Cafe ICA October 2009 ~ volume 9, number 10
IC medical highlights, self-help and coping strategies, and ICA news
Thank you again for your speedy reply. The info you sent me was very helpful in the first email I received. I will try and donate in the very near future. This site is very helpful to a lot of people and if my donation will help to get more information to help others I will gladly do so. Calita
The nerve growth factor inhibitor tanezumab is showing great promise for knocking down IC pain. The ICA’s own Medical Advisory Board member, Robert Evans, MD, presented the results of the first proof-of-concept study in IC this month at the 20th Annual Clinical Meeting of the American Academy of Pain Management meeting in Phoenix, Arizona.
Read more.
The FDA recently launched a website for patients with information on how to dispose of certain drugs, many of which are commonly prescribed for IC. Are you medicines on the list?
Read more.
At the American Academy of Pain Management’s annual clinical meeting in Phoenix this month, providers learned how to integrate the latest traditional and alternative therapy into their practices.
Read more.
October 19-23 2009 was the 2nd Annual IC Awareness Week. Healthcare providers and patients alike raised awareness about IC through press releases, seminars, and individual efforts. The ICA extends a big thanks to everyone who took even 30 seconds to educate someone about IC this week.
On October 15 the FDA held a day-long public workshop to de-mystify the FDA Center for Drug Evaluation and Research’s (CDER) Investigational New Drug (IND) process. Find power point presentations from all presenters and more at the event website.
Read more.
We're rapidly expanding our Facebook presence and now have a Facebook fan page in addition to our cause! Our goal is to reach 3,000 fans by the end of 2009. Help us meet our goal by becoming an ICA Facebook Fan! Just follow the link on our homepage!
Do you tweet? So do we! Follow the ICA on Twitter! You'll find our Twitter link on the ICA homepage.
Although IC Awareness Week has come to an end, the effort to raise awareness about IC doesn’t have to. Take 5 minutes this week to spread the word about IC Awareness. Send an email to your friends and family; put up a poster at school, work, or church; write an article for your neighborhood newspaper; update your Facebook or Twitter profiles with a link to the ICA website; blog about IC. Encourage people to learn what IC is, how to help to raise awareness, and how they can help to find a cure.
A four-hour workshop on IC and chronic pelvic pain syndrome in men from the International Continence Society meeting in San Francisco is available for viewing as an online webcast. The workshop aimed to help healthcare professionals deliver the the best care possible for these conditions.
On November 15, the Center for Sexual Health and Rehabilitation in San Francisco will be holding an intensive workshop for individuals and couples who have sexual concerns related to health challenges. Learn more about the workshop on the event website.
We’ve been busy this month updating information for you to use. Check out our:
- Homepage quicklink to the ICA Facebook Fan page
- Homepage quicklink to the ICA Twitter account
We asked and you answered. Over 400 people responded to the October ICA Quick Poll on clinical trial participation. The majority of people had never participated in a clinical trial, but more had than you might think.
New ICA Quick Poll: Click here to respond to our new ICA Quick Poll about dining out with IC. 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.
Determining what to eat during an IC flare can be difficult. Foods that are the least bothersome to eat may not be on hand in your kitchen and you may not feel up to going out to get them during a flare. However, this month Julie Beyer, RD offers some helpful suggestions on what to eat during a flare as well as how to stock your kitchen in preparation for a flare.
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:
- Missouri, St. Louis: W. I. S. H. (Washington University Interstitial Cystitis Support and Health Education Group)
- Canada, Ontario: Kitchener-Waterloo Interstitial Cystitis Support
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Support Group Spotlight:
WHEN: Thursday, November 19
6:30 Social, 7 P.m. Meeting
WHERE: Barnes West Hospital--Cafeteria
Dr. Henry Lai, MD; W.U.
St. Louis, MO
"MAPP Research on IC"
How you can participate to understand IC. |
Thanks for all you do. I was diagnosed with IC a little more than a year ago and I believe I am in remission today. With information that I found on your website, I became actively involved in my treatment - and I obtained an accurate diagnosis within a few months. I plan to make periodic donations because there would be a HUGE void in the IC community without the advocacy from ICA. Jayne
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
Pudendal Nerve Stimulation Can Help when Sacral Doesn’t
Peters KM, Killinger KA, Boguslawski BM, Boura JA. Chronic pudendal neuromodulation: Expanding available treatment options for refractory urologic symptoms. Neurourol Urodyn. 2009 Sep 28. [Epub ahead of print]
Urologists at William Beaumont Hospital in Royal Oak, Michigan, have been trying a different approach to neurostimulation in IC and overactive bladder patients, targeting the pudendal nerve rather than one of the sacral nerves.
Read more.
Diagnosis/Assessment
New IC Urine Marker Identified
Fukui Y, Kato M, Inoue Y, Matsubara A, Itoh K. A metabonomic approach identifies human urinary phenylacetylglutamine as a novel marker of interstitial cystitis. J Chromatogr B Analyt Technol Biomed Life Sci. 2009 Sep 26. [Epub ahead of print]
Japanese biotechnologists have identified a potential urine marker for IC with ultra-performance liquid chromatography-mass spectrometry.
Read more.
New Questionnaire Useful for both IC and CP/CPPS
Clemens JQ, Calhoun EA, Litwin MS, McNaughton-Collins M, Kusek JW, Crowley EM, Landis JR; Urologic Pelvic Pain Collaborative Research Network. Validation of a Modified National Institutes of Health Chronic Prostatitis Symptom Index to Assess Genitourinary Pain in Both Men and Women. Urology. 2009 Oct 1. [Epub ahead of print]
Because IC and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) have similarities and are often being studied together, these researchers developed and tested a questionnaire, called the Genitourinary Pain Index (GUPI), that would be useful for both conditions in both sexes.
Read more.
Symptoms, Pain Correlate with Bladder Volume Urodynamic Tests
Sastry DN, Hunter KM, Whitmore KE. Urodynamic testing and interstitial cystitis/painful bladder syndrome. Int Urogynecol J Pelvic Floor Dysfunct. 2009 Oct 16. [Epub ahead of print]
Some urodynamic tests showing low urine volume and more pain as the bladder fills correlate well with pain scores and higher scores on the O’Leary-Sant Symptom Index.
Read more.
In-office Hydrodistention after Lidocaine Instillation Looks Safe
Aihara K, Hirayama A, Tanaka N, Fujimoto K, Yoshida K, Hirao Y. Hydrodistension under local anesthesia for patients with suspected painful bladder syndrome/interstitial cystitis: Safety, diagnostic potential and therapeutic efficacy. Int J Urol. 2009 Oct 11. [Epub ahead of print]
These Japanese urologists did cystoscopy and hydrodistention after lidocaine instillation in 36 patients with suspected IC to check safety, usefulness in diagnosis, and therapeutic effects of this approach.
Read more.
Social Issues
Diagnosing IC Early Can Avoid Unnecessary Hysterectomy
Chung MK, Jarnagin B. Early identification of interstitial cystitis may avoid unnecessary hysterectomy. JSLS. 2009 Jul-Sep;13(3):350-7.
By combing through the medical literature on IC and hysterectomy back to 1990, these investigators showed that hysterectomy is performed more often in patients with undiagnosed IC than in patients with a confirmed diagnosis.
Read more.
Epidemiology
Rate of IC in Vulvodynia Patients May Be Very High
Kahn BS, Tatro C, Parsons CL, Willems JJ. Prevalence of Interstitial Cystitis in Vulvodynia Patients Detected by Bladder Potassium Sensitivity. J Sex Med. 2009 Oct 20. [Epub ahead of print]
Some 80 percent of vulvodynia patients may have IC.
Read more.
Etiology
Colon-Bladder Cross-sensitization Takes Place in Periphery
Brumovsky PR, Feng B, Xu L, McCarthy CJ, Gebhart GF. Cystitis increases colorectal afferent sensitivity in the mouse. Am J Physiol Gastrointest Liver Physiol. 2009 Oct 1. [Epub ahead of print]
In these animal studies, researchers found that irritation of the bladder increased the sensitivity of colon and rectal afferent (sensing) nerves to mechanical stimulation (such as stretching) and increased the proportion of colon and rectal afferents that sensitive to chemical changes.
Read more.
Medical Education
Providers for Midlife Patients Get IC Education
Dasgupta J, Tincello DG. Interstitial cystitis/bladder pain syndrome: An update. Maturitas. 2009 Oct 16. [Epub ahead of print]
This update on the latest ideas about the cause, the terminology, and the treatments for IC appeared in a journal aimed at a broad cross-section healthcare professionals who take care of patients at midlife.
Read more.
Review Helps Educate Kidney Specialists Worldwide
Moutzouris DA, Falagas ME. Interstitial Cystitis: An Unsolved Enigma. Clin J Am Soc Nephrol. 2009 Oct 1. [Epub ahead of print]
This review article in an international journal for kidney specialists informs them about IC and reminds them to keep the IC diagnosis in mind when they see patients with chronic urinary symptoms.
Read more.
Recognition of IC as Potential Cause of Pelvic Pain Growing Worldwide
Siedentopf F. Chronic pelvic pain in women from a gynecologic viewpoint. [Article in German] Urologe A. 2009 Oct;48(10):1193-4,1196-8.
This article by a gynecologist in a German urology journal shows that awareness of IC is growing among gynecologists worldwide.
Read more.
The ICA store is getting a makeover! Soon, the store will sell only ICA published resources, so order your holiday gifts soon!
In 2010, look online for our new ICA Resource Center with more great resources than ever before to help you live well with IC. We will link you to an expanded list of informative, helpful, and inspiring books, CDs, and DVDs that you can buy with just a few clicks. All of our recommended resources will be carefully reviewed and chosen by the ICA’s healthcare experts, patient leaders, and staff.
Place your order online
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 all upcoming IC-related conferences on the ICA Conference calendar.
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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