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"A razor in my bladder"
Image Interstitial cystitis causes excruciating pain -- but some doctors deny it even exists.

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By Nancy Evans

April 26, 1999 | Orthopedic surgeon Vicki Ratner was 32 and a third-year medical student when the symptoms appeared: It felt like someone was holding a hot poker inside her bladder. It felt like acid on an open wound. It felt, she says, "like razor blades inside my bladder." She had a constant urge to urinate. At first she thought it was a urinary tract infection, also known as cystitis. She'd had them and knew that antibiotics brought fast relief. But this time, the urine cultures came back negative and the antibiotics didn't help. More tests showed nothing.

Persistent pain drove Ratner to see 10 urologists, two allergists and two infectious disease specialists. She was sent home with a diagnosis of stress, a referral to a psychiatrist and a recommendation that she quit medical school and settle down to a more quiet life. Instead, she went to the library, where she read an article about a disease she had never heard of that, according to a recent report in the Journal of Urology, affects 700,000 Americans: interstitial cystitis (IC). Causes and treatment unknown. Symptoms well known: urgency and frequency of urination, pain during urination and, in some cases, pain during and after sexual intercourse.

Journal article in hand, Ratner returned to her original urologist and asked for the necessary diagnostic test. After much argument, he performed the test and, sure enough, Ratner had IC. Once diagnosed, she learned how little is known about treatment and how little interest there was in learning more. "I spent the last two years of medical school in intense, unremitting pain and isolation. I thought I was the only one in the world with this disease."

After contacting the National Institutes of Health, the Centers for Disease Control and the American Urologic Association with no success, she went to the media -- and things started to happen. She got a Manhattan news program to air a three-minute piece on IC, which prompted 3,000 letters -- mostly from women. "They all described the same symptoms, the same misdiagnosis and mistreatment by doctors," says Ratner.

In 1984 some of those patients joined Ratner to form the Interstitial Cystitis Association, a nonprofit patient advocacy group. Later that year, Ratner appeared on "Good Morning America" and 10,000 letters came in to the ICA. In the 15 years since, ICA has organized support networks, testified in Congress and funded pilot research projects. It publishes newsletters for patients and physicians and has co-sponsored (with the NIH) a biennial reseach conference.

It's helping, but not fast enough for those who are suffering. Until 1987 not one penny of federal research money had been spent on IC. By 1990, $11 million was earmarked for IC and related research via NIH, but Ratner thinks that because more than 90 percent of IC patients are women and it's considered a rare disorder of post-menopausal women, it's not a priority.

"It's not rare," says Ratner, and in fact more than 25 percent of patients are under age 30. And the numbers -- at least 700,000 Americans (compared to 20,000 with hemophilia and 30,000 with cystic fibrosis) -- warrant more attention.

 Next page | "Sometimes I wish I was dead"



 

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