How to spot cystitis
Oct. 16, 2000 -- More than fifteen years ago, when she was a medical student and in her 20s, Vicki Ratner, MD, learned a valuable lesson about being a patient -- and about trusting her instincts. Ratner spent several frustrating months consulting one physician after another, 14 in all, trying to find out what was causing her constant urge to urinate and debilitating bladder pain. Each doctor gave her basically the same message: There's nothing wrong with your bladder; the pain is in your head. "Ten of the doctors also told me that if I couldn't hack it in medical school, I should quit," says Ratner, who is now an orthopedic surgeon in Los Gatos, Calif.
Ratner knew that her pain was no figment, and instead of dropping out of school, she did some research. She went to her school's library, did a medical literature search, and quickly came upon a description of a disorder with symptoms that were identical to hers. Armed with a name for her pain, she paid a visit to one of the physicians who had earlier dismissed her. "I told him I had interstitial cystitis [IC]," says Ratner, "and he told me that this was impossible -- that IC was a rare disorder that only affected postmenopausal women."
As it turns out, Ratner was right. A few months later, she was able to secure an interview to discuss her experience on Good Morning America. "Within a week I got 10,000 letters from women of all ages who thanked me for finally giving them an answer," Ratner says. "Most of these women also told me that their doctors had said that they were crazy."
While IC is fairly uncommon -- an estimated 700,000 Americans, mostly women, have the condition, according to a study in the February 1999 issue of the Journal of Urology -- many physicians also believe that IC is drastically underdiagnosed. However, that lack of recognition may be changing. Thanks to the efforts of IC sufferers like Vicki Ratner, the condition has been gaining more attention. Physicians who once dismissed the disorder are becoming more aware that IC should be taken -- and treated -- seriously.
Not a UTI
Interstitial cystitis is usually mistaken for a urinary tract infection (UTI) -- exactly what Ratner initially thought she had -- because many of the symptoms, including the frequent need to urinate and burning sensation with urination, are similar. But UTIs are normally easily diagnosed with a simple urine test that detects the bacteria that cause the infection. Urinary tract infections are also usually easy to treat with antibiotics, and in some cases, home remedies such as drinking cranberry juice may even help prevent them. Interstitial cystitis, however, doesn't respond to antibiotics, often flares up just before menstruation, and can disappear for weeks, months, or even years at a time, only to reappear with stress.
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IC can also be marked by pelvic pressure, tenderness, and sometimes severe pain. Indeed, the pain can be so intense and the need to urinate so frequent (for example, just riding in a car or sitting in a movie theater may be intolerable), that many IC sufferers can't hold down a job. In addition, they may have difficulty maintaining intimate relationships because sex is so uncomfortable.
"I felt like a prisoner in my own body," says Terry-Jo Myers, an IC sufferer and a professional golfer who's played for 15 years on the Ladies Pro Golf Association tour. "I felt like I had to empty my bladder literally every two minutes." And the pain was unbearable. "It felt like I had paper cuts on my insides," she says. Like Ratner, Myers was in her early 20s when she first felt the symptoms of a bladder infection. When it became clear that she didn't have a routine UTI, Myers saw a urologist who used ultrasound to look at her bladder. She says that he knew immediately, from the visible scarring of her bladder (IC leaves telltale marks on some patients), what she had. "I was told 'You have interstitial cystitis. We don't know what causes it, there's little research about it, and there's no cure. You're going to have to live with it.' "
In fact, the cause of IC remains unknown, although there are several theories. One is that a bladder infection stimulates the patient's immune system to attack the bladder tissues, says Ratner. Another notion is that IC is caused by bacteria in the cells lining the bladder that are not detectable through current urine tests. It doesn't seem to run in families and thus far no genetic link has been identified. "One of the biggest problems with diagnosing IC is that there are so many different symptoms, and there's not just one treatment that works," says Robert Moldwin, MD, an assistant professor of urology at Albert Einstein School of Medicine, and director of the Interstitial Cystitis Treatment Center at Long Island Jewish Medical Center in New Hyde Park, N.Y. "And right now, there is no cure for IC," he adds, "but with the right diagnosis, life can be made more comfortable."
No Cure, but Treatments Abound
There are several treatment options that relieve the discomfort of IC, says Moldwin. Terry-Jo Myers takes a drug called Elmiron, which researchers believe repairs microscopic defects that are present in the bladder. Ratner also uses low doses of a narcotic analgesic to manage her pain. Some patients use antihistamines to reduce inflammation in the bladder, and others ultimately elect for surgical bladder reconstruction or even removal (though surgery is considered a last resort, when all other treatments have failed).
If surgery is the most drastic treatment, eating a bland diet might be the least. And such a diet makeover is what ultimately relieved the symptoms of Tula Karras, now a journalist in San Francisco. She was about to graduate from college when her pelvic pain first appeared. "Of course, I thought it was a bladder infection, but the cultures came back negative," she says. "Then I started to have low back pain. I thought it was my kidneys, so I saw a urologist." She submitted to exploratory bladder surgery and, like Myers, once her doctor saw her bladder, he knew what the problem was. "The good news was that it wasn't cancer. The bad news was that I was 23 and had a disorder that no one really knew much about," she says.
Karras' urologist first prescribed a monthly "bladder wash," in which a chemical called dimethyl sulfoxide (DMSO) was administered into the bladder through a catheter. "The treatment was traumatic," she says, "and it didn't help much." Karras joined a local IC support group and soon discovered that many IC sufferers had had success treating the disorder by eating a bland diet. Even though there's no scientific evidence linking diet to IC, many patients find that eliminating alcohol, citrus, chocolate, coffee, and highly acidic foods, like tomatoes, eases their symptoms. Fortunately, Karras was one of the lucky ones, because within a few months of eating the restricted diet, her symptoms subsided.
Now, at 32, Karras says she's been consistently symptom-free for years. "I notice that when I'm really stressed, or I eat too much of the wrong thing, I start to feel some symptoms, but I just go back to the diet and I'm OK."
Since Ratner, Myers, and Karras were first diagnosed with IC, a few things have changed. Physicians, both gynecologists and urologists, are more aware of the condition and patients are able to get a quicker diagnosis.
This awareness is due in large part to the efforts of Vicki Ratner. Shortly after finding out what was causing her problem, Ratner founded the Interstitial Cystitis Association (ICA), which is now the primary source of information for both patients and physicians about the disorder. Myers has joined forces with Ratner and serves as the primary spokeswoman for the American Foundation of Urologic Diseases (AFUD) public awareness campaign, "On Course for Better Health." "If I'd had a place like the ICA to turn to when I was first diagnosed, it would have made my life so much easier, so much sooner," she says.
Dana Sullivan is a freelance writer based in Reno, Nev.
• On Course For Better Health
• Interstitial Cystitis Network
• Interstitial Cystitis Association
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