ICA Educational Activities

The Interstitial Cystitis Association (ICA) hosts patient forums, presents original research at scientific meetings, educates healthcare providers at medical conferences, organizes advocacy activities and walks on Washington, and more! Learn about upcoming interstitial cystitis (IC) events hosted by the ICA and other organizations.

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National Institute of Neurological Disorders & Stroke

On September 23 and 24, ICA staff attended the National Institute of Neurological Disorders & Stroke (NINDS) Nonprofit Forum at the National Institutes of Health. The meeting brought together many non-profit patient advocacy organizations. While the topics of discussion varied, the speakers all left the attendees with the same message – that the non-profits have access to and backing of the patients, and therefore have the most power. Personalizing a disease creates enormous power toward connecting with others. The group emphasized the power and importance of patient stories in bringing attention and awareness to one’s cause. If you have a story you’d like to share, or would like to read the IC stories of others, check out our Voices of Hope blog.

NIH Pathways to Prevention Workshop

On September 29 and 30, ICA staff attended the NIH Office of Disease Prevention Pathways to Prevention Workshop: The Role of Opioids in the Treatment of Chronic Pain. During the day-and-a-half workshop, panelists and presenters discussed the body of evidence, and attendees had opportunities to comment during open discussions. Among the presenters and panelists was ICA Medical Advisory Board member, Dr. Daniel Clauw. The Workshop sought to clarify:

  • Long-term effectiveness of opioids for treating chronic pain.
  • Potential risks of opioid treatment in various patient populations.
  • Effects of different opioid management strategies on outcomes related to addiction, abuse, misuse, pain, and quality of life.
  • Effectiveness of risk mitigation strategies for opioid treatment.
  • Future research needs and priorities to improve the treatment of pain with opioids.

Notable research presented at the workshop included the finding that long-term efficacy of opioids versus harm is not clear, but patient advocacy groups can be helpful in determining long-term effects of opioid use because of their access to patients. Another interesting study found that females derive greater painkilling from morphine than males in clinical and controlled lab studies. In addition, evidence of the direct impact of Naloxone on preventing overdose death was presented. Naloxone is a drug that is easy to administer and has already saved thousands of lives. Lastly, the experts closed by stating that when used appropriately, opioids have numerous clear benefits. Balancing therapeutic values versus risks is necessary and complicated, and coordinated national and local responses are necessary.

For those unable to attend, the draft report from the workshop, prepared by an unbiased, independent panel, is now available online here. Comments will be accepted through Friday, October 17, 2014 and can be submitted here. The draft report summarizes the workshop and identifies future research priorities.

Alliance for Pelvic Pain 2014 Retreat

Due to popular demand... the Alliance for Pelvic Pain Retreat is back! The weekend retreat for women and men with chronic pelvic pain will be held on May 31-June 1, 2014 at the KIMA Center for Physiotherapy & Wellness in New York, NY. Dr. Robert Echenberg, Dr. Deborah Coady, pelvic floor physical therapist, Amy Stein, and counselors, Nancy Fish and Alexandra Milspaw will bring together their years of experience to create a comprehensive overview of what you need to know and where you need to go to get the help you need. This weekend will provide a solid foundation of knowledge, skills, and comprehensive treatment modalities that will help you get back on track towards managing and healing your chronic pelvic pain. To learn more information about the event, click here. Also, be sure to read ICA’s review of the Alliance for Pelvic Pain 2013 Retreat.

Special Early Sign Up Bonus

Sign up by May 1st and receive a special early sign up bonus valued at $75 (a special gift package of 3 pelvic pain books: Heal Pelvic Pain, Healing Painful Sex and Secret Suffering, and a mindfulness meditation CD). And if someone gets a friend to register by May 1st, you will each receive Amy Stein's new video: Healing Pelvic and Abdominal Pain, valued at $49.95. For more info, check out: www.allianceforpelvicpain.com.

For Grace Annual Women In Pain Conference

On September 13th at 9am PST, coping, forgiveness and chronic pain will be explored at For Grace's 6th Annual Women In Pain Conference - "Getting Real: Transforming Hidden Truths Into Positive Action." For those who can't join in person, a FREE, live worldwide webcast will be available - no registration needed! For more details, go to www.forgrace.org.

AUGS 34th Annual Scientific Meeting

Description: The American Urogynecologic Society (AUGS) Annual Scientific Meeting is where the “best of the best” science in female pelvic medicine and reconstructive surgery is presented. This meeting is intended for physicians, nurses, physical therapists, students, researchers, educators and health care professionals. New treatment and developments in both surgical and non-surgical settings are shared through a variety of educational formats, including oral, poster, video, and tips and tricks, which encourages discussion and idea sharing. ICA representatives will be in attendance to capture the latest news related to IC, and to educate healthcare providers on all things IC. ICA will release its newest continuing medical education (CME) program, IChelpCME.org, developed in partnership with AUGS and in cooperation with The France Foundation and the Nurse Practitioner Alternatives, and designed to educate healthcare providers on the identification and management strategies for IC.

Date: October 16 – 19, 2013
Location: Caesar’s Palace, Las Vegas, Nevada
Contact: Go to www.augsmeeting.org for more details.

International Pelvic Pain Society (IPPS) 20th Annual Scientific Meeting

Description: The International Pelvic Pain Society (IPPS) 20th Annual Scientific Meeting provides healthcare providers with a detailed overview on the evaluation and management of chronic pelvic pain disorders. Topics that will be covered at the meeting include IC, postsurgical pain, abdominal pain, pelvic musculoskeletal health, endometriosis surgical management, trending topics from experts, vulvar disease management, bladder pain syndromes, and more. ICA representatives will be in attendance to capture the latest news related to IC, and to educate healthcare providers on all things IC.

Date: October 17-19, 2013
Location: The Peabody Hotel, Orlando, FL
Contact: Go to www.pelvicpain.org/meetings for more details.

NIH Pain Consortium Symposium

The 8th Annual NIH Pain Consortium Symposium on Advances in Pain Research will take place on May 29th and 30th. This year’s theme will be integrated self-management strategies for chronic pain.

Location: National Institutes of Health, Natcher Auditorium and Atrium, Building 45, Bethesda, MD. The symposium will also be available via videocast and archived at www.videocast.nih.gov.

Cost: There is no charge to attend the symposium. It is open to the public.

Register: Please go to the registration page to attend the symposium. Advance registration may facilitate entry onto the campus. Registration will also be available on site.

For Further Information contact: Linda Porter porterl@ninds.nih.gov or Cheryse Sankar sankarca@ninds.nih.gov.

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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Helping IC Patients Make Confident Dietary Choices

Are you prepared to help the 11 million patients living with interstitial cystitis in the United States determine their trigger foods? In 2011, the American Urological Association recommended dietary modification as one of the first line treatments for the puzzling and painful bladder disorder, "interstitial cystitis," suggesting that patients partner with registered dietitians to help them determine their personal trigger foods. In fact, over 92% of IC patients say that various food and beverages can increase their symptoms and over 84% of patients surveyed said that modifying their diet improves their quality of life. This makes dietary intervention the most successful treatment available for interstitial cystitis. Dietitians can play a key role in helping IC patients control their symptoms by teaching patients various dietary and lifestyle modification techniques.

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Dr. Melanie Interviews Two Experts in Chronic Pelvic Pain

The Dr. Melanie Show radio program on the VoiceAmerica Variety Channel will interview Robert Echenberg, MD, FACOG and Amy Stein, MPT, experts in IC and other chronic pelvic pain conditions. The show airs Thursday, November 29 at 1 pm EST.

Free Patient Awareness Seminar

Unsatisfactory or painful sex and bladder control problems are subjects most people are reluctant to talk about, even with their doctors. Yet having that discussion can help you find a solution. On Friday, March 9, 2012, Oklahoma State Urological Association’s panel of internationally known experts will empower you and your physician take an active role in your health care. Patients, doctors and medical staff are all encouraged to attend!
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Dr. Melanie Radio Program - Women's Health Research

Society of Women’s Health Research CEO and ICA Board member, Phyllis Greenberger, talks with Dr. Melanie about the differences in men and women’s health issues and what research is exploring them. Rhonda Garrett, ICA Information Specialist and past Board of Director, missed part of her children’s formative years because of her IC pain. However, her IC is now in check and her story is one of hope. Tune in for an interesting segment highlighting two women working to make the world a better place.

The Importance of Research for IC Patients

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 on Healing Painful Sex

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.

Dr. Joshi on Pain Management

Many people live with chronic pain. All too often, if observers cannot see something, they do not believe it exists. People, often including the physicians treating the patient, accuse the ill person of fabricating the pain or exaggerating it to seek drugs. Dr. Melanie will interview Dr. Joshi about his approach to pain management and how he helps IC patients, as well as those with overlapping conditions such as fibromyalgia and headaches.

Physical Therapy Help for Pelvic Pain

Listen to Amy Stein, MPT author of Heal Pelvic Pain share how people who have interstitial cystitis (IC) or pelvic pain may be able to heal without surgery.

Amy Stein on Dr. Melanie Barton Voice of America radio show on Thursday, April 28 at 2PM. Amy Stein is the founder and a practitioner of Beyond Basics Physical Therapy in NYC, specializing in pelvic floor dysfunction, pelvic pain, women’s health, and manual therapy for men, women, and children while taking a holistic approach to each patient’s entire well-being.

Join us for this FREE radio program and learn from a pioneer in the field of physical therapy. Amy is also a contributor to the medical textbook, Female Sexual Pain Disorders: Evaluation and Management, and serves on the board of the International Pelvic Pain Society, since 2007. She is a well recognized expert in her field, lectures nationwide, and has been interviewed in media outlets ranging from the medical segments of popular TV news shows, like ABC’s 20/20 to such newspapers as the New York Daily News to internet sites like www.ourgyn.com. She is also an editor of painchannel.com and a member of the Interstitial Cystitis Association (ICA), National Vulvodynia Association (NVA), as well as many other organizations.

On the Radio Whoa Oh Oh

Learn more about interstitial cystitis (IC) by joining millions from around the world listening to interviews with experts and IC advocates on talk radio.

Blog Talk Radio: ICAF

      Take Charge of Your Health

      March 24, 2011
      Co-hosts: Gloria Prater, IC Patient and Elisabeth Oas, Actress and IC/Endometriosis Patient

VoiceAmerica: The Dr. Melanie Show

      Coping with IC Pain

      Thursday, April 7 at 2PM ET
      Dr. Daniel Brookoff, Interstitial Cystitis Association Medical Advisory Board Member

      IC Diet

      Thursday, April 14 at 2PM ET
      Dr. Barbara Shorter, Interstitial Cystitis Association Medical Advisory Board Member

      Interstitial Cystitis and Pelvic Pain

      FREE Podcast of January 27, 2011 Interview
      Dr. Robert Moldwin, Interstitial Cystitis Association Medical Advisory Board Member

Radio Interview with IC Expert Dr. Robert Moldwin

Voice America Talk Radio Network and the Interstitial Cystitis Association will feature nationally known urologist and author, Dr. Robert M. Moldwin on The Dr Melanie Show radio program on the VoiceAmerica Variety Channel on Thursday, January 27, at 11am Pacific Time. Dr. Moldwin, member of the Interstitial Cystitis Association Medical Advisory Board will discuss diagnosis, treatment options, and current research on IC and pelvic pain syndrome.

“The Dr Melanie Show” airs live on Thursdays at 11am Pacific/1pm Central/2pm Eastern on VoiceAmerica Variety Channel. To access the show, log on at http://www.voiceamerica.com/worldtalkradio/vchannel.aspx?cid=252. All shows will be available in Dr. Melanie Barton’s content library on The VoiceAmerica Variety Channel for on-demand and podcast download, http://www.voiceamerica.com/worldtalkradio/vshow.aspx?sid=1839.

Melanie J. Barton, EdD, better known as “The Dr Melanie Show,” is a holistic psychotherapist since 1985, has a Master's in Social Work and Doctorate in Pastoral Counseling. Dr. Barton is licensed as an independent social worker, and is a member of National Association of Social Workers. She teaches meditation and visualization. She is an advocate for people lost in the maze of the social services system and a mentor to people in recovery. Her specialty is connecting people to mentor one another to shorten healing time.

IC Awareness Week

October 25 to 31, 2010, International

A week dedicated to spreading the word about IC!

ICA activities focused on getting the word out to the public and healthcare providers about IC and the latest treatment options.

Through an interactive ad campaign on WebMD launched last week and running through mid-November, the ICA expects to help about 500,000 online readers learn more about IC and the latest treatment options.

We’ve also focused on helping healthcare providers offer optimal care by enhancing their understanding of the special needs of people with IC:
    • Working in collaboration with the American Nurses Association (ANA), the ICA developed a continuing medical education program to help nurses better understand treatment needs of IC patients.
    • Information Specialist Linda Salin and ICA Board Co-Chair Barb Zarnikow educated nurses and other healthcare providers in the exhibit hall of the Society of Urologic Nurses Association meeting.
    • Via an interview featured online at www.painEDU.com, an educational website for clinicians, ICA Executive Director Barbara Gordon got the word out about IC prevalence and treatment needs.
    • Barb and Eric Zarniknow, ICA Board Co-Chairs, joined Barbara Gordon at the International Pelvic Pain Society. The team disseminated information to this multi-disciplinary group of pelvic pain specialists. Look for more about this meeting in next week’s Conference Reports.

International Pelvic Pain Society: Re-Thinking Chronic Pelvic Pain Evaluation and Management

October 21 to 24, 2010, Chicago, IL
Visit the ICA Booth in the exhibit hall - we’ll be educating pain specialists and other healthcare providers about the latest IC research and treatment options.

Society of Urologic Nurses Association

October 8 to 10, 2010, Boston, MA
Visit the ICA Booth in the exhibit hall - we’ll be educating nurses and other attendees about the latest IC research and treatment options.

CME Poster: Use and Rating of CAM Therapies in Patients with Interstitial Cystitis

September 21 to 24, 2010, Las Vegas, NV
In collaboration with Amy Rejba-Hoffmann, CRNP and ICA Medical Advisory Board member Kristene Whitmore, MD, the ICA presents poster session at the American Academy of Pain Management, 21st Annual Clinical Meeting.

Pain Awareness Month: Uniting Our Voices, Conquering Pain Together

September 2010, United States
All IC patients have the right to timely, effective pain management options. This September, during Pain Awareness Month (PAM), you can connect with Americans from around the country and help bring positive change to the management of pain.

CME Poster: Interstitial Cystitis Patients’ Use and Rating of Complementary and Alternative Medicine Therapies

August 23 to 27, 2010, Toronto, Canada
In collaboration with Amy Rejba-Hoffmann, CRNP and ICA Medical Advisory Board member Kristene Whitmore, MD, both with the Pelvic and Sexual Health Institute in Philadelphia, the ICA presents poster session at the International Continence Society/International Urogynecological Association Joint Annual Meeting, Toronto, Canada.

Free Webcast: The Voices of IC

August 10, 2010, United States
Gain insights from patients, healthcare professionals and advocates touched by IC.

CME and Patient Forum: A Multidisciplinary Approach to Pelvic Pain
  • Continuing Medical Education (CME) program for healthcare providers
    June 4 to 5, 2010, Nashville, TN

  • Patient forum and live international webcast: Finding Better Relief for patients and others affected by IC.
    June 5, 2010, Nashville, TN

Listen to webinar and review answers from the doctors to the questions asked by participants.

American Urological Association (AUA2010)

May 29 to June 1, 2010, Chicago, IL
ICA coverage includes ICHelp YouTube channel interviews with IC experts, summaries of scientific events at each meeting day, and abstracts of IC-related sessions. Our team also staffed a booth in the exhibit hall and disseminated patient education materials to urologists and other healthcare providers. Penny Allen, ICA Update editor wins AUA journalism award.

National Women's Health Week

May 9 to 15, 2010, United States
Weeklong health observance coordinated by the Office on Women's Health, empowering women to make their health a top priority. The ICA is a collaborating organization for National Women's Health Week. Take the Women's Health Week pledge.

ICA 2010 Capitol Hill Walk

March 24 to 25, 2010, Washington, DC 

  • Advocacy Seminar
    March 24, 7 to 8:30PM
    View photos from the event.

  • Walk on Washington
    March 25, 2010, 8AM to 4:30PM
    IC patients, supporters, ICA board members and staff educate Congress about IC.

Check out a summary of the day, slideshow of event, and Congressional visits map.

ICA Patient Forum & Live International Webcast: A to Z on IC

August 23, 2009, Atlanta, GA
The ICA Patient Forum: Clips are available on the IC Help You Tube channel.