SUNDAY, April 6, 2003 (HealthDayNews) -- It often begins as a urinary tract infection with all-too-familiar symptoms -- burning and pain while urinating, a constant urge to "go" up to 30 times a day, and pelvic pain as soon as your bladder becomes full.
But unlike a common urinary tract infection (UTI), which usually responds quickly to a round of antibiotics, for some women the symptoms never really go away -- or return shortly after they subside.
The root of the problem may not be a UTI at all, but instead a condition known as interstitial cystitis, a baffling urinary tract disorder that many doctors can easily miss.
"I've seen patients who had symptoms that went undiagnosed for years," says Dr. Victor Nitti, vice chairman of the department of urology at the New York University School of Medicine, and a specialist in treating interstitial cystitis.
"They went from one doctor to another, believing they had a chronic urinary tract infection, or just simply trying to find out what was wrong, and they never could find the answer," Nitti says.
Interstitial cystitis (IC) is a chronic inflammatory condition that affects mostly women -- some 1 million in the United States alone. Because symptoms include not only pain while urinating but also chronic pelvic and bladder pain, IC can interfere with everything from sitting comfortably in a chair to having intimate relations.
Because problems often begin with a urinary tract infection that appears to get better for a short while, many women believe they have been hit with a second infection when symptoms return. When they don't respond to treatment, or when symptoms continue to wax and wane over a period of time, the diagnosis is often "chronic UTI."
But if a woman isn't diagnosed correctly, she can quickly get caught up in a landslide of ineffective treatments, from muscle relaxers to tranquilizers and painkillers -- and still not know what's really wrong, Nitti says.
One reason for the diagnostic snafu, experts say, is the lack of a standard, clinical definition of interstitial cystitis.
"In the past, many clinicians have relied on the so-called NIDDK research definition, which was designed to facilitate clinical and basic research studies on the disease," says Dr. Phillip Hanno, co-chairman of the Interstitial Cystitis Association. But that definition is much too restrictive to be useful for patients, and has resulted in many women remaining undiagnosed and untreated, he adds.
This problem may soon change, however. Later this month, an international team of IC experts will meet in Japan to develop new and hopefully more precise ways of classifying and diagnosing the condition. Then they will share their recommendations at a National Institutes of Health symposium on IC scheduled for later this year.
Hanno believes the new definition will be important to patients as well as physicians, because "it can help ensure that those who would benefit most from diagnosis and treatment will get it, while those who would not benefit will not be incorrectly diagnosed."
While no one is certain what causes IC -- or what puts a woman at increased risk -- the newest theories link the problem to environmental allergies, or, more likely, food sensitivities, particularly foods high in acid.
IC expert Dr. Michael P. O'Leary says foods such as tomatoes, chocolate, lemons and other citrus fruits and some spices can irritate a sensitive urinary tract, and eventually might cause the inflammation that is the hallmark of the disease.
"Trying to discern what foods cause problems is very difficult. Some folks definitely think certain things -- mostly acid foods -- cause problems, but this is very variable," says O'Leary, an associate professor of surgery at Harvard Medical School.
While finding the cause of IC may be a long time coming, the good news is that once the condition is diagnosed, there are treatments that can help.
For some women, relief is as close as an anti-inflammatory medication or even an antihistamine -- drugs commonly used to treat allergies. Alone or in combination with dietary modifications, these drugs can often reduce symptoms dramatically, Nitti says.
When they don't, more potent medications can help, including drugs known as anticholinergics -- medicines that work directly on the nerve endings in the urinary tract, O'Leary says.
In rare instances, there are also a number of surgical procedures that can help.
But most important, say experts, is to get the correct diagnosis as early as possible. "Only then can you begin to experiment with the treatments that at least have the potential to help you," Nitti says.
If you've been diagnosed with a urinary tract infection that repeatedly fails to respond to antibiotics, if you're plagued with continued bouts of UTI symptoms, or if you experience symptoms of a UTI but urine tests fail to reveal any bacteria, Nitti says consider a consultation with a urogynecologist -- or any doctor who specializes in the diagnosis and treatment of IC.
More information
To learn more about interstitial cystitis, visit The Interstitial Cystitis Association. Or check with the National Kidney and Urologic Diseases Information Clearinghouse.
