Cafe ICA March 2009 ~ volume 9, number 3
IC medical highlights, self-help and coping strategies, and ICA news
Thanks to the sponsors who provided educational grants in support of this issue.
Alaven Pharmaceutical LLC |
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Farr Labs LLC |
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I am so thankful for the ICA and have been a member long enough that I have seen it grow and become a huge source of help to sufferers. I am proud to be a member and look forward to the day that a cure or cures are found, something I'm sure we could not look forward to without the existence of the ICA. Patti H.
After many years of extraordinary behind-the-scenes service to the ICA, Marianne Schuster, co-chair of the ICA’s Board of Directors, announced on March 18, 2009 that she is retiring from the Board. “I've been working with the ICA for more than twenty years, and my attachment to it runs deep. It has been a privilege to be an ICA Board member, and I am so proud of its accomplishments. Please have no doubt that I will continue to offer my support and cheer all of you on,” she said.
Read more.
Executive Director, Barbara Gordon, Medical Advisory Board member, Robert Moldwin, MD, and Support Group Leader, Bonnie Hana, attended a town hall meeting held by the National Institutes of Health’s Office of Research on Women’s Health (ORWH) on March 4 to 6, 2009, in St. Louis, Missouri. The meeting was the first in a series of four conferences aimed at collecting public input into the research agenda for the ORWH. On March 4, Bonnie Hana told her IC story, sharing insights gleaned across more than a decade as an IC support group leader and patient advocate. During the next two days as members of working groups of key opinion leaders, Dr. Moldwin and Ms. Gordon offered input into potential research priorities for ORWH. Upcoming town meetings, all promising additional opportunities for public testimony, include:
- University of California, San Francisco, CA - May 27-29, 2009
- Women and Infants Hospital, Brown University Providence, RI - Sept 2009
- Northwestern University Chicago, IL - October 2009
In an effort to help millions of Americans suffering from multiple chronic medical conditions, the ICA and five other independent nonprofit organizations have come together to form the Overlapping Conditions Alliance.
Read more.
Check out the new website for the Multidisciplinary Approach to Pelvic Pain (MAPP) Research Network, a $37.5 million per year multi-center and multidisciplinary study funded by the National Institutes of Health. The site offers information about research focus areas including epidemiological studies, phenotyping, neuroimaging and neurobiology, and biomarkers. The site will also provide updates on the investigation of the biologic and behavioral relationships between IC/PBS and CP/CPPS and other frequently related symptom-based conditions including fibromyalgia, irritable bowel syndrome (IBS), and chronic fatigue syndrome (CFS). Vulvodynia and migraine headache may also be studied. Visit the new MAPP site at http://www.mappnetwork.org/.
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Use PayPal to:
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NIH Challenge Grants in Health and Science Research
As part of the American Recovery and Reinvestment Act (ARRA) of 2009, the National Institutes of Health (NIH) announces a new initiative: NIH Challenge Grants in Health and Science Research. The initiative will allocate at least $200 million in FYs 2009-2010 to fund $1 million in challenge grants in areas of research that are considered of highest priority. Pelvic pain and several other funding areas relevant to interstitial cystitis (IC) are being considered "high priority."
Deadline for applications: April 27, 2009.
Read more.
Recovery Act Provides Additional NIH Funding Opportunities
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) will receive stimulus funds from the American Recovery and Reinvestment Act (ARRA) of 2009. Below are links to information regarding the availability of NIDDK supplement grants and NIH and NIDDK challenge grant topics:
NIDDK Supplement Program Using American Recovery and Reinvestment Act (ARRA) Funds: Administrative Supplements for research that falls within the scope of an NIDDK-funded project; Administrative Supplements to Foster Summer Research Experience; and Competitive Revisions (also called Competitive Supplements) for research that falls outside the scope of an NIDDK-funded project.
NIDDK Recovery: The NIDDK is working under an accelerated timetable to create a funding plan to meet the stimulus goals set forth in the Recovery Act. The NIDDK will use the ARRA funds to support recently peer-reviewed, highly meritorious applications for research project grants (R01s) and similar mechanisms capable of making significant advances in two years; targeted supplements to current grants that will accelerate the tempo of ongoing science; and additional new activities, including the NIH Challenge Grant program that will focus new efforts on significant health and science problems where measurable progress can be expected in two years. The NIDDK is working closely with the NIH and the DHHS to ensure that scientific merit and quality as well as transparency and accountability will be the guiding principles behind the Institute’s implementation of the ARRA.
NIH Recovery: The Recovery Act provides a total of $10.4 billion, all available for two years -- through September 2010. The NIH expects to spend as much as possible in FY 2009, including $8.2 billion in support of scientific research priorities.
During the past month, the following support groups updated their information on the ICA website. For details, visit the list of support groups by state.
FLORIDA
- Panama City Interstitial Cystitis Support Group: Panama City, FL
- The Vero Beach Interstitial Cystitis Support Group: Vero Beach, FL
MASSACHUSETTS
- Boston-Metrowest Support Group (disbanded)
MICHIGAN
- Female Pelvic Medicine IC Support Group: Grand Rapids, MI
MISSOURI
- W. I. S. H. (Washington University Interstitial Cystitis Support and Health Education Group): St. Louis, MO
NEW YORK
- The Arthur Smith Institute for Urology Interstitial Cystitis Support Group: Hyde Park, NY
- NYC IC Support Group: Manhattan, NY (disbanded)
CANADA
- Alberta, Canada (go to the list of international meetings)
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Support Group Spotlight:
The Cleveland IC Support Group Regional Meeting: “IC We Can Help Each Other”
- Date: May 3, 2009 (Sunday)
- Time: 12:00 p.m. – 2:00 p.m.
- Given by: Heather Schwarz
- Place: Strongsville Recreation Center
18100 Royalton Road
Strongsville, OH 44136
- Topic: IC and Alternative Treatments
- Guest Speakers:
Catherine M. Simone, author of To Wake in Tears: Understanding Interstitial Cystitis; Along the Healing Path: Recovering from Interstitial Cystitis; Awakening Through the Tears: IC and The Mind/Body/Spirit Connection.
Dr. Ching-Yao Shi, IC researcher and practitioner of acupuncture, NAET, and Chinese herbal medicine.
- RSVP: The meeting is free but please RSVP by e-mail: IC_HeatherSchwarz@Yahoo.com
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The International Journal of Clinical Practice features Diagnostic Options for Early Identification and Management of Interstitial Cystitis ⁄ Painful Bladder, in its December 2008 issue. Written by two renowned IC experts, John B. Forrest, MD, of Urologic Specialists of Oklahoma in Tulsa, and Robert M. Moldwin, MD, of the Smith Institute for Urology, New Hyde Park, New York, who is a member of the ICA’s Medical Advisory Board, this review article reaches a worldwide readership.
Read More.
Our collective voices are making a difference! You may recall the National Pain Care Policy Act (HR 2994) that passed through the United States House in 2008 and was up for Senate vote when the 110th Congress ended. early March 2009, the Act (renamed HR 756) passed through the United States House of Representative’s Energy and Commerce Committee, passed through the House this week, and is currently for Senate vote.
Read More.
Does one or more of these conditions affect your life?
Chronic Fatigue Syndrome • Endometriosis • Fibromyalgia • Interstitial Cystitis (IC) • Irritable Bowel Syndrome (IBS) • Temporomandibular Joint and Muscle (TMJ) Disorders • Vulvodynia
Please plan to attend a special presentation to learn more about these overlapping medical conditions.
- When: Tuesday, April 28, 2009 at 6:00 p.m. – 9:00 p.m.
- Where: Crowne Plaza Milwaukee-Wauwatosa Hotel 10499 Innovation Drive, Wauwatosa, Wisconsin 53226 (Located just south of W. Watertown Plank Road between Hwy 45 and N Mayfair Road)
- Cost: No cost to attend. Reservations recommended.
- Register: Call Toll Free: 1-888-964-2001 or E-mail: overlappingconditions@iffgd.org
Presentations and Guest Speakers:
- Advancing the Pain Research Agenda at the National Institutes of Health, John W. Kusiak, PhD, Director, Molecular and Cellular Neuroscience Program, National Institute of Dental and Craniofacial Research, National Institutes of Health, Bethesda, MD
- How to Talk to Your Doctor -- You are Not Alone, Lin Chang, MD, Professor of Medicine, Division of Digestive Diseases, Department of Medicine, UCLA David Geffen School of Medicine, Los Angeles, CA
- Complex Persistent Pain Conditions: Unique & Shared Pathways of Vulnerability, William Maixner, PhD, DDS, Professor, Director, Center for Neurosensory Disorders, University of North Carolina School of Dentistry, Chapel Hill, NC
This meeting is sponsored by the International Foundation for Functional Gastrointestinal Disorders (IFFGD) and The TMJ Association.
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The ICA Update features artwork created by people with IC on its cover four times a year.
If you are an artist and would like your work to be considered for an upcoming ICA Update cover, please contact the ICA via email at:
ICAmail@ichelp.org
Please be sure to include samples of your artwork with your email.
We realize that there are many, many talented visual artists with IC, yet there are only four published issues of the ICA Update each year. We cannot promise that we will be able to use everyone's artwork.
Thank you for your submission. We very much appreciate and enjoy viewing all of the artwork. |
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I’m looking forward to the kind of person I can be without having IC control my life! It feels so good to be able to talk with someone who’s been there and knows about all of these confusing choices. Thank you so much. Tiffany
The University of South Florida is currently recruiting people with IC, 18 years or older, for an online nutrition study. The goal of the study is to learn more about the impact of diet on IC. Recruitment is currently open. To participate go to the online survey. Please allow 10 minutes to complete the survey. Thanks for your help!
Now that spring is here, are you sneezing, and is your bladder acting up along with it? It's something that IC doctors have noticed. Usually, they prescribe antihistamines, which ease the sneezing, stuffy nose, and itchy eyes along with helping your bladder. But have you done more to get your allergies tested and treated? And has that had any effect on your IC? Whether it’s spring or fall pollen or mold, dust, pet, or food allergies, if you can connect them with your IC symptoms and you got help from allergy therapy, especially from shots, we'd like to talk to you and to your allergist. Please e-mail us at ICAmail@ichelp.org or call us at 800-HELP ICA (435-7422) and let us know how to get in touch with you.
What is your best advice to stop an IC flare in its tracks? Voice your opinion on the number one piece of advice to give someone who is newly diagnosed about how to cope with a flare by participating in the Quick Survey located on the right side of the ICA’s homepage. Over 700 participated in the previous Quick Survey about how to define an IC flare. Here are the results:
How do you define an IC flare?
- Sudden increased intensity of symptoms (89, 12%)
- Subtle worsening of symptoms (30, 4%)
- Dramatic increase in IC symptoms across several hours (51, 7%)
- Period of extreme pain with increased urinary frequency/urgency across several days or weeks (141, 19%)
- Worsening of symptoms from baseline (36, 5%)
- All of the above (385, 53%)
Registered Dietitian Julie Beyer, MA, RD, addresses IC and diet questions in this column and helps guide people with IC in the right direction and to make the right choices.
This month's featured Q & A comes from Emily: I've heard that flax seed oil and fish oil (omega-3 fatty acids) are good for IC symptoms. Is there one better than the other? Do you have any particular brand that you recommend? Also, is there any difference between the liquid and capsule? Thanks so much!
Read Julie Beyer’s answer.
Julie Beyer, MA, RD, is the author of Confident Choices: Customizing the Interstitial Cystitis Diet and Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder.
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TO ASK JULIE BEYER A QUESTION ABOUT YOUR DIET CONCERNS PLEASE CONTACT THE ICA AT:
ICAmail@ichelp.org
SUBJECT LINE: Diet Bytes
While we cannot promise that all questions will be answered due to space and time limitations, please check Cafe ICA in the coming months for lots of great IC diet suggestions by Julie Beyer. |
Like other chronic illnesses, IC can have a disruptive effect on sexuality and relationships. As one IC patient observed, having IC exaggerates the problems everybody has with sex -- communication, relationships, and how to please our partners. The ICA has two new, free online fact sheets available that offer practical solutions to your IC and intimacy issues:
Thank heavens you exist! Helps me not to feel like the Lone Ranger! Mary L.
Every month, we update you on the latest published research on IC and help you understand what it means for you now and for treatments that could help you in the future.
Treatments/Drug Discovery
Urologists Give Guidance on Diagnosing, Treating IC in Kids
Sea J, Teichman JM. Paediatric painful bladder syndrome/interstitial cystitis: diagnosis and treatment. Drugs. 2009;69(3):279-96.
This article has done a great service by acknowledging that IC does indeed exist in children and adolescents and needs to be treated carefully. The authors reviewed the literature on the potential causes of IC, the disease process, tests, and treatment.
Read more.
Multispecialty Panel Makes IC Diagnosis, Treatment Recommendations
Forrest JB, Mishell DR Jr. Breaking the cycle of pain in interstitial cystitis/painful bladder syndrome: toward standardization of early diagnosis and treatment: consensus panel recommendations. J Reprod Med. 2009 Jan;54(1):3-14.
Chronic pelvic pain, often the result of IC/painful bladder syndrome (PBS), affects about 15 percent of women in the United States. Even though IC/PBS is often the source, there are no guidelines for diagnosis and treatment, so it takes a long time for patients to get treated appropriately.
Read more.
Pudendal Neuralgia Called Real but Rare
Stav K, Dwyer PL, Roberts L. Pudendal neuralgia. Fact or fiction? Obstet Gynecol Surv. 2009 Mar;64(3):190-9.
This review article takes a look at the evidence so far for pudendal neuralgia (PN) or pain along the course of the pudendal nerve. The nerve and its branches serve the anal and genital areas. PN is sometimes misdiagnosed as IC, unexplained vulvodynia, endometriosis, unexplained testicular pain, chronic pelvic pain syndrome, or other pelvic disorders.
Read more.
Botox Treatment Research Makes Progress
Smith CP. Botulinum toxin in the treatment of OAB, BPH, and IC. Toxicon. 2009 Mar 4. [Epub ahead of print]
Research on botulinum toxin, especially type A (Botox), is ongoing in IC, overactive bladder (OAB), and benign prostatic hyperplasia (BPH) in men.
Read more.
Botox Finding a Place in Vulvodynia, Pelvic Floor Therapy
Abbott J. Gynecological indications for the use of botulinum toxin in women with chronic pelvic pain. Toxicon. 2009 Mar 3. [Epub ahead of print]
Injecting botulinum toxins (usually botulinum toxin A or Botox) is being tried and studied in pelvic pain conditions that are often though of as gynecologic, most notably provoked vestibulodynia (also called vulvar vestibulitis) and pelvic floor spasm.
Read more.
Research Group Developing Gene Therapy for IC Pain
Goins WF, Goss JR, Chancellor MB, de Groat WC, Glorioso JC, Yoshimura N. Herpes simplex virus vector-mediated gene delivery for the treatment of lower urinary tract pain. Gene Ther. 2009 Feb 26. [Epub ahead of print]
This abstract explains this research group’s rationale for their IC gene therapy research, which is progressing.
Read more.
Receptors Are There for Potential New Cannabinoid Bladder Drugs
Tyagi V, Philips BJ, Su R, Smaldone MC, Erickson VL, Chancellor MB, Yoshimura N, Tyagi P. Differential Expression of Functional Cannabinoid Receptors in Human Bladder Detrusor and Urothelium. J Urol. 2009 Feb 21. [Epub ahead of print]
Researchers are already looking at cannabinoid (marijuana-related) drugs to soothe IC bladders, but until now, no one was entirely sure that the receptors were there for the drugs to act on.
Read more.
Diagnosis/Assessment
Experts Outline Current Thinking on Name, Definition, Diagnosis
Hanno P, Dmochowski R. Status of international consensus on interstitial cystitis/bladder pain syndrome/painful bladder syndrome: 2008 snapshot. Neurourol Urodyn. 2009 Mar 3. [Epub ahead of print]
The Society for Urodynamics and Female Urology brought together IC/painful bladder syndrome (PBS) experts from Europe, Asia, and the United States to get a snapshot of current thinking on the name and definition of the syndrome and how do evaluate it.
Read more.
Multidisciplinary Approach Emphasized for Chronic Pelvic Pain
Vincent K. Chronic pelvic pain in women. Postgrad Med J. 2009 Jan;85(999):24-9.
This article in a general medical journal emphasizes that pelvic pain conditions frequently overlap medical specialties because of nerve and physical connections between pelvic organs.
Read more.
Epidemiology
Prevalence of PBS in Japan Estimated at 0.265 Percent
Inoue Y, Mita K, Kakehashi M, Kato M, Usui T. Prevalence of painful bladder syndrome (PBS) symptoms in adult women in the general population in Japan. Neurourol Urodyn. 2009 Mar 3. [Epub ahead of print]
Through a web-based survey, these researchers gathered information about symptoms of painful bladder syndrome (PBS) from some 32,000 Japanese women 20 to 88 years old.
Read more.
Etiology
Genetics Researchers Urge Genome-wide Studies for IC and Chronic Prostatitis
Dimitrakov J, Guthrie D. Genetics and Phenotyping of Urological Chronic Pelvic Pain Syndrome. J Urol. 2009 Feb 19. [Epub ahead of print]
This review article points out that treatment for IC/painful bladder syndrome and chronic prostatitis/chronic pelvic pain syndrome are still symptom based, and we don’t know the cause or causes. New ideas are emerging, however, about the role of the sympathetic nervous system and the hypothalamic-pituitary-adrenal (HPA) axis and about the genetic basis of these conditions.
Read more.
Sensitive IC Bladder Lining Receptors Point in New Research Direction
Gupta GN, Lu SG, Gold MS, Chai TC. Bladder urothelial cells from patients with interstitial cystitis have an increased sensitivity to carbachol. Neurourol Urodyn. 2009 Mar 12. [Epub ahead of print]
Muscarinic receptors are known for the role they play in the bladder muscle because these are the ones that overactive bladder drugs target. But the receptors exist in bladder lining, too.
Read more.
Connection Gets Clearer Between Bladder Inflammation, Pain Transmission
Hayashi Y, Takimoto K, Chancellor MB, Erickson KA, Erickson VL, Kirimoto T, Nakano K, de Groat WC, Yoshimura N. Bladder hyperactivity and increased excitability of bladder afferent neurons associated with reduced expression of Kv1.4 {alpha}-subunit in rats with cystitis. Am J Physiol Regul Integr Comp Physiol. 2009 Mar 11. [Epub ahead of print]
What’s the connection between inflammation in IC bladders and pain signaling in nerves? It’s not well known, so this team took a closer look at the function of nerve cells that transmit signals from inflamed bladders.
Read more.
Stress Factors, Gene Modulators May Bring New Theories, Therapies
Buffington CA. Developmental Influences on Medically Unexplained Symptoms. Psychother Psychosom. 2009 Mar 9;78(3):139-144. [Epub ahead of print]
This review suggests that developmental factors may play a role in some cases of medically unexplained symptoms.
Read more.
IC Patients More Easily Startled
Twiss C, Kilpatrick L, Craske M, Buffington CA, Ornitz E, Rodríguez LV, Mayer EA, Naliboff BD. Increased Startle Responses in Interstitial Cystitis: Evidence for Central Hyperresponsiveness to Visceral Related Threat. J Urol. 2009 Mar 13. [Epub ahead of print]
These researchers take the startle reflex to be a marker of emotional circuits in the brain that may amplify the response to pain.
Read more.
The ICA is your best source on the web for books, articles, transcripts and other resources covering all aspects of interstitial cystitis. To order, access the ICA Resource Materials Guide online or 800 HELP ICA (800-435-7422).
Please note that most items have two prices: member (discounts on most publications) and nonmember. Becoming a member of the ICA will pay off in the amount you can save on the many resources offered! For more information on joining the ICA and becoming a member click here.
Many types of over-the-counter (OTC) products can be helpful in relieving IC symptoms. Local pharmacies and supermarkets sell most. Some are only sold on the internet. Check out the review of over-the-counter products on the ICA website.
For informational purposes, we provide brand names and links to product sites. These links may route you to commercial sites with promotional material not necessarily endorsed by the ICA.
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Disclaimer: The ICA does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. In all cases, the ICA recommends that you consult your own physician regarding any course of treatment or medication.
© 2009 The Interstitial Cystitis Association. All Rights Reserved.
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