Cafe ICA September 2009 ~ volume 9, number 9
IC medical highlights, self-help and coping strategies, and ICA news
My greatest thanks go to the ICA for all the help we receive so quickly. You have no idea what peace of mind I have knowing you are available to help us. Shirley
There were over 100 questions submitted both online and in person at the IC Forum that took place in August. Presenters and ICA staff collaborated to answer each and every one of those questions, even those not answered during the forum. The answers to those questions, as well as a link to view the entire webcast, are now available on the ICA website.
Read more.
Missed the forum? Check out the A to Z on IC webcast at http://www.icawebcast.org/.
During the next few months the ICA will send out a series of surveys so you can tell us how we’re doing. Your responses will help guide development of future programs. We hope this ultimately results in a better organization for everyone. Thanks for your help in making it happen!
If you haven’t already, take this ICA Survey now.
On the ICA’s 2009 Complementary and Alternative Medicine Survey, hundreds of you told us that playing or listening to music can ease your IC. If you haven’t already, please click here to fill out our Music to Ease IC Survey and tell us what really helps you so we can pass it on.
The ICA is proud to participate in the Combined Federal Campaign (CFC) through our federation membership in Medical Research Charities (MRC). Look for us under our Federation name in the CFC directory. Our CFC number for your pledge form is #11718.
Federal Government Employees
State & Local Government Employees
For state and local campaigns, ask your payroll or benefits person for the code number for ICA. In some cases you can just write our name on your pledge form, but be sure to check with your employer for the correct process.
Read more about how to donate.
Healthcare professionals and patient advocates working to alleviate suffering and improve the care of the millions of Americans living with undertreated pain now have a new resource to help them create greater understanding of this serious national health problem.
Read More
The newly appointed director of NIH, Francis Collins, MD, PhD, held a town hall meeting for non-profit and health organizations on Wednesday, September 9 to discuss some of his plans for NIH over the next several years.
Read More.
NIH Director, Dr. Francis Collins, invites patient organizations and healthcare agencies to submit 1-2 page emails with suggestions regarding issues that they feel NIH needs to address over the coming months or years. Submit your 1-2 page email to Dr. Collins at NIH-Listens@NIH.gov. If you’d like to also share your comments with the ICA, please feel free to send them to icamail@ichelp.org.
September was Pain Awareness Month and a variety of conferences and events, held throughout the country, highlighted pain awareness and advances in pain research and treatment. Check out their highlights:
Watson Pharmaceuticals is currently recruiting participants for a clinical trial studying the safety and effectiveness of Uracyst. Women who are 18 years of age and have a diagnosis of IC/PBS may be eligible to participate.
Read More.
Did you recently submit a research proposal to the National Institutes of Health (NIH) that did not get funded? A new database is being created to showcase non-funded applicants deemed significant and of scientific and technical merit.
Read More.
We’ve been busy this month updating information for you to use. Check out our:
- updated IC/PBS Diet Guidelines, including a new and improved IC/PBS Food List
- information about pain diaries and how they might help you manage your pain
- homepage quicklink to the ICA Facebook Causes page
Over 600 people responded to September’s ICA Quick Poll about their average level of pain. The majority of participants reported that they didn’t have an average level of pain, but rather that their pain varied.
New ICA Quick Poll: Click here to respond to our new ICA Quick Poll about clinical trial participation. View the current ICA Quick Poll as well as all previous Quick Poll results by going to the boxed area on the right side of the ICA’s homepage.
I have IC and, frankly, I am sick and tired of being sick and tired. I finally admitted that I had to watch my diet, but giving up my coffee and diet colas was and still is very hard. I am a kindergarten teacher and even with all of the activity around me, by mid-afternoon I could put my head down on my desk and fall sound asleep. In fact one day I went home “sick” in the middle of the day because I couldn’t take it anymore. After that, I started to sneak caffeine back into my diet, but now my symptoms are acting up. What am I supposed to do? Is there anything I can do to get some energy? Thanks for any help you can give.
Read More
To find a support group in your areas, check out listings of support groups by state and around the world on the ICA website.
Updates made to the following listings:
- PA: Darlington and Cranberry Township
- Nepean, ON, Canada: : Painful Bladder Syndrome/Interstitial Cystitis Support Group
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Support Group Spotlight:
South Florida
WHERE: Center for Independent Living of Broward
4800 North State Road 7, Building F, Suite 102
Fort Lauderdale, FL 33319
Marcia Gordon
MGordon751@aol.com
954-752-4746 |
Thank you so much for your response to my recent question about IC. I can't begin to tell you how much it helped with not only the informational content, but to know that there is such a wonderful organization out there to provide assistance. I have since joined the ICA. BD
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
Chondroitin Latches onto Damaged Bladder Lining
Hauser PJ, Buethe DA, Califano J, Sofinowski TM, Culkin DJ, Hurst RE. Restoring Barrier Function to Acid Damaged Bladder by Intravesical Chondroitin Sulfate. J Urol. 2009 Sep 16. [Epub ahead of print]
Chondroitin sulfate bladder instillations may work by latching on tight to damaged areas of the bladder lining, which restores the barrier function.
Read more.
European Association of Urology Issues Chronic Pelvic Pain Guidelines
Fall M, Baranowski AP, Elneil S, Engeler D, Hughes J, Messelink EJ, Oberpenning F, de C Williams AC. EAU Guidelines on Chronic Pelvic Pain. Eur Urol. 2009 Aug 31. [Epub ahead of print]
The European Association for Urology issued guidelines on diagnosis and treatment of all types of chronic pelvic pain, including chronic prostate and bladder pain syndromes, urethral pain, scrotal pain, pelvic pain in gynecologic practice, and neurogenic dysfunction.
Read more.
Anesthetic Instillation Improves Pain, Frequency
González PA, Ruiz JI, Cubillana PL, Iñiguez GD, Morcillo JC, Albacete MP. New approach in treatment of pelvic chronic pain syndrome (CPPS). [Article in Spanish] Actas Urol Esp. 2009 Jun;33(6):681-5.
Instillation of a steroid, anesthetic, and antibiotic solution eased pain and frequency for patients at a clinic in Spain, where instillation is a new therapeutic option.
Read more.
Botox So Far
Rao A, Abbott J. Using botulinum toxin for pelvic indications in women. Aust N Z J Obstet Gynaecol. 2009 Aug;49(4):352-7.
This literature review for gynecologists concludes that the conditions mostly likely to be improved by botulinum toxin (Botox) therapies are pelvic floor spasm, daily pelvic pain, and pain with intercourse.
Read more.
Multimodal Approach Helpful, but Needs Updating
Hanley RS, Stoffel JT, Zagha RM, Mourtzinos A, Bresette JF. Multimodal therapy for painful bladder syndrome / interstitial cystitis: pilot study combining behavioral, pharmacologic, and endoscopic therapies. Int Braz J Urol. 2009 Jul-Aug;35(4):467-74.
Patients improved in a pilot study by some US urogynecologists of multiple therapies for IC, but the treatments were not the most modern or helpful by today’s standards.
Read more.
Diagnosis/Assessment
It Isn’t Always IC—Urologists Cautioned To Be Thoughtful, Thorough
Fletcher SG, Zimmern PE. Differential diagnosis of chronic pelvic pain in women: the urologist's approach. Nat Rev Urol. 2009 Sep 1. [Epub ahead of print]
There are many causes of chronic pelvic pain in women, and there are many different causes of IC-like symptoms, so diagnosis needs to be done carefully and thoroughly.
Read more.
Social Issues
IC, Chronic Prostatitis Patients’ Pain Stories Bring New Perspective
Hatchett L, Fitzgerald MP, Potts J, Winder A, Mickelberg K, Barrell T, Kusek JW; Urologic Pelvic Pain Collaborative Research Network. Life impact of urologic pain syndromes. J Health Psychol. 2009 Sep;14(6):741-50.
IC and chronic prostatitis/chronic pelvic pain (CP/CPPS) patients’ pain stories showed that fatigue is a symptom that hasn’t been well recognized.
Read more.
Etiology
IC Patients May Not Get Used to Certain Sensations
Lowenstein L, Kenton K, Mueller ER, Brubaker L, Heneghan M, Senka J, Fitzgerald MP. Patients with painful bladder syndrome have altered response to thermal stimuli and catastrophic reaction to painful experiences. Neurourol Urodyn. 2009;28(5):400-4.
IC patients’ nerves may not be more sensitive to bothersome sensations, but patients may not be able to get used to the sensations.
Read more.
Review Shows Overlap Between IC and Other Conditions
Rodríguez MA, Afari N, Buchwald DS; National Institute of Diabetes and Digestive and Kidney Diseases Working Group on Urological Chronic Pelvic Pain. Evidence for Overlap Between Urological and Nonurological Unexplained Clinical Conditions. J Urol. 2009 Sep 14. [Epub ahead of print]
Medical literature details considerable overlap between IC and many other conditions, especially irritable bowel syndrome (IBS).
Read more.
Uncontrolled Study Suggests Role of Nanobacteria
Zhang QH, Shen XC, Zhou ZS, Chen ZW, Lu GS, Song B. Decreased nanobacteria levels and symptoms of nanobacteria-associated interstitial cystitis/painful bladder syndrome after tetracycline treatment. Int Urogynecol J Pelvic Floor Dysfunct. 2009 Sep 17. [Epub ahead of print]
These Chinese researchers said they grew microbes “similar to nanobacteria” from IC bladder tissue.
Read more.
Epidemiology
Age, Time to Diagnosis Make a Difference in Symptoms
Zámecník L, Hanus T, Pavlík I, Dundr P, Povýsil C. Statistical analysis of symptoms, endoscopy and urothelial morphology in 58 female bladder pain syndrome/interstitial cystitis patients. Urol Int. 2009;83(2):193-9. Epub 2009 Sep 10.
At a Czech hospital, the kind of treatment didn’t make a difference in outcomes for IC patients over the long term, but age and the time it took to get a diagnosis did.
Read more.
Symptoms, Outcomes Don’t Correlate with European Definition
Richter B, Hesse U, Hansen AB, Horn T, Mortensen SO, Nordling J. Bladder pain syndrome/interstitial cystitis in a Danish population: a study using the 2008 criteria of the European Society for the Study of Interstitial Cystitis. BJU Int. 2009 Sep 14. [Epub ahead of print]
Investigators tried to correlate the European Society for the Study of Interstitial Cystitis (ESSIC) definition of bladder pain syndrome/IC (BPS/IC) with symptoms, outcomes, and other characteristics; however , their evaluation was inconclusive based on this population of Danish patients.
Read more.
Cystoscopy, Biopsy May Help Characterize Disease
Wyndaele JJ, Van Dyck J, Toussaint N. Cystoscopy and bladder biopsies in patients with bladder pain syndrome carried out following ESSIC guidelines. Scand J Urol Nephrol. 2009 Aug 25:1-5. [Epub ahead of print]
Somewhat unlike the study of Danish patients, these Belgian urologists found that in patients with severe disease, although there was no relationship between how bad the bladder looked during cystoscopy and hydrodistention and the appearance of bladder tissue under the microscope, there was a relationship the cystoscopic appearance and inflammatory infiltration, numbers of mast cells in the bladder muscle, and swelling in the bladder stromal layer.
Read more.
Basic Research
Nerve Growth Factor, Not PGE2, Is High in IC, OAB
Liu HT, Tyagi P, Chancellor MB, Kuo HC. Urinary nerve growth factor but not prostaglandin E2 increases in patients with interstitial cystitis/bladder pain syndrome and detrusor overactivity. BJU Int. 2009 Sep 14. [Epub ahead of print]
IC patients and some patients with overactive bladder (OAB) have high levels of nerve growth factor (NGF), but not prostaglandin E2 (PGE2), in their urine. The finding may have implications for both detection and treatment.
Read more.
Receptor for New Molecule May Play Top Role in IC Inflammation
Kutlu O, Akkaya E, Koksal IT, Bassorgun IC, Ciftcioglu MA, Sanlioglu S, Kukul E. Importance of TNF-related apoptosis-inducing ligand in pathogenesis of interstitial cystitis. Int Urol Nephrol. 2009 Aug 25. [Epub ahead of print]
Turkish urologists have identified the cellular receptor in IC patients’ bladder tissue that may be the most important one in IC inflammation.
Read more.
Medical Education
Spasm of Pelvic Floor Muscle Can Cause Pelvic Pain
Hull M, Corton MM. Evaluation of the levator ani and pelvic wall muscles in levator ani syndrome. Urol Nurs. 2009 Jul-Aug;29(4):225-31.
This article encourages nurses to learn about pelvic floor muscles and how to identify spasm, which can cause pelvic pain.
Read more.
This new 2009 Guided Imagery CD from Beaumont Hospital’s WISH program has two tracks: “Rest and Relax,” basic relaxation for anyone, and “Soothing Shore,” specific to women with pelvic pain, IC, or vulvar pain.
This 2007 CD from Beaumont Hospital’s WISH program has two tracks, “Just Breathe” for general relaxation and “Letting Go,” which is very specific for IC and pelvic pain.
NOW AVAILABLE: This new CD for men has two tracks, “Riverbank,” a guide along a peaceful riverbank for basic relaxation, and “Journey into Nature,” specific to men with pelvic pain or chronic prostatitis/chronic pelvic pain syndrome.
Physical therapy for treating underlying pelvic floor dysfunction in people with IC can yield positive results and provide significant pain relief. Learn more about working with a physical therapist and how to find one.
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 call 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.
Check out the new Conferences section of the Newsroom on the ICA website! Meetings of interest to healthcare providers, researchers, patients, and others are posted online in an interactive, calendar format.
Conferences adding during the past month include:
Helping Women Cope With Painful Bladder Syndrome
Traverse City, MI
Moving Into the Future – New Dimensions and Strategies for Women's Health Research for the National Institutes of Health (NIH)
Chicago, IL
New Initiatives in Treatment, Diagnosis, and Disability for Chronic Fatigue Syndrome (ME/CFS)
Eatontown, NJ
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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