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Help for Jill I belong to an organization called the Interstitial Cystitis Association because, in addition to CMT, I suffer with a disabling inflammatory bladder condition. I am in the bathroom up to 40 times per day. This is a very long story and I won't go into it here but very often people with this bladder condition also develop vaginal, urethral problems with symptoms quite similar to Jill's. The Interstitial Cystitis Association is now working closely with the Vulvar Pain Foundation and the Vulvar Pain Network to explore this problem. Jill needs to be aware that she should be seen not only by a gynecologist but also by a urologist (a doctor who specializes in the treatment of kidney and bladder disorders). She might have an undiagnosed bladder condition underlying her vulvar pain. I think the two doctors who responded to Jill need a bit of education in this area. They both were stuck back in the "it's a vaginal infection" territory...which it may or may not be. It may be an inflammatory vulvar condition. It would be personally interesting for me to see how many CMT women have bladder disorders such as interstitial cystitis. IC is often misdiagnosed as being a "bladder infection" (which it isn't) or just the hysterical ravings of an uptight woman in need of psychiatric care. It is a serious, painful, disabling bladder problem, sometimes necessitating bladder removal. The important thing for Jill is to belong to a support network and link herself with doctors who are doing active research in the field. Get away from doctors who are behind in their research and treating it like another case of vaginitis or suggesting psychologists. She needs state of the art care and I hope she can get it. The Interstitial Cystitis Association is a nationwide support group; we have received media coverage in every area. I, myself, appeared on the Today Show a few years ago with the group. So we are "big time" - not some obscure little bladder group. We have gotten National Institutes of Health (NIH) here in the U.S. to do the first ever bladder studies for women even though this condition has been around for 100 years in medical literature. Perhaps this bladder/vulvar pain thing can open up a new dialogue for CMT women. There has been some speculation in my case that my bladder problems might be neurologic in origin, and the ICA is definitely interested in any angle to shed light on women's bladder problems. Linda here - We also heard from another member, Gail Tchanz, who said she was the woman written up in Good Housekeeping some time ago. "I know the hell I went through," she said. "They couldn't figure it out. The pain was so bad I'd scream if my husband touched me. I finally found a woman gynecologist and all she had to do was touch a Q-tip to the crucial spots and I'd go through the roof, it hurt so bad. All the male doctors couldn't figure it out. I had vastibular adenitis - a gland on the outside of the vulva that is for lubrication becomes infected and it can cause severe pain throughout the area." Here are the addresses for the groups mentioned above: The Interstitial Cystitis Assoc.
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