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What is Interstitial Cystitis/Painful Bladder Syndrome?

Interstitial cystitis/Painful Bladder Syndrome (IC/PBS) is a chronic inflammatory condition of the bladder wall. The etilogy is unknown and there are no uniformly effective treatments. Symptoms are similar to an acute urinary tract infection, and include pelvic pain, urinary urgency and urinary frequency. However, urine cultures are negative and patients do not respond to antibiotics. An estimated one million people in the United States suffer from IC/PBS -- 90 percent of whom are women -- a conservative estimate because many people with IC/PBS are either misdiagnosed or go undiagnosed. The incidence of IC/PBS is similar to that of Parkinson's disease, yet few people are aware of the condition. IC/PBS may be associated with other conditions such as vulvodynia, fibromyalgia, and irritable bowel syndrome.

Epidemiological studies reveal that it takes, on average, five to seven years to obtain an accurate diagnosis of IC/PBS and that IC/PBS patients score worse on quality of life measures than patients with end stage renal disease on dialysis. Without adequate intervention, patients can experience severe pelvic pain and the need to void as often as every 10 to 15 minutes both day and night. Some patients are housebound, and many are unable to work or care for their families. Intractable pain has resulted in suicides each year because patients are left to live with severe, debilitating pain and have nowhere to turn for help.
DIAGNOSIS: IC/PBS is frequently misdiagnosed as an acute urinary tract infection (cystitis), a disorder which can be successfully treated with antibiotics. A cystoscopy with hydrodistention under general anesthesia is required to make a diagnosis of interstitial cystitis or painful bladder syndrome. The bladder is distended to check for pinpoint hemorrhages on the bladder wall that are the hallmark of IC/PBS. A number of other diseases must be ruled out, such as bladder infection, bladder cancer, sexually transmitted diseases, neurological disorders, kidney disease, and vaginal infections.

The above text is provided with the permission of the ICA.


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