to help those with IC get through the holiday season as stress-free and pain-free as possible.

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Matching Challenge Grant Increased
11/25/2013

Meet the Challenge and Double Your Impact
Challenge Amount Increased

Thanks to your generous support, we have been successful in meeting the challenge and our generous donor has has raised the matching grant amount to $75,000! With this unique opportunity, every contribution to the ICA Pilot Research Program up to $10,000 per individual or organization will be matched by our donor.

Help ICA meet this challenge and double your support.

Share this matching opportunity on Facebook, Twitter, and Pinterest. Or print out the flyer and hand it to your colleagues, friends, and family.

Read more about the matching challenge grant.

Support the Cause While Shopping at Amazon
11/25/2013

Will you be purchasing gifts from Amazon this holiday season? If so, you can support the cause while shopping! Amazon donates a percentage of sales to the ICA if you click through this special link to Amazon.

ICA at AUGS and IPPS Annual Meetings
10/25/2013

Last week, the Interstitial Cystitis Association (ICA) attended the International Pelvic Pain Society (IPPS) Annual Scientific Meeting in Orlando, Florida. The meeting provided attendees with a detailed overview on the evaluation and management of chronic pelvic pain disorders. Attendees included physical therapists, gynecologists, urologists, nurse practitioners, surgeons, psychologists, and researchers.

The ICA team also attended another meeting last week— the  (AUGS) 34th Annual Scientific Meeting in Las Vegas, Nevada . The meeting was designed to show the latest advancements, research, and technologies in urogynecology—a sub-specialty of urology and gynecology and a growing part of the IC healthcare team.

At both meetings, ICA sought to bring IC awareness and education to the multidisciplinary groups. And, we were successful!

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The Doctors TV Show Features IC
10/25/2013

On Monday, October 14, The Doctors TV show featured Elizabeth Bingenheimer, a mother of two with IC. Elizabeth’s feature was the result of months of emailing celebrities, TV shows, and news shows asking them to help raise IC awareness.

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New Online Program Helps IC Patients Manage Pain
10/2/2013

ICHope Self Management Module
A Staged Approach to Managing IC Pain

ICA understands how difficult it can be to manage IC pain—whether it is severe or mild pain or pain that comes and goes. This is why ICA is excited to announce the release of ICHope Self-Management Module. In partnership with Pro-Change Behavior Systems, Inc., ICA has developed this complimentary, personalized online program designed to help people diagnosed with IC manage their pain. ICHope is based on the science of behavior change, which asserts that people go through a series of stages in the process of changing their behavior. IC patients can use ICHope to assess which stage of change they are in and then receive stage-matched strategies to help them adopt positive behaviors to prevent or minimize pain and to cope with pain that does occur.

“As a patient, I know just how invasive IC pain is—often affecting every aspect of an IC patient’s life,” says ICA Board Co-Chair and ICHope consultant, Barbara Zarnikow. “Enabling patients with the tools they need to take charge of their pain not only improves their health, it allows them to regain control in their life. I think I speak for every patient when I say how truly exciting this one-of-a-kind program is for those experiencing IC pain.”

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FDA’s Latest Ruling on Opioids Good for Chronic Pain
9/19/2013

The role of opioids in treating chronic pain conditions like interstitial cystitis (IC) has been an increasingly common subject of public discussion over the past few years. The Food and Drug Administration (FDA) and other policymakers have been trying to find a balance between decreasing opioid drug abuse and misuse, while allowing appropriate access to these pain-relieving drugs.

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Your Support Makes a Difference
9/19/2013

Last week, we announced that a donor has presented ICA with a $50,000 matching challenge grant. With this unique opportunity, every contribution to the ICA Pilot Research Program up to $10,000 per individual or organization will be matched. Read just how your generous donations make a difference!

IC researcher Michael Chancellor, MD, Beaumont Hospital, received an ICA Pilot Research Grant a few years back to study how very tiny bubbles of fat can transport pain medication into the bladder. Theses bubbles of fat, known as liposomes, allow the bladder to be coated with a concentrated amount of medication that reduces the extreme bladder pain associated with IC.

As a result of his initial ICA-funded research project, Dr. Chancellor received a $1.6 million research award through the Department of Defense Peer Reviewed Medical Research Program to further study his novel drug delivery system. Dr. Chancellor has explained that he will soon be able to rapidly progress the liposome-based therapy toward a US Food and Drug Administration clinical trial.

Dr. Michael Chancellor is a wonderful example of the importance of the ICA Pilot Research Program. Many ICA-funded research projects go on to receive larger funding from federal agencies. Thanks to this funding, IC researchers are able to advance the understanding of IC and pursue studies to find better diagnostic and treatment options for IC.

We hope you will continue to support the ICA Pilot Research Program, as IC researchers face many challenges in receiving the initial funds to study IC. Please support the future of IC research today. Every dollar you contribute will be matched—doubling the impact of your donation.

ICA—Voice of the Millions with IC
9/19/2013

In the September 2013 issue of Elle magazine, one of ICA’s favorite experts, Amy Stein, MPT, was interviewed on the benefits of pelvic floor physical therapy for the article Let Who Put What Where (available in print only). We congratulate Stein for bringing awareness to this form of treatment and encourage you to read Amy’s interview with Elle.
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Find an IC Healthcare Provider in Just a Few Clicks
9/5/2013

When you have interstitial cystitis (IC), finding the right healthcare provider is key to the successful management of your condition. The free Interstitial Cystitis Association (ICA) Healthcare Provider Registry, now online, is a great way to begin your search. Containing over 1000 healthcare providers, including physicians, nurse practitioners, physical therapists, dietitians, and counselors, the Registry will provide you with the information you need to build your IC healthcare team—in just a few clicks!

To get started, you will need to register or login to the ICA website. It is free to register and will take less than 5 minutes to complete.

Look for more free online tools to roll out on the ICA website in the coming weeks. To continue providing these helpful tools to you at no cost, your generous support is needed. Consider donating to the ICA Annual Fund. Your gift will make a difference!

Meet the Challenge and Double Your Impact
9/5/2013

The Interstitial Cystitis Association (ICA) is excited to announce that a generous donor has presented ICA with a $50,000 matching challenge grant. With this unique opportunity, every contribution to the ICA Pilot Research Program up to $10,000 per individual or organization will be matched by our donor.


Help ICA meet this challenge and double your support.


Share this matching opportunity on Facebook, Twitter, and Pinterest. Or print out the flyer and hand it to your colleagues, friends, and family.

Read more about the matching challenge grant.

More IC Research Funded by ICA
8/22/2013

Funding awarded through the ICA Pilot Research Program provides researchers with grant monies needed to get their projects literally “off the ground.” And without research, there is no hope for finding answers to what causes or may cure IC. ICA is proud to announce the preliminary findings of two studies recently funded by the program.
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IC Research Funding Available for Nurse Practitioners
8/22/2013

The Interstitial Cystitis Association (ICA) often partners with other organizations to fund IC research. These partnerships ensure that the entire IC medical community has an opportunity to participate in research as it’s not only urologists who manage and treat IC. Through collaboration with the American Urogynecological Society (AUGS), ICA recently awarded urogynecologist Dr. Melinda Abernethy from Northwestern University $10,000 for her clinical research project on the biology of irritative bladder symptoms.

This year, ICA is pleased to announce another joint research grant, this time with the American Nurse Practitioner Foundation (ANPF). One (1) $10,000 grant will be awarded to a nurse practitioner interested in the following research topics:

  • Advancing the understanding about the underlying mechanisms, optimal treatments and clinical practice models, and epidemiology of IC.
  • Research involving treatment clinical practice models across the multidisciplinary IC treatment team is encouraged.

The application submission deadline is September 26, 2013. For more information on eligibility and how to apply, visit the ANPF’s website.

Not a nurse practitioner? Please share this information with the nurse practitioners in your IC healthcare team.

Help Us Spread FREE IC Education in the Medical Community
8/22/2013
Patients should also take advantage of this complimentary educational program! Read the CME monograph and view the CME podcasts to learn more about managing IC.

Check out the latest in IC medical education! Conquering IC: Identification and Management Strategies is a continuing medical education (CME) program developed by ICA in partnership with the American Urogynecologic Society (AUGS) and in cooperation with The France Foundation and the Nurse Practitioner Alternatives. This innovative, online educational program, located on www.ichelpcme.org, provides an interdisciplinary audience with comprehensive continuing education on identification and management of IC patients; both the course and CME credit are free of charge to participants. “We’re extremely excited to be able to offer such a concise and convenient IC education program for healthcare providers,” says ICA’s Executive Director, Lee Bryan Claassen, CAE.

Why is this program so important? "It is critical that healthcare providers diagnose IC at the earliest possible stage to help limit the suffering that IC patients have,” explained Jeffrey Proctor, MD Chair of the CME, who is also an ICA Medical Advisory Board member. “This CME will help educate healthcare providers on the signs and symptoms of IC, so they can confidently recognize and treat IC patients."

One of the biggest complaints we hear from newly diagnosed IC patients is that they cannot find a knowledgeable healthcare provider to help them manage their symptoms. Many patients are still told that IC is “all in their head.” Educational programs like this CME help to spread IC education and awareness in the medical community; however, we need your help getting the word out. Be an advocate and share Conquering IC: Identification and Management Strategies (now accessible on mobile devices) with the medical providers in your IC healthcare team.

Have an IC Question?
8/22/2013

Have an IC Question? Why not look through ICA’s growing list of Frequently Asked Questions? ICA staff and volunteers reach out to IC experts to answer questions from patients, healthcare providers, researchers and the public. Also, many of the questions have been answered in the various educational programs ICA has developed. Check out some of the most commonly asked questions about IC. This is a free service ICA provides and is only made possible through your support.

ICA Recruiting Volunteers for Board of Directors
7/30/2013

Apply by August 16, 2013

The Interstitial Cystitis Association (ICA) is recruiting knowledgeable, engaged, and inspired volunteers to lead, advise, and support the activities of ICA by serving on its Board of Directorsfor a three-year term. The Board meets four times annually of which three meetings are conducted by teleconference and one meeting is conducted in-person/face-to-face.

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IC Featured in “To Your Good Health”
7/30/2013

On Saturday July 27th, author and practicing internist Dr. Keith Roach featured IC in his medical advice column, “To Your Good Health.” The column, syndicated in over 150 newspapers around the country, featured the story of a woman who manages her IC with bladder instillation, Elmiron (pentosan polysulfate sodium), and Interstim (neuromodulation). Dr. Roach thanked the patient for sharing her experience with IC and mentioned the ICA as a “great resource for those with [IC].”

ICA would like to thank Dr. Roach for addressing IC in his column and spreading IC awareness. The more people know what is causing their urinary urgency and frequency and bladder pain, the less they will go undiagnosed and untreated, and potentially suffering with IC symptoms alone. Join us in thanking Dr. Keith by visiting his Facebook page. Tell him ICA sent you!

ICA Honors Volunteers
7/25/2013

Beth Getz

The ICA has been fortunate to have many wonderful volunteers over the years. We would like to pay tribute to two who are no longer with us. Their contributions to the IC community will never be forgotten. We are grateful for their support and the continued support of their families.

Both of these women shared their stories in ICA's book The Many Faces of IC, Vol. I. Read more about the legacy these women have left behind.

You can honor the lives of Betty, Beth, and others in the IC community who have passed away by making a memorial donation. Memorial donations to the ICA give hope to the millions of people with IC and their families by providing funding for IC research, advocacy, and education programs.

If you know of an IC patient who has passed away and would like to add their story to the ICA memorial page, please send it to icamail@ichelp.org.

“Some people come into our lives and quickly go. Some stay for a while, leave footprints on our hearts, and we are never, ever the same.” ― Flavia Weedn

Men – We Want to Hear From You
7/18/2013

For the next issue of the ICA Update, we would like to feature males in the IC community. If you are a man with IC, or a male caregiver (including husband, boyfriend, father, son, brother, cousin, nephew, friend) of an IC patient and are interested in being interviewed and featured in the next issue, we’d like to hear from you. Please email aroach@ichelp.org with a brief summary (500 words or less) of your experience as a caregiver or patient. In the email, also include your full name, phone number, and the best time of day to reach you.

We look forward to hearing from you!

ICA Forum Named “Truly Empowering” By Attendees
7/18/2013

The Interstitial Cystitis Association (ICA) hosted the 2013 Patient Forum in Philadelphia on Saturday, June 29th. This educational event empowered patients and caregivers with the need-to-know tools for successful management and treatment of interstitial cystitis (IC). The Forum was a tremendous gathering of over 125 patients, caregivers, family members, healthcare providers, IC researchers, pharmaceutical representatives, and those with an interest in IC, united by the mission to empower IC patients with knowledge and hope.

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12,000 for 12 Million
6/21/2013

ICA FacebookBack in 2009, the Interstitial Cystitis Association launched the ICA Facebook Page—an online community where patients can get support and discuss the challenges of living with bladder pain, urgency and frequency. Over the years, it has also been one of several ways ICA communicates with IC patients and caregivers. Thank you for helping our community reach 12,000+ “Likes,” which is representative of the 12 million+ Americans who live with IC. Help us to continue to spread IC awareness online by sharing the community with your friends and family.

New ICA Educational Program for Healthcare Providers
6/14/2013

In partnership with the American Urogynecologic Society (AUGS) and The France Foundation (TFF), the Interstitial Cystitis Association (ICA) has released its newest continuing medical education (CME) program, Conquering IC: Identification and Management Strategies. Located on www.ichelpcme.org, this educational program provides an interdisciplinary audience with comprehensive continuing education on identification and management of patients with IC – a chronic bladder condition that usually consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency and urgency.

Educational opportunities like the ICA CME teach healthcare providers about the most current approaches in the diagnosis, treatment, and management of IC, which may translate into better symptom control and improved outcomes for patients with IC.
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ICA Back on the Hill
6/14/2013

June 4—ICA Board Co-chairs Eric and Barb Zarnikow, ICA Board Members Neal Thompson and Tony Tyler, ICA Executive Director Lee Claassen, ICA staff and other IC advocates travelled to Capitol Hill to educate Congress about the needs of the more than 12 million men, woman, and children with IC.
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Celebrate National Men’s Health Week
6/14/2013

Men get IC, too! In fact, new studies have shown as many as 2 to 4 million American men may have IC. National Men’s Health Week, June 10-16, which ends with Father’s Day, is a wonderful time to focus on how men with IC can take care of their health for themselves and for the well-being of their families. If you are a man with IC, take a look at the wonderful resources we have for you:

Not a man with IC? Be sure to share these resources with the IC man in your life.

The ICA is planning to add even more resources for men and IC in the near future. Until then, be sure to take a look at the other resources we have that are helpful to both men and women with IC, including IC diet information, IC treatment guideline, IC reading lists, and more!

Be Your Own Best Advocate
5/23/2013

Join the Interstitial Cystitis Association (ICA) in ensuring optimal care with dignity for all those affected by interstitial cystitis (IC) by becoming your own best advocate. Policy makers want to hear from you! Two recently launched websites can help you make your voice heard.

The Food and Drug Administration (FDA) Patient Network website welcomes the unique perspective of patients, family members, caregivers, and patient advocates directly affected by conditions such as IC to assist with the Agency’s decision-making processes. The site also educates patients and caregivers on the drug and device approval process, clinical trials, investigational drugs, promising treatment options, off-label drugs, and new FDA approvals — all written in plain language.

The State Pain Policy Advocacy Network (SPPAN) website educates patients with up-to-date information about pain management-related policies and provides the tools and resources needed to engage state-level officials on the topic of chronic pain.

Please let us know if you want more information on participating in IC advocacy efforts.

ICA at the Alliance for Pelvic Pain Retreat
5/17/2013

The Interstitial Cystitis Association (ICA) recently attended the Alliance for Pelvic Pain’s two-day educational patient retreat featuring Robert J. Echenberg, MD, FACOG, Deborah Coady, MD, FACOG, Amy Stein, MPT, BCB-PMD, Nancy Fish, MSW, MPH, and Alexandra Milspaw, MEd, LPC. The specialists combined expert knowledge to provide attendees with the necessary tools to successfully manage chronic pelvic pain (CPP).
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Celebrate National Women’s Health Week
5/17/2013

It’s time, again! ICA Celebrates National Women's Health Week.

Why would a woman with IC want to celebrate National Women’s Health Week? Well, 3 to 8 million women in the United States may have IC. Women are often the caregivers for their loved ones, putting the needs of their spouses, partners, children, and parents before their own. Because IC is a chronic illness, self-care is very important. This week serves as a reminder to put your health first!

Get more information on screening tests for women, choosing healthier foods to eat, how to quit smoking, and more from the National Women’s Health Week team.

ICA Patient Forum Registration Now Open
5/8/2013

Empowering IC Patients with Knowledge and Hope

Interstitial Cystitis Association (ICA) invites you to attend the 2013 Patient Forum: Empowering IC Patients with Knowledge and Hope on Saturday, June 29, 2013 starting at 7:15AM at the Loews Philadelphia Hotel. Located in the heart of historic Philadelphia, this complimentary ICA Forum will empower patients and caregivers with the need-to-know tools for successful management and treatment of IC. Experts in IC will present the latest information on physical therapy, research, intimacy, opioids, diet, and integrative medicine. The Forum will close with the ground-breaking session, When Treatment Options Fail—a must see for anyone frustrated with standard IC treatments.

Or you can register to watch the live event from the comfort of your own home. We will be broadcasting live!

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Next Stop – American Urological Association Annual Meeting!
5/3/2013

Interstitial Cystitis Association (ICA) representatives have been on the road for the past few weeks! The ICA has recently attended back-to-back meetings hosted by the US Pain Foundation and the Alliance for Pelvic Pain in order to spread interstitial cystitis (IC) awareness to the general public and education to patients that suffer with interstitial cystitis and overlapping conditions. Next stop—the American Urological Association (AUA) Annual Meeting in San Diego, CA. This meeting brings together international experts to discuss the latest discoveries and advances in urology and translate these findings into clinical practice. Throughout this week-long event, ICA will be reporting from the floor of the meeting, updating patients, healthcare providers, and others who are unable to attend the meeting about the latest in IC. ICA will also be unveiling its newest continuing medical education (CME) tool, Conquering IC: Identification and management Strategies. Tell your IC healthcare provider to stop by ICA’s booth, # 5053, for more information!

Throughout the meeting, ICA will keep you posted on breaking news in IC through the ICA Facebook and Twitter communities. Next week, look out for full reports on both the AUA meeting and the Alliance for Pelvic Pain Patient Retreat.

ICA Attends a Patient Summit on Pain
4/26/2013

On Sunday, April 21, Interstitial Cystitis Association (ICA) representatives attended A Patient and Family Day to Learn about Managing Pain summit co-hosted by US Pain foundation and The New York Pain Society. About 100 chronic pain patients with conditions such as chronic migraine, fibromyalgia, and interstitial cystitis (IC) were in attendance to learn about a variety of topics in chronic pain management. Below are some of the highlights from this educational summit held in White Plains, NY.

Opioids—Good for Some but Not All

Charles E. Argoff, Professor of Neurology at Albany Medical College and Director of the Comprehensive Pain Center at Albany Medical Center in New York, opened the summit with a session on the use of opioids in chronic pain management. Dr. Argoff stressed that it is important for patients and healthcare providers to work as a team when it comes to pain management. Clinicians need to be educated on the use of opioids for chronic pain. They also must thoroughly assess their patients, since not every pain patients is a good candidate for opioids. Assessment should include:

  • Diagnosis of pain (above and beyond the typical pain scale)
  • Identification and treatment of the causes of pain
  • Identification and treatment of co-morbid conditions
  • History of substance use (including tobacco) and abuse

For optimal pain management, chronic pain patients must have an open dialogue with their healthcare provider. They need to share their complete medical and prescription history. It is also important that patients trust and are honest with their healthcare provider.

What if opioids do not relieve a patient’s pain? There are several steps that can be taken to improve pain relief with the use of opioids, explains Dr. Argoff. There are many different categories of opioids. Healthcare providers may need to adjust the type of opioid their patient is using. Dosage is another factor that may need to be adjusted if a patient’s pain persists. Patients may likely need to take other medications, in conjunction with opioids, to maximize pain relief.

Lastly, if a patient is still not experiencing pain relief, or if they are experiencing side effects that cannot be managed, patients and their healthcare provider must plan for an opioid “exit strategy.” This strategy includes using alternatives to opioids for pain management.

A Holistic Approach to Pain Management

As with opioid pain management, holistic pain management begins with a good partnership between patients and their team of healthcare providers, explains Andrea Wolkenber, PT, MA, Founder and President of Spine Solvers Inc., New York, NY. Wolkenber explains that patients are complex whole beings that need to factor the mind, body, and spirit when treating pain. Holistic approaches to pain management include:

  • Mind-body medicine approaches that focus on how the mind and body interacts (Art therapy, music therapy, guided imagery, hypnosis, mindfulness meditation, exercise, etc.)
  • Energy medicine approaches that adhere to the concept that all people have subtle energy fields within them that they emit (acupuncture, ayurveda, biofeedback, etc.)
  • Manipulation and body-based practices (Alexander technique, physical therapy, chiropractic manipulation, etc.)

Holistic specialist, Bill Connington, Founder of the The Alexander Technique Organization, New York, NY also presented at the Summit and led the eager audience in a group Alexander Technique session. The technique may be especially helpful for people who suffer with chronic pain, postural problems, and movement restrictions. The technique was truly a hit among the group. (Watch a demonstration of the Alexander Technique by The Mayo Clinic.)

ICA would like to thank the US Pain Foundation and The New York Pain Society for holding the educational Summit. It is important that those who suffer from chronic pain conditions like IC and those who care for these patients are educated on the many aspects of pain management. Be sure to check out the ICA’s own patient education event, Empowering IC Patients with Knowledge and Hope.

A Patient & Family Day to Learn About Managing Pain
4/16/2013

Join the Interstitial Cystitis Association (ICA) on Sunday, April 21 as we attend "A Patient & Family Day to Learn about Managing Pain” presented by US Pain Foundation and The New York Pain Society. This one day event is a great opportunity to learn more about pain management, meet other people who suffer with chronic pain, and connect with organizations like the ICA dedicated to the pain community. Some of the topics of the event include:

  • Holistic pain management
  • What to expect when you visit a pain specialist
  • Chronic pain in your body
  • Migraines & headaches
  • Injections for pain
  • Safe use of opioids
  • Advanced options to manage pain

Price: $10 (includes lunch)
Location: Renaissance Westchester Hotel, West Harrison, NY 10604
Time: Check in begins at 8 am; Program starts at 9 am

Sign up today and be sure to stop by the ICA’s booth at the event. We hope to see you there!

Viewers Give ICA Webinar 4.7 out of 5 Stars
4/11/2013

Last week, the Interstitial Cystitis Association (ICA) hosted a free webinar presented by Robert J. Echenberg, MD, FACOG, entitled IC’s Role in CAPPS. Thus far, 475 people have viewed the 90 minute information-packed webinar. Some of what was discussed in the webinar included the multi-disciplinary and holistic approach that is needed to most effectively treat chronic pelvic pain, what Dr. Echenberg gives to every new patient, and why it is important to “turn down the dial” on pain.

During the webinar, Dr. Echenberg also answered viewers’ questions. Our gracious presenter will address questions that were not answered during the webinar due to the time limit. So keep an eye out because we will be posting a list of questions and answers on www.ichelp.org soon.

Until then, be sure to check out the webinar which is now available at any time for your viewing pleasure. If you have already viewed the webinar, make sure you share it on Facebook or Twitter with your colleagues, friends, and family. And if you have yet to see it, don’t miss what is being called a “wonderful, comprehensive, compassionately delivered, informative webinar” by viewers!

Special thanks are in order for Dr. Echenberg for presenting this useful educational webinar to the IC community. And thank you to our generous sponsor, Innovation Compounding whose generosity made the program possible.

Save-the-date: ICA Patient Forum this June
4/11/2013

Thought the ICA webinar was good? Well, this next ICA event is another must see! Mark your calendars for the ICA’s upcoming Patient Forum: Empowering IC Patients with Knowledge and Hope on Saturday, June 29th in Philadelphia, PA. The intent of this all-day, free educational event is to empower IC patients and their loved ones with the knowledge they need to successfully manage and treat IC. Experts in the IC community will cover topics that include:

The forum will close with the ground-breaking session, “What to Do When Standard Treatments Fail.”

More details are coming soon, so make sure you are connected with the ICA so you don’t miss any announcements regarding this free event. Get connected by becoming a member, liking us on Facebook, and following us on Twitter.

Your contributions make these free events possible. Donate today to support the only non-profit health association dedicated to improving the quality of healthcare and lives of people living with IC.

More Cities with IC Billboards—Keep Your Photos Coming!
4/11/2013

Last week, ICA Executive Director, Lee Claassen, CAE, and Program Manager, Nicki Mehall, traveled to New Oxford, PA to see an IC billboard up close and in person. In order to spread IC awareness, the ICA team took photos of their billboard visit to share with us. To view their photos of the New Oxford billboard and other billboard photos that have been submitted from around the country, go to the Get the Facts Photo Gallery.

New IC billboards have been recently posted in OH, GA, CT, MA, and NJ. Check out the Get the Facts page to find the IC billboards nearest you. The photo contest is open, and there are still $25 Amazon gift cards up for grabs. Submit your photo to be one of the four who win a prize.

Do you want to spread IC awareness but do not have a billboard in your area yet? We have now expanded our awareness campaign to Twibbon. Twibbon is a fast and easy way to show your support of the IC cause and to spread IC awareness through social media. Be sure to post a message on the ICA’s Facebook community to let us know you are using the IC Twibbon.

ICA Places Over 1,000 Billboards
3/25/2013

ICA released over 1,000 billboards at the beginning of March to help those suffering from IC symptoms, reccurring frequency, pain, and urgency, take the steps to receiving optimal care. The goal of the campaign is to direct viewers to the ichelp.org website where they can get reliable information about IC. Read the full press release here: http://www.prweb.com/releases/ICA/Billboards/prweb10553903.htm

FREE ICA Webinar — Don't Miss It!
3/21/2013

Almost 100 people have already registered, have you? On April 4th, 2013 at 6:30 pm Eastern, the Interstitial Cystitis Association (ICA) will be hosting a FREE webinar featuring Robert J. Echenberg, MD, FACOG, on the role of Interstitial Cystitis/Painful Bladder Syndrome (IC/PBS) in CAPPS. CAPPS…short for Complex Abdominal-Pelvic Pain Syndrome, is a syndrome of nonmalignant origin consisting of a complex of abdominal and pelvic symptoms that includes a variety of painful bowel, bladder, genital, reproductive, muscular, and nerve dysfunctions lasting at least 3-6 months in duration.

In this webinar, Dr. Echenberg will discuss not only the role of IC/PBS’s in CAPPS, but also the multi-disciplinary and holistic approach that is needed in order to most effectively treat what most practitioners call chronic pelvic pain (CPP). He will explain how IC/PBS should be considered as a “major player” in the broader context of “connecting the dots” in this family of all too common and debilitating conditions. Read more about this webinar at www.ichelp.org/ICsRoleInCAPPS.

Have a question for Dr. Echenberg? When registering for the webinar, you have the ability to enter a question you may have regarding IC and CAPPS. Dr. Echenberg will answer these questions during the webinar. You will also have the ability to ask a question during the webinar. These questions will be answered after the webinar and posted on the ICA’s website at a later date.

This ICA webinar is made possible with the generous support of Innovation Compounding.

Trust us—you don’t want to miss this free webinar! Register today!

Two Months in a Row – ICA in USA Today!
3/19/2013

A big thanks is in order for the generous folks at USA Today. For the second month in a row, the Interstitial Cystitis Association (ICA) was featured in the newspaper’s Charity Spotlight! The ICA is the only nonprofit organization that advocates for interstitial cystitis (IC) research, serves as a central IC education hub for healthcare providers, and raises awareness. This feature is a great way to spread IC awareness nationwide. To learn about other ways you can help raise awareness, check out the IC Awareness Toolkit.

ICA Webinar Featuring Dr. Echenberg Coming Soon—Registration is Free
3/14/2013

On April 4th, 2013 at 6:30 pm Eastern, the Interstitial Cystitis Association (ICA) will be hosting a FREE webinar featuring Robert J. Echenberg, MD, FACOG, on the role of Interstitial Cystitis/Painful Bladder Syndrome (IC/PBS) in CAPPS. CAPPS…short for Complex Abdominal-Pelvic Pain Syndrome, is a syndrome of nonmalignant origin consisting of a complex of abdominal and pelvic symptoms that includes a variety of painful bowel, bladder, genital, reproductive, muscular, and nerve dysfunctions lasting at least 3-6 months in duration.

In this webinar, Dr. Echenberg will discuss not only the role of IC/PBS’s in CAPPS, but also the multi-disciplinary and holistic approach that is needed in order to most effectively treat what most practitioners call chronic pelvic pain (CPP). He will explain how IC/PBS should be considered as a “major player” in the broader context of “connecting the dots” in this family of all too common and debilitating conditions. Read more about this webinar at www.ichelp.org/ICsRoleInCAPPS.

Have a question for Dr. Echenberg? When registering for the webinar, you have the ability to enter a question you may have regarding IC and CAPPS. Dr. Echenberg will answer these questions during the webinar. You will also have the ability to ask a question during the webinar. These questions will be answered after the webinar and posted on the ICA’s website at a later date.

This ICA webinar is made possible with the generous support of Innovation Compounding.

Register for this free webinar today!

DOD Funds Research for IC Diagnostic Test
3/14/2013

We’ve done it again! Together, our advocacy efforts have yet again awarded an IC researcher funding from the Peer-Reviewed Medical Research Program (PRMRP) Department of Defense (DOD) funding stream. This time, our efforts resulted in a $750,000 research grant awarded to Sonia Planey, PhD, Commonwealth Medical College, to potentially develop a definitive diagnostic test for IC.

For years, IC researchers have known that antiproliferative factor (APF), a glycopeptide discovered by Dr. Susan Keay, held promise as a diagnostic biomarker for IC. However, there have been no assays developed that are sensitive enough to measure its concentration in patient urine.

“My laboratory has developed a method that we believe will make possible the first measurements of APF in human urine and thus, overcome barriers that have prevented its validation in the past,” Dr. Planey shared with the ICA. “Funding from the DoD is critical to the testing and refinement of this methodology, which we believe could eventually lead to a non-invasive, diagnostic test for IC.”

“Some patients can go years suffering with IC before they are diagnosed and properly treated. Dr. Planey’s research and her team’s work could speed a patient’s time to diagnosis and to earlier, possibly more effective, treatment,” said Lee Claassen, Executive Director of the ICA.

Dr. Planey is extremely grateful to have ICA Medical Advisory Board members, Drs. Susan Keay and Phil Hanno, as collaborators on this project. “I am also very much aware and appreciative of [ICA’s] advocacy efforts. The ICA was the first organization from which I sought funding five years ago for my ideas related to improving IC diagnosis, and although my proposal was not funded at that time, I was introduced to a remarkable organization that is truly passionate about and dedicated to improving the lives of those with IC and that serves as a valuable resource to me as a researcher in the field,” said Dr. Planey.

The ICA will continue to advocate for IC to be included on the list of conditions considered for PRMRP research funding, as receiving funding is critical to discovering better treatments for those who suffer from the disease. Once again, we ask you to join us in our advocacy efforts. Check out the ICA’s Advocacy Toolkit to learn how you can reach out to your Congressional leaders to tell your IC story and educate legislators about the importance of continued funding for IC research.

Look for updates about Dr. Planey’s research in future ICA Update and ICA eNews articles.

IC Awareness Spreads to Sunny Los Angeles
3/14/2013

More IC billboards are up and spreading IC awareness in sunny Los Angeles! We are in the process of releasing over 1,000 billboards across the nation, so keep checking back to find when and where the IC billboards nearest you are posted.

The Junior Billboard Association (JBA) was gracious enough to have their members donate available billboard spaces to the ICA for the Get the Facts IC awareness campaign. Therefore, space is limited and neither the ICA nor JBA have control over the billboard locations. No IC billboards in your area yet? Don’t worry! There are other ways in which you can help spread IC awareness:

We also encourage you to become a member of the ICA. Membership donations allow us to spread awareness even further, respond to advocacy issues as they arise, monitor and fund the ICA Pilot Research Program, as well as provide the support and hope the ICA strives to provide IC patients and caregivers. Your donations make a difference!

ICA Launches “Get the Facts” Awareness Campaign
3/7/2013

You may have heard about, or even seen, the IC billboards that are popping up across the country. Using a partnership with the Junior Billboard Association (JBA), and the help of ICA Board member, Tony Tyler, the ICA has released over 1,000 IC awareness billboards in 40+ different markets nationwide at a fraction of the cost. Thus far, billboards have gone up in Los Angeles, Denver, Louisville, and Detroit. ICA Board Co-chair, Barb Zarnikow, even spotted one this weekend in Cary, IL! Look for more billboards to appear in more cities within the next week.

These billboards are just the start of the ICA’s nationwide IC awareness campaign. In large part, this campaign is made possible because of the Center for Disease Control and Prevention (CDC) IC Education and Awareness Program. With support from the CDC, the ICA can continue to spread IC awareness to the general public, educate healthcare providers about IC, and empower patients with the tools they need to successfully live with IC. Look for many new IC programs in the coming weeks! Other activities, including ICA’s advocacy efforts, ICA Pilot Research Program, as well as the support and hope the ICA strives to provide patients and caregivers, can only be accomplished with your contributions.

To join us in our latest efforts, go to www.ichelp.org/GetTheFacts and click on the link “Spread the Knowledge” to find out what you can win for helping us spread IC awareness!

ICA in USA Today!
2/19/2013

More exciting news to announce! On Monday, February 18, 2013 the ICA was featured in USA TODAY's Charity Spotlight! We are located on page 2A in the News section. What can you do to help increase awareness? Check out the IC Awareness Toolkit!

View a copy of the full page on the ICA website.

Coming Soon to a Street Near You…
2/15/2013

Urgency… frequency… bladder pain… You know the symptoms of interstitial cystitis (IC), but unfortunately many men and women suffering with these symptoms do not. This is why the Interstitial Cystitis ICA BillboardAssociation (ICA) is in the process of launching IC awareness billboards across the nation! Spreading IC awareness means less men and women will go undiagnosed and untreated—suffering with IC symptoms alone.

So get your cameras ready! Over 1,000 of these billboards will be released in the beginning of March, and we want your photos of the IC billboards in your city or town! Stay tuned for more information regarding the locations of the billboard, release dates, and how you can help us spread IC awareness. Together, we can make a difference.

ICA Videos with the Experts—Now Available on iTunes!
2/14/2013

The Interstitial Cystitis Association (ICA) is pleased to announce that three exclusive new podcasts featuring experts in interstitial cystitis (IC) are now available in the ICA iTunes store! You may recall the launch of these videos on YouTube back in January. Now you can take these videos with you on-the-go by downloading them as podcasts on your mobile device. The podcasts feature interviews with Thomas Chelimsky, MD, Stanley J. Antolak, Jr., MD, and Barry Jarnagin, MD, all filmed at the 2012 IPPS annual meeting.

Be sure to share these podcasts on Facebook, Twitter, and Pinterest!

ICA to Testify at FDA Hearing on Opioids
2/6/2013

The role of opioid drugs in treating chronic pain conditions like interstitial cystitis (IC) has been an increasingly common subject of public discussion over the past few years. FDA and other policymakers have been trying to find a balance between decreasing opioid drug abuse and misuse, while allowing appropriate access to these pain-relieving drugs. For example, you may recall approval of the Risk Evaluation Management Strategy (REMS) in 2012 for extended-release (ER) and long-acting (LA) opioid analgesics as a recent example of the Agency’s ongoing commitment to ensuring that the benefits of these types of opioid drugs continue to outweigh their risks.

Moving past ER/LA opioid issues, FDA is now focusing on the proper use of opioid drugs in general. On February 7th and 8th in Bethesda, Maryland, FDA is holding a public hearing on the Impact of Approved Drug Labeling on Chronic Opioid Therapy to obtain information, particularly scientific evidence, on issues pertaining to the use of opioid drugs in the treatment of chronic pain. These issues include:

  • Diagnosis and understanding of patient pain
  • Understanding and adhering to the labels of pain-treating products
  • Limiting opioid prescriptions and use
  • Abuse and misuse of opioid medicines

At this meeting, the ICA will be testifying on behalf of IC patients everywhere. We will urge FDA to ensure that patients with chronic pain conditions like IC have access to these critical pain medications as the Agency moves forward with regulatory work on the serious issues of opioid addiction and misuse.

Cannot make it to the meeting in person? You can still let your voice be heard! Submit your comments or read other comments already submitted at regulations.gov.

ICA 2013 Forum Survey
1/25/2013

The Interstitial Cystitis Association (ICA) is in the planning stages of the next forum, a one-day event designed to help you learn more about the latest developments in IC research, treatments, and self-management strategies. We would like to get your feedback on the best location and time to hold the event. Please complete the survey below. Thank you for taking the time to help with this process!
Read More

Straight from the Source – New ICA Videos with the Experts!
1/18/2013

Hear it straight from the source! The Interstitial Cystitis Association (ICA) is pleased to announce three exclusive new videos featuring the following experts in interstitial cystitis (IC):

These videos can be viewed on the ICA YouTube page. Be sure to share these videos on Facebook, Twitter, and Pinterest!

What’s New in the New Year
1/10/2013

Have you tried complementary and alternative medicine (CAM)? In the recently published Interstitial Cystitis Association (ICA) CAM survey, 84% of interstitial cystitis (IC) patients said they had tried CAM to manage their IC. To help you learn more about the different CAM techniques for IC and associated conditions, the ICA has made updates to the CAM section of ichelp.org. Here, you can find the latest information on the use of guided imagery, meditation, prayer, and writing therapy for IC pain relief. Each of the new pages can be found under “Mind-Body Medicine.” Check it out and tell us what you think!
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The ICA is pleased to bring you these new resources on all things IC. Look for more updates in the coming weeks!

What Do You Think Caused Your IC?
1/10/2013

The exact cause of interstitial cystitis (IC) remains a mystery. What do you think is the cause of your IC?

Join the discussion on the potential causes of IC on the ICA’s Facebook, Twitter, and Pinterest communities!

Take the poll.

New ICA Executive Director: Lee Claassen, CAE
1/2/2013

We are pleased to announce that Lee Claassen, CAE, starts this month as the new Executive Director of the Interstitial Cystitis Association (ICA). Claassen has held a variety of leadership positions in health Lee Claassenand science-based organizations, as well as serving as a member of nonprofit association boards. Most recently, she served as Director for the Spinal Research Foundation, a patient advocacy organization.

“Lee has the ability, solid experience, enthusiasm and leadership skills to be successful in helping to continue to deliver the important mission of the ICA,” stated Barb Zarnikow, co-chair of the ICA Board. For nine years, as a staff member of the American Association for the Study of Liver Diseases, she was involved in health education, industry relations, and an association-run grant program.

Claassen has leadership experience overseeing a wide range of nonprofit association responsibilities, including member recruitment and retention, print and electronic media product development and strategic marketing, and fundraising and organizational development. “These skills are directly transferable and will help the ICA continue to execute its mission on behalf of the millions of people who have interstitial cystitis,” said Eric Zarnikow, co-chair of the ICA Board.

“I am excited and honored to be joining ICA as its next Executive Director,” shared Claassen. “I look forward to working with the Board, ICA staff, and the IC community to continue the ICA's tireless work in advocacy, research, and education. I welcome the opportunity to help improve the quality of life for those suffering with IC and to ensure the continued search for better IC treatments and ultimately a cure.”

During January, Claassen will work closely with outgoing Executive Director Barbara Gordon to transition into this new role.

Your Brain on Pain
12/18/2012

Through brain imaging and other cutting-edge neurobiological research, the mind-body connection and its link to the complex world of pain, are becoming more clearly understood. Learn more in the fall 2012 issue of the ICA Update.

Read about “The Brain on Pain."

The fall 2012 issue of the ICA Update has been mailed to ICA members! Not a member? It’s not too late to join.

Share the Gift of Hope. Buy an ICA Holiday Gift Set!
12/13/2012

Share the gift of hope this holiday season by purchasing an Interstitial Cystitis Association (ICA) Holiday Gift Set. Priced at 60% percent off their retail value, these sets cover important topics in interstitial cystitis (IC) including diet, family, treatments and travel. There is even a set that includes two years’ worth of the award-winning magazine, the ICA Update. This gift set is essential for the newly diagnosed patient, the waiting room of a healthcare provider’s office, or someone who wants to learn more about IC. When it comes to managing IC, knowledge is power. Help empower someone special with these gift sets.

Don’t forget about the other ICA gifts you can give year-round:

This season and year-round, these are the gifts that truly keep on giving!

Share Your IC Story
12/13/2012

Have a story of hope, encouragement, and success with interstitial cystitis? We want to hear it! Submit your story to the ICA's Voices of Hope Blog. Please email your story (500 words max) and personal photo to ICAmail@ichelp.org.

ICA CAM Survey—with Your Input—Published!
11/29/2012

Complementary and alternative medicine (CAM) offers new approaches to managing chronic pain conditions like interstitial cystitis (IC). However, there is a lack of published findings on the use of CAM for controlling IC symptoms, including pelvic pain with associated urinary frequency and urgency.
Read More

Keep Interstitial Cystitis Research Funded!
11/14/2012

With the threat of significant across-the-board cuts to health programs in the federal budget (sequestration), it is now more important than ever to urge Congress to protect funding for all medical research, including research for interstitial cystitis (IC).

Sequestration will result in massive cuts to the FDA, NIH, and CDC—federal agencies that fund and support IC research and awareness. It also includes policy changes that could hurt IC drug development in the private sector. The tremendous strides in IC advocacy we have made will be severely impacted if sequestration goes into effect this January.

Tell Congress to increase—not cut—funding for IC research and awareness programs. Also, share this message on Facebook and Twitter (hashtag: #saveresearch). Time is of the essence!

ICA Advocates for Patient Involvement at FDA
11/8/2012

On October 25, the US Food and Drug Administration (FDA) held a public meeting to kick off their Patient-Focused Drug Development Initiative, a component of the Prescription Drug User Fee Act reauthorization (PDUFA V).
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Protect IC Funding Today!
11/8/2012

Now that the election is over, this is the time to contact your representative and senators locally to educate them on the importance of interstitial cystitis (IC) research and awareness. Legislators are scheduled to be in their districts until November 13th.
Read More

Support the Cause While Shopping at Amazon this Holiday Season
11/8/2012

Make a purchase from Amazon and support the cause! Amazon donates a percentage of sales to the ICA if you click-through this special link to Amazon and then place your Amazon order.

New Ultrasound Device May Reduce Pain
11/2/2012

In last week’s eNews, the Interstitial Cystitis Association reported on the International Pelvic Pain Society’s 20th Annual Scientific Meeting. We have more news to share with you from this event!
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ICA @ IPPS 2012
10/25/2012

On October 18, 19, and 20, the Interstitial Cystitis Association attended the International Pelvic Pain Society’s 20th Annual Scientific Meeting. The meeting provided healthcare providers a detailed overview on the evaluation and management of chronic pelvic pain disorders.
Read More

Advocacy Efforts Yield IC Funding for Research
10/23/2012

We did it! Your advocacy efforts, ICA advocacy efforts resulted in a $1.6 million research award to fund a potential new bladder drug delivery system for anti-nerve growth factor (NGF) therapy for IC.
Read More

ICA Interviews Experts in Nutrition and PT
10/16/2012

The Interstitial Cystitis Association (ICA) is pleased to announce not one, but two exclusive new videos featuring experts in the fields of nutrition and physical therapy! These videos can be viewed the on the ICA’s YouTube page, as well as on the ICA’s iTunes page.

The first video features Barbara Shorter, EdD, RD, CDN, Associate Professor of Nutrition at Long Island University. Dr. Shorter recently presented her work on the shortened Shorter-Moldwin IC and Diet Questionnaire at the 2012 American Urological Association (AUA) Annual Meeting. At the meeting, Dr. Shorter gave the ICA an inside scoop on the questionnaire, including how it is expected to help healthcare providers create a personalized treatment plan for their interstitial cystitis (IC) patients.

We also nabbed an interview with Amy Stein, MPT, author of Heal Pelvic Pain, founder and practitioner of Beyond Basics Physical Therapy in New York City, at the International Society for the Study of Women’s Sexual Health (ISSWSH) Summer 2012 Meeting. Stein was among the specialists who taught at meeting. In the video, Stein gives us an overview on the anatomy of the pelvis, explains how physical therapy can help ease IC symptoms and answers frequently asked questions regarding physical therapy.

Be sure to share these videos on Facebook, Twitter and Pinterest!

ICA @ AUGS 2012
10/12/2012

The ICA attended the American Urogynecologic Society (AUGS) 33rd Annual Scientific Meeting in Chicago, Illinois. The meeting was designed to show the latest advancements, research, and technologies in urogynecology.
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A New and Improved Introductory Disability Kit
10/4/2012

For some, interstitial cystitis (IC) can be severe. It can affect general health, mental health, ability to work, and personal relationships. If these challenges prevent you from being gainfully employed, there may be a need for financial assistance.

If you or someone you know is in need of short-term, long-term or social security disability insurance, consider ordering the ICA’s Introductory Disability Kit—an important resource to have when applying for disability insurance. The updated kit is available in the ICA’s store for a new low price.

Everyone Can Make a Difference
10/2/2012

Have you ever wanted to donate to the ICA, but felt like what you had was not enough? Or maybe you have wanted to spread interstitial cystitis (IC) awareness, but did not think your voice was loud enough to be heard? Mary Clare, a middle school student whose mother has IC, did not let anything get in the way of her raising funds and awareness for IC. Her inspirational story can be found here.

We have been able to use the funds Mary Clare raised to help several IC patients struggling to renew their ICA memberships. There are several ways you can follow in Mary Clare’s footsteps and make a difference in the IC community:

Columbus Day
10/1/2012

The ICA will have a skeleton crew on Monday, October 8, 2012 in recognition of Columbus Day, so it may take longer to respond to calls and emails.

The ICA Spreads Awareness in USA Today!
9/26/2012

USA TodayLast week, the Interstitial Cystitis Association (ICA) had a two-page spread in the USA Today Chronic Pain supplement! The ICA partnered with Mediaplanet USA for their Chronic Pain campaign. The supplement included a story by Barb Zarnikow, ICA Co-chair of the Board of Directors, on her journey with interstitial cystitis (IC) pain. There is also an educational article on living with interstitial cystitis, and a plug for the ICA’s Newly Diagnosed Toolkit. Make sure you check out the Chronic Pain supplement (we are on pages 12 and 13), now available online.

The ICA continues to spread IC awareness to help others understand more about IC, what it is and the unique challenges to living with a painful chronic condition like IC. And you can too! If you live in one of the cities that ran the supplement in the USA TODAY (NY, Chicago, LA, and Philadelphia), take a photo with the ICA’s spread and Pin it and let us know or post it to the ICA’s Facebook community. We will “like” your photo. You can also check out the ICA’s IC Awareness Toolkit for more ideas.

Follow Us on Pinterest!
9/13/2012

For the past few years, you have shared your interstitial cystitis (IC) stories through the ICA’s Facebook community. The ICA is pleased to join yet another online social network—Pinterest. The ICA Pinterest community will be a “virtual scrapbook” where you can share your IC journey through images. This community provides an additional means of patient to patient support. It will also increase awareness of IC.

You can also follow the ICA on Twitter and YouTube!

Tips from “A Patient's Perspective”
9/13/2012

Patricia Cyr, author and IC patient, has recently written a book entitled A Patient's Perspective: Tips for Your Doctor Visits and More. The book gives advice on how to overcome the obstacles of living with a chronic illness. Whether it is making medical appointments, dealing with clerical errors, or applying for disability, Patricia Cyr covers it all. To buy this book and other books recommended by IC patients, check out the Interstitial Cystitis Reading List.

New Director for the Office of Research on Women's Health Announced
9/13/2012

National Institutes of Health Director Francis S. Collins, MD, PhD, recently appointed Janine Austin Clayton, MD, as Director for the Office of Research on Women's Health (ORWH) and Associate Director for Research on Women's Health, NIH. Dr. Clayton has been serving as ORWH Acting Director since the retirement of Vivian Pinn, MD, in August 2011. A board certified ophthalmologist, Dr. Clayton's research interests include autoimmune eye diseases, and the role of sex and gender in health and disease. Dr. Collins said, “I look forward to seeing ORWH's progress in promoting women's health and sex differences research at NIH advance even further under Janine's direction. She has a great legacy to build upon, and I have every confidence that she will succeed."

To learn more about the NIH's Office of Research on Women's Health, go to http://orwh.od.nih.gov/

Support Group Updates and Other News
9/1/2012

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NIH Workshop on Chronic Overlapping Pain Conditions
8/27/2012

On August 13th and 14th, the National Institute of Dental and Craniofacial Research (NIDCR) and the National Institute of Neurological Disorders and Stroke (NINDS), together with the NIH Pain Consortium, sponsored a workshop on chronic overlapping pain conditions. The workshop was co-chaired by Daniel Clauw, MD, from the University of Michigan and Elizabeth Unger, MD, PhD, from the Centers for Disease Control and Prevention.
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Coming Soon . . .
8/15/2012

The Summer 2012 issue of the ICA Update will soon be on its way to members.

In this issue:

  • Pain vs. Sleep vs. Pain: Break the Vicious Cycle
  • Time for Two
  • ICA News
  • Doctor’s Forum: Mind, Body, and Soul

Find out more about this issue.

Not a member? Join now, and your subscription to our information-packed magazine will start with this exciting issue.

NIH Multidisciplinary Pain Program
7/25/2012

The National Center for Complementary and Alternative Medicine (NCCAM) is launching a new research program focused on pain. Led by Catherine Bushnell, Ph.D., an internationally recognized pain and neuroscience researcher, this collaborative effort will bring together basic science and clinical research efforts to better understand and treat chronic pain disorders such as interstitial cystitis (IC).

The program will investigate the role of the brain in pain processing and control, and how factors such as emotion, attention, environment, and genetics affect pain perception. The program will also explore how chronic pain produces changes in the brain that can modify how the brain reacts to pain medications like opioids. This will be especially important since opioids are often used in the management of IC pain.

Want to ensure IC is one of the chronic pain disorders studied in this new research program? Let the Director of NCCAM, Josephine P. Briggs, M.D., know! First, thank Dr. Briggs for launching extremely valuable program. Second, tell her your IC story. Third, encourage her to make IC a priority for this new program.

FDA Aims to Reduce Abuse of Opioid Pain Relievers
7/12/2012

On Monday, July 9, the Food and Drug Administration (FDA) released new requirements for prescribing opioid prescription pain medicines. With the goal of reducing risks associated with misuse, addiction and overdose, the FDA released a “risk management plan” for a class of opioid medications used to treat moderate to severe chronic pain. The aim of the plan is to ensure health care professionals are trained on how to properly prescribe these medicines and how to instruct their patients about using them safely. More at: www.fda.gov/ForConsumers/ConsumerUpdates/ucm307821.htm.

Radio News Flash—Yes, They Did Say IC
7/12/2012

Kudos to Patty Cyr and her husband for raising awareness about IC last week among listeners of WWUH, 91.3FM (West Hartford, CT)! In case you missed it, check out www.wwuh.org to hear the broadcast of the ICA public service announcement.

Advocacy Fireworks and Parades
6/29/2012

Read about the Supreme Court Health Reform Ruling and Food and Drug Administration Safety and Innovation Act…
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Happy Fourth of July!
6/29/2012

The ICA is closed Wednesday, July 4th in celebration of Independence Day. As usual, we are find 24/7 help and support through the ICA social networking community.
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Barbara Gordon, RD Leaving ICA This Summer
6/25/2012

Note from Eric & Barb Zarnikow, ICA Co-Chairs:
We are writing to let all of you know that Barbara Gordon will be leaving her role as Executive Director of the ICA later this summer.
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IC Advocates in Action
6/18/2012

Check out this week's ICA eNews.
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ICA Office Closed for Memorial Day
5/25/2012

The ICA office will be closed Monday, May 28 in honor of Memorial Day.

Find 24/7 help and support through the ICA social networking community.

ICA Daily Reports from 2012 AUA Meeting
5/21/2012

ICA @ AUA - Check back for daily reports from the 2012 meeting!
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ICHelp Celebrates National Women's Health Week
5/8/2012

Why would a woman with IC want to celebrate National Women’s Health Week? Well, 3 to 8 million women in the United States may have IC. Women are often the caregivers for their loved ones, putting the needs of their spouses, partners, children, and parents before their own.
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Email Woes
5/8/2012

In shifting the ICA email to a new system, we experienced a few hiccups. Our apologies if you sent an email and did not receive the usual quick response from the ICA. If it has been a couple of days or more that you have been waiting for a response to your email, please resend it to ICAmail@ichelp.org. Hopefully, we’ve got the issue resolved and your note will not get catapulted into cyberspace this time! Thanks again for your patience as we work through this technical technicality.

ARHQ Chronic Pelvic Pain Therapies for Women
5/8/2012

The US Department of Health and Human Services (HHS) Agency for Healthcare Research and Quality (AHRQ) recently released a plain-language patient publication and clinician summary that compares treatments for patients diagnosed with noncyclic chronic pelvic pain (CPP). Interstitial cystitis is highlighted in the list of chronic pelvic pain conditions. These products summarize evidence on the effectiveness, benefits and harms of surgical and nonsurgical treatments for women. This review found there is evidence lacking to support a surgical approach for treating CPP. These materials and many others are available on AHRQ's Effective Health Care Program Web site, www.effectivehealthcare.ahrq.gov/options.

ICA Update Recognized with EXCEL Award by the Association Media & Publishing
4/17/2012

A Silver EXCEL was awarded to “Running Ahead of Research on Medical Marijuana,” one of the feature articles in the fall 2011 issue of the ICA Update.
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Lyme and IC?
4/10/2012

The Dr. Melanie Show
April 12 at 1pm EST

Patients and a nurse practitioner will discuss this anecdoctal link and encourage listeners to ban together to push those research dollars to look deeper into such connections.

So You Have IC, Now What?
4/10/2012

Check out the ICA's Newly Diagnosed Toolkit.

And let us know if you catch the ICA Facebook Ads about the toolkit.

Pain in America: Exploring Challenges to Relief
2/22/2012

Recently, the Senate Health, Education, Labor, and Pensions (HELP) Committee met to discuss the Institute of Medicine (IOM) report, “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research.”

US Senate Working on Drug Shortage Problems
2/9/2012

Drug shortages are becoming an ongoing problem for many patients and health care providers. Two primary reasons include an increased demand for certain drugs and wider scope of use for many medications. Recognizing the difficulty that drug shortages pose for patients with chronic conditions like interstitial cystitis, the US Senate passed the Preserving Access to Life-Saving Medications Act which requires that pharmaceutical companies inform consumers and doctors sooner regarding probable shortages. This bill requires the FDA to not just notify the public about shortages, but also to inform all of us about potential shortages. It also directs the FDA to provide regular updates to the public about shortages and work with manufacturers to develop strategies to address production problems.

This bill will help ensure that people with IC and other patients have access to the medications they need when they need them most. The bill has been referred to the House for review and consideration. The ICA is tracking this bill and will keep you informed as this legislation moves forward. Follow us on Twitter, handle ICHelp—we regularly tweet notifications about shortages.

Check Your Pain Pills!
1/18/2012

FDA has put out an alert to healthcare professionals and patients to inspect their opioid pain medications carefully. A packaging problem with Endo Pharmaceuticals products at a Novartis Consumer Health manufacturing site may have caused certain opiate painkillers to be packaged with other products. That may mean a stray pill of one medicine might end up in the bottle of another.

Patients should not be unduly alarmed, said FDA, because the chance that the wrong pills are being dispensed to patients is low. But just to be safe, take a look at your pills and check with your pharmacist if you have any doubts about getting the right medication. FDA is actively working with Novartis and Endo to address the manufacturing problems.

Here are the products that may be affected by the problem (see also www.endo.com):

  • Opana® ER (oxymorphone hydrochloride) Extended-Release Tablets CII
  • Opana® (oxymorphone hydrochloride) CII
  • Oxymorphone hydrochloride Tablets CII
  • PERCOCET® (oxycodone hydrochloride and acetaminophen USP) Tablets CII
  • PERCODAN® (oxycodone hydrochloride and aspirin, USP) Tablets CII
  • ENDOCET® (oxycodone hydrochloride and acetaminophen USP) Tablets CII
  • ENDODAN® (oxycodone hydrochloride and aspirin, USP) Tablets CII
  • MORPHINE SULFATE Extended-Release Tablets CII
  • ZYDONE® (hydrocodone bitartrate/acetaminophen tablets, USP) CIII

In the coming weeks there may be periods of shortages for these products.

For more information, go to http://www.fda.gov/Drugs/DrugSafety/ucm286226.htm

New IC Treatments—Winter 2012 ICA Update
1/18/2012

The Winter 2012 issue of the ICA Update will soon be on its way to members.

Find out more about this issue.

Dr. Melanie Radio Program - Women's Health Research
1/18/2012

Tune in for an interesting segment highlighting two women working to make the world a better place.
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Happy New Year from everyone at the Interstitial Cystitis Association!
1/12/2012

Thanks to everyone for their year-end gifts. Your generosity will help us to continue to be your voice as we advocate for research and raise awareness and to serve as the central information hub for the millions of people with IC and their families, the healthcare providers who care for them, and the researchers working to find better treatments and a cure.

Our work on your behalf continues in 2012 from a new location. We've moved to shared office space across the river. Here's our new address and phone and fax numbers:

Interstitial Cystitis Association
1760 Old Meadow Road, Suite 500
McLean, VA 22102
www.ichelp.org

Email: ICAmail@ichelp.org

ICA Skeleton Crew…ichelp Open 24/7
12/22/2011

The ICA will have a skeleton crew between December 23, 2011 and January 3, 2012. We will be open again on Tuesday morning. However, we’re open 24/7 online at

See you in cyberspace!

Therapeutic Discovery Project
12/22/2011

On December 14, 2011, the ICA joined forty three patient and health advocacy groups in sending a letter to the chairmen and ranking members of the Senate Committee on Finance and the House Committee . . .
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Newly Updated ICA Resources
12/15/2011

The ICA recently released updated versions of four of our signature brochures, along with a new and improved version of the ICA Restroom Access Card. Check out the new items in the ICA store:

  • Sex and IC—Like other chronic illnesses, IC can have a disruptive effect on sexuality and relationships. Learn more about IC and sexuality.
  • IC and Vulvodynia—Many IC patients struggle with vulvar pain. Learn more about treatment and coping strategies.
  • Real Men Get IC—the latest research known about men with IC, including treatment options
  • About Interstitial Cystitis—A great overview for the newly diagnosed patient.
  • ICA Restroom Access Card—Plastic wallet card describing IC, designed to assist you in obtaining use of toilet facilities in public places. The language on the card was reviewed and updated by a volunteer lawyer with IC to ensure it provides the needed medical alert language!

Members receive 50% discount on all ICA store items—and, this significant savings applies to both single and bulk shipments.

The Importance of Research for IC Patients
12/7/2011

Research is essential to find effective treatments for IC and other related conditions. It is a process to design a proposal, submit it, present it, get it approved, and then be able to find subjects willing to participate. Listen to Dr. Melanie's radio show to learn about the process and how you can volunteer to be part of a study.
Learn More.

Dr. Melanie—Relieving Pelvic Pain/ IC with Aloe
11/22/2011

Enthusiastic about about aloe vera, Dr. Melanie interviewed Pat Criscito, president and CEO of Desert Harvest and chemist Bart Bellamy, president of Ceba-Tek, Inc, which manufactures Desert Harvest products. According to the company, aloe vera benefits the body in four unique ways. It has the ability to reach the deepest body tissues, some seven layers deep, unlike most lotions, liquid substances, and water, which will penetrate only two layers of skin. Aloe has six antiseptic agents—lupeol, salicylic acid, urea nitrogen, cinnamic acid, phenol, and sulfur—which kill bacteria, viruses, and fungus. It also stimulates birth of new, healthy tissue up to six to eight times the normal rate. What's more, aloe detoxifies and normalizes your metabolism. Listen on ICA iTunes.

Advocacy @ NIH—Laura Santurri
11/22/2011

This past week, IC Patient Advocate Laura Santurri joined ICA Executive Director Barbara Gordon at the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK) meeting on Measurement of Urinary Symptoms.
Read More

NEW—Let’s Pull Together “Imagine No IC” Fundraising Toolkit
11/10/2011

We are honored to be contacted so often by passionate members of the IC community asking about helping to raise funds for interstitial cystitis awareness and research. ICA staff collected notes from these conversations and with the help of some generous volunteers created the “Imagine No IC—Let’s Pull Together” Fundraising Toolkit. Version 1.0 of the toolkit was recently launched.

The toolkit has lots of ideas on how to help raise funds for the cause. It also provides a roadmap for planning your fundraising event or drive. Have fun putting your artistic, musical, athletic, cooking, or other talents to work, and rally your coworkers and community for the cause! Current community fundraising initiatives are highlighted in the “Active Fundraisers” section of the toolkit.

Please join us in thanking the toolkit’s development team including IC patients Barbara Zarnikow, Claudia King, Lauren Snyder and Debra Kerr; ICA staff Deborah Lovin, Barbara Gordon, Nicki Mehall; and designer Michael Satina. Take a look and let us know what you think. Thanks again to everyone for helping to raise funds for the cause and the ICA!

Dr. Melanie on Healing Painful Sex
11/9/2011

It is estimated one in every five or six women have sexual pain. It is hard to talk about, even with a physician. Many women do not tell anyone. Gynecologists are often not experienced in treating sexual pain and are often uncomfortable talking about it. Sexual pain is real and is almost always caused by an identifiable, verifiable medical condition, and in the vast majority, it can be treated effectively.

Listen to learn how Dr. Deborah Coady and Nancy Fish, MSW, MPH, answer your questions in the new book Healing Painful Sex: A Woman’s Guide to Confronting, Diagnosing, and Treating Sexual Pain.

Medical Marijuana, Gluten-free Diets
10/13/2011

The fall 2011 issue of the ICA Update is at the printer and will soon be delivered to ICA members and magazine subscribers. This award-winning, quarterly magazine with in-depth stories about IC research, treatment, and lifestyle issues, is mailed to donors who make an annual gift of $45 or more.

And, yes, we said award-winning! Most recently, two articles and a special issue of the ICA Update won 2011 National Health Information Awards:

Let the Potty Start
10/13/2011

Check out “A Girl’s Guide to Plumbing” in the November 2011 issue of the Ladies Home Journal (LHJ). Last August, the ICA reached out to the health editor of this national women’s magazine and encouraged coverage about IC in an upcoming issue. LHJ agreed. For their more than 2.5 million women readers, LHJ highlights bladder problems, such as urinary tract infections, incontinence, and interstitial cystitis, which women suffer from more often than men. Thanks to LHJ for helping to get the word out to their readers about IC through this creative and clever feature story.

PROSED DS Manufacturing Glitch
10/13/2011

Ferring Pharmaceuticals reports that a temporary manufacturing issue has halted production of PROSED DS. At this time, Ferring told the ICA that they recommend IC patients discuss with their healthcare providers alternatives to PROSED DS. Here’s a list of non-opioid medicines that may help reduce pain, burning, urgency, frequency, and bladder spasms. If you currently take PROSED DS, print this list and bring it with you to your next doctor’s appointment. Ask if any of these medicines are an alternative for PROSED DS for you.

Meeting on Measurement of Urinary Symptoms (MOMUS) at NIH
10/6/2011

The National Institute of Diabetes and Digestive and Kidney Disease (NIDDK) is hosting a public meeting on Measurement of Urinary Symptoms. NIDDK invites urologists, patients, other clinicians, researchers, industry, advocacy groups, and other government agencies to join them on November 14-15, 2011, at the National Institutes of Health, Natcher Building.

The agenda focuses on the development of a better tool for evaluating urinary symptoms common to both in men and women. Organizers hope to generate effective tools which both help measure differences in symptoms across subgroups of patients (phenotyping) and early, late, transient, and persistent urinary tract symptoms.

We are pleased to report that IC patient Laura Santurri, MPH, CPH, has agreed to serve on a patient panel and share her experience to help researchers and clinical scientists understand the challenges of living with IC symptoms.

Register at www2.niddk.nih.gov/News/Calendar/MOMUS2011.htm.

Recall on PROSED/DS TB ATROPINE Free 100
9/23/2011

The ICA spoke to Ferring Pharmaceuticals today about the recall of PROSED/DS TB ATROPINE Free 100.

The following lots have been recalled from pharmacies:
101329
102285

Because pharmacies usually re-label the bottles without lot numbers, if you have any questions about your Prosed DS, please call your pharmacy so they can tell you whether or not your prescription is affected.

Both lot numbers represent virtually all of the Prosed DS that has been shipped to pharmacies recently. Doctors may have some samples available from a different lot number. If your Prosed DS has been recalled or you cannot fill your prescription, please contact your physician for a possible substitute medication.

Ferring Pharmaceuticals is not able to say at this time when Prosed DS will be available again, but they are working on the problem, which was the potency of one of the ingredients, hyoscyamine sulfate, through the established shelf life.

New on ICA iTunes
9/15/2011

IC Can Hurt: Emotionally and Sexually

Download Dr. Melanie Barton’s Voice of American radio show exploring how IC affects so many areas and people in the patient’s life. Loved ones suffer not knowing how to help. Children of IC/pelvic pain patients grow up missing the normal activities that other families take for granted. Sports events, traveling, or shopping all require more energy and bathroom stops for the patient than the family can tolerate. The family learns to go without the person or to just all stay home. Intimacy between partners becomes strained or non-existent due to painful sex.

Tony Tyler new ICA Board member will tell us what it is like to have a dad with IC. Amy Stein, MPT, author of Heal Pelvic Pain will tell us how sexual pain can be lessened or alleviated through physical therapy.

Are You a Federal Employee?
9/15/2011

Please Make Your CFC Pledge to Support the ICA (CFC #10578)

We are honored to be included the Combined Federal Campaign, a collective effort of federal employees to give back to the community through financial pledges to charities of their choice.

Federal employees can support the Foundation Center through the campaign from September 1-December 31, 2011. Your gifts help us to fuel vital programs and services such as this free eNews letter.

NY Medicaid Changes in Pain Med Formularies
9/15/2011

The New York State Medicaid program recently posted changes to pain medicines include in the formulary of approved medicines. Thanks to our friends at the US Pain Foundation for sending this item to us for dissemination. Here’s a list of some of the noted changes by Medicaid plan. However, at this time, not all plans are posted on the NY Department of Health website. As of October 1, many NY patients with pain will be required to switch to medicines that are listed in the approved formulary for their health plan.

IC, PT, and TT
9/6/2011

This week's line up for the Dr. Melanie VOA radio show includes two IC speakers:

  • PT Amy Stein with more of her pearls on physical therapy for pelvic pain.
  • Tony Tyler, ICA Board member, who shares his father's story and his passion for the cause.

Join us Thursday, September 8, 2011 at 1PM eastern at www.voiceamerica.com/show/1929/the-dr-melanie-show.

ICA Closed Labor Day…ichelp Open 24/7
8/30/2011

The ICA will be closed in observance of Labor Day on Monday, September 5th. We will be open again on Tuesday morning. However, we’re open 24/7 online at

See you in cyberspace!

FDA Approves Botox for UI
8/25/2011

Yesterday, the FDA approved Botox injection to treat urinary incontinence (UI) in people with neurologic bladder conditions such as spinal cord injury and multiple sclerosis who have over activity of the bladder. The effectiveness of Botox to treat this type of incontinence was demonstrated in two clinical studies involving 691 patients. Both studies showed statistically significant decreases in the weekly frequency of incontinence episodes in the Botox group compared with placebo.

Injection of the bladder with Botox is performed using cystoscopy, a procedure that allows a doctor to visualize the interior of the bladder. Cystoscopy may require general anesthesia. The duration of the effect of Botox on urinary incontinence in patients with bladder overactivity associated with a neurologic condition is about nine months.

In addition to its use to improve the appearance of facial frown lines, Botox also is FDA-approved to treat chronic migraine headaches, certain kinds of muscle stiffness and contraction, severe underarm sweating, abnormal twitch of the eyelid and a condition in which the eyes are not properly aligned. While not a FDA-approved for the treatment of interstitial cystitis, the use of Botox to treat IC is becoming more common. Will IC soon be added to this list of FDA-approved indications? Stay tuned.

IC Patient Nominated for an Emmy!
8/18/2011

Living with interstitial cystitis (IC) poses challenges that others can’t begin to understand. That’s why we wanted to share with you the stories of four more IC heroes and their incredible accomplishments as actors, advocates, artists, and authors.

    • Actor Paul McCrane—Nominated for an Emmy as Outstanding Guest Actor in A Drama Series 2011! Paul was one of the patients who shared his story with Congressional leaders during a past ICA Capitol Hill walk. There’s more about this in the ICA 2007 Annual Report.
    • Advocate Linda Salin—Celebrates 22 years of being one of the “IC angels” who respond to the emails and calls the ICA receives from patients, family members, healthcare providers, researchers, and the general public. Cristina S. speaks for all of us when she says,

      “Speaking to you gave me hope and helped me realize that there are different treatment options for my illness. Your encouragement also empowered me to finally take the stance that I am not going to live the rest of my life in pain.”

    • Artist Trisha HoekwaterThe national art competition, Artprize, starts September 21 and Trisha has created the worlds largest working slide puzzle which will be on display in downtown Grand Rapids, Michigan from September 21 to October 9.
    • Author Ed Lopatin—Great job Ed! You did a terrific job on the Dr. Melanie Voice of America radio show last week! Ed discussed his new book—Manage Your Chronic Illness, Your Life Depends on It. Listen to the archived show, which also includes an interview with urologist David Burks, MD. Our thanks to David for taking the time to share information about the new AUA IC Clinical Guideline.

Support IC research—make a donation to the Imagine NO IC Pilot Research Program.

Probiotic May Bust IC Pain
8/2/2011

Don’t miss the Summer 2011 issue of the ICA Update

Read our interview with David Klumpp, PhD, whose research points to a probiotic that might ease IC pain. At the last American Urological Association annual meeting, the findings were called a potential breakthrough.

IC researchers had more fresh ideas they presented at that meeting, which you can read in our coverage.

It’s been a long time since we learned something new about pregnancy in IC patients, and the survey many of you participated in did just that. The results and what they mean for you are detailed in our report on the survey.

If you’re a woman with IC past your childbearing days and facing another challenge—menopause—the ICA Update article on menopause options should help you make the best decisions for you and your IC.

Dr. Melanie Barton—VOA Airways and Care Ways
7/21/2011

Don’t miss Dr. Melanie’s radio show on August 11, 2011. Learn about the AUA Guidelines from urologist David Burks, MD who served on the committee that developed them. She’ll also be interviewing interstitial cystitis (IC) patient Ed Lopatin. Ed will be sharing his experience with IC and discussing his upcoming book—Manage Your Chronic Illness, Your Life Depends on It. Coming soon to book stores, this new resource has 100—yes, 100—recommendations for managing your health care, getting the most out of your physician visits, tips on hospital stays, help for caregivers, and more!

Elmiron Shortage is Over!
7/11/2011

Here's the note from Ortho:

      Janssen Pharmaceuticals, Inc., would like to provide you with a product availability update for ELMIRON® (pentosan polysulfate sodium) 100-mg capsules. We have now resumed shipments of ELMIRON® to distributors and pharmacies.

      For a limited time, prior participants are eligible for the EarlyAssist™ co-pay support program. Patients may pay no more than $5 per month for up to 4 months. Visit www.orthoelmiron.com to register.

      If you are currently taking ELMIRON®, you should check with local pharmacies and plan treatment accordingly with your healthcare professional.

      The priority is to reestablish supply as quickly as possible.

Institute of Medicine Report on Relieving Pain
7/7/2011

The Institute on Medicine (IOM), a nonprofit policy organization, released a comprehensive report on the impact of chronic pain on 116 million American adults, entitled Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. ICA Medical Advisory Board member, Ursula Wessleman, MD, served on the expert committee that compiled the report. ICA Executive Director Barbara Gordon, RD, provided public comments to the IOM as well as response to specific inquiries posed by the committee about the impact of IC.

This report highlights the need to focus on ensuring better care for people living with daily pain such as IC patients. It also highlights the need for more medical education about the special needs of chronic pain sufferers. Unfortunately, the results of the landmark RICE epidemiology study were not incorporated. The IC prevalence numbers used in the report are well below the 4 to 12 million we now know to be true. Why? The authors were required to draw from the results of published findings and the RICE study had not yet been published.

The report is available for free download—the functionality of the IOM website is a bit tricky your persistence is awarded with great information about the need to do more for chronic pain patients. Download the IOM Report on Pain Care, Education and Research.

ICA Welcomes Two New Board Members
7/7/2011

The ICA welcomes two new members on the organizational Board or Directors:

    • Tony Tyler was born and raised in Oklahoma. After earning a bachelor’s degree in history, Tony began his career at Tyler Media—a media company consisting of five radio stations, three TV stations, and an outdoor advertising company. The Tyler family has been in the media business for nearly 50 years. Tony works alongside his brother Ty and his father Ralph, who has IC. He is active in community service and married to his high school sweetheart, Shelley. They have four children and live in Norman, OK.

    • Irma Rodriguez, a patient and longtime supporter of the ICA. After a 25-year career in higher education, she has transitioned to a focus on furthering diversity in government and industry. Irma has also been a leader in professional, community, and national organizations dedicated to these issues and has been honored as a Kellogg Foundation Fellow and a Hispanic Leadership Fellow. A resident of Georgia, she is currently the manager of Diversity and Workplace Fairness with The Coca-Cola Company’s Corporate Global Office of Diversity and Workplace Fairness.

ICA Provides Oral Testimony to Congress
6/27/2011

Mid-morning on June 22, in a Senate office building in Washington, DC, the voice of IC patients was heard by members of the Senate Defense Appropriations Subcommittee: 

“Chairman Inouye, Ranking Member Cochran, and distinguished members of the Defense Subcommittee, thank you for the opportunity to present testimony today on interstitial cystitis commonly known as IC. I am Barbara Zarnikow from Buffalo Grove, IL. I am an IC patient and co-chair of the Interstitial Cystitis Association, a non-profit organization which provides advocacy, research funding, and education for patients living with IC.”

Joining forces with other health advocates on Capitol Hill, Barb educated Senators about how IC impacts military men and women and their families, thus explaining why IC should be included in the peer reviewed medical research program. Barb shared the findings of a study conducted between 1999 and 2002 which found that approximately 1.4% of veterans served by the Veterans Health Administration (VHA) were being treated for IC. The study also showed a 14% increase in patients being treated for IC in VHA during this same period. This echoes findings of prevalence among the general population which shows the incidence is much higher than previously thought.

IC research is currently funded as part of the Department of Defense Peer-Reviewed Medical Research Program. On behalf of IC patients, including the many veterans affected by IC, Barb requested that IC continue to be eligible for the Peer-Reviewed Medical Research Program for fiscal year 2012.

IC Advocate Martha Hart Dies at Age 93
6/27/2011

Martha Isabelle Hart, a former Michigan State Coordinator for the Interstitial Cystitis Association and much-loved “hugging grandmother” passed away on June 16, 2011. Martha’s efforts to help IC patients and their families across the state were appreciated by so many. We are grateful for her dedicated service. Our hearts go out to her friends and family including her four sons, five daughters-in-law, 19 grandchildren and six great-grandchildren. Her caring outreach and desire to dedicate her time and energy to the IC Association was a tremendous gift.

The family has asked that memorials be made in honor of her memory to the Interstitial Cystitis Association. Please make your memorial gifts may be made online at www.ichelp.org/memorialgift.

Now in Print: Higher IC Prevalence Statistics
6/17/2011

In April 2009, the ICA reported that 3 to 6 percent of American women—3 to 8 million of them—have IC symptoms. That new prevalence estimate presented by the RAND IC Epidemiology (RICE) research team was the biggest IC story at 2009’s annual meeting of the American Urological Association (AUA).

This month’s Journal of Urology® includes an article detailing these and other findings of the RAND study which surveyed 150,000 US households and found that IC is likely much more common than most experts thought.

Though this may seem like old news, this is really big news! Having the higher IC prevalence statistics published in a peer-reviewed journal, such as The Journal of Urology, gives the findings a stamp of approval which communicates to researchers, clinicians, and others that these results are significant. Study conclusions also provide new insights into the continued challenge for IC patients to get a diagnosis and need for continued medical education about IC and diagnosis. Read a summary of the study.

Midnight Madness? You are Not Alone.
6/3/2011