Q: Would you please write about interstitial cystitis. It's such a painful disease, and nothing that 12 doctors have offered has helped.
-- B.D., Washington, N.J.
A: I'm sorry to hear that you are having so much pain and that you've gone to so many doctors without success. I think that sometimes getting a second and, more rarely, a third opinion can be helpful. But rather than simply going to more and more doctors, spend more time with one you trust.
Interstitial cystitis is a painful, chronic inflammation of the urinary bladder. It typically affects middle-aged women. It's now estimated that more than a million women in North America have interstitial cystitis. Recent studies have found that more than 40 percent of women with undiagnosed pelvic pain may have interstitial cystitis.
It is different from other forms of cystitis, which are inflammations of the bladder caused by infections. The cause of the inflammation is unknown. No infectious organisms are found in the urine of people with interstitial cystitis. A recent study of women with the condition found a chemical in their urine that is toxic to the cells that line the bladder.
The primary symptom of this condition is pain in the pelvis, especially when the bladder is full. The pain is often diminished or relieved by voiding. Urinary frequency, especially at night, and painful urination may also be seen. The urine often contains pus and blood.
Interstitial cystitis is diagnosed using urinalysis to detect inflammation and urine culture to rule out infections. A new test, which looks at the sensitivity of the bladder to potassium, may help make the diagnosis.
Diagnosis is confirmed by cystoscopy (looking at the bladder wall through a fiber optic scope inserted through the bladder opening) after distending the bladder with fluid.
There is no cure for interstitial cystitis, and treatment is aimed at relieving symptoms. Fortunately, almost half the people with this condition will see spontaneous remission even without treatment.
Many different "treatments" are available, which tells us that no single treatment has been found to be effective for everyone. Diet modification has been shown to help some women.
The mainstay of treatment has been direct instillation of dimethyl sulfoxide (DMSO) directly into the bladder. Direct instillation of BCG vaccine has also been tried, with mixed results. Distention of the bladder with fluids may also be effective.
Pentosan polysulfate (Elmiron) is now often recommended to relieve bladder pain and discomfort caused by interstitial cystitis. It is a chemical compound similar in structure to the anticoagulant heparin, but the precise mechanism of action is unknown.
A recent study showed that using a combination of the antidepressant doxepin and the anti-inflammatory drug piroxicam was partially to very effective in about 85 percent of patients.
I suggest that you select a urologist, preferable one of the doctors you have already seen and one that you feel communicates well with you. Please use this information in that discussion to consider the options available to control your symptoms.