In the past, people living with interstitial cystitis, or painful bladder syndrome - had a heavy burden to bear. For years, the condition was ignored and barely studied, and some people felt that they were being told it was all in their head.
It is estimated that 80% or more of the 1-2 million people with interstitial cystitis sufferers are women. In fact, because men have an entirely different genitourinary anatomy, many urologists think that symptoms may be an entirely different syndrome in men.
At last, IC has become a well-recognized urologic disorder with an extremely active advocacy community that has successfully pressed for research and provided support patients throughout the United States suffering from the disorder.
Interstitial cystitis, or IC, is a chronic inflammatory bladder condition. Some urologists have suggested that men diagnosed with “prostatitis." an inflammatory condition of the prostate gland, and other painful urologic conditions, may really have interstitial cystitis.
The exact cause of the inflammation is not known, but researchers are investigating whether autoimmunity, where your own body’s immune system attacks the bladder, plays a role. A histamine-type reaction, which is like an allergic response, may contribute to the inflammatory response. When the bladder’s epithelium (inside lining) is inflamed or irritated, it is believed that the bladder cannot hold as much urine as it normally would. This contributes to a need to urinate frequently, as well as pain and discomfort in the bladder and pelvic aea.
If you are living with intractable interstitial cystitis symptoms, you may want to explore the website that the National Institutes of Health maintains, which lists all trials recruiting volunteers. Many of these studies evaluate new treatments.
SymptomsCommon symptoms specific to the bladder and pelvic area are:
- pain, which becomes more severe as the bladder fills and is relieved upon urination,
- frequent urination,
- and an urgent need to urinate that you may be unable to control.
Diagnosis involves taking a medical history, conducting a physical examination, and urine tests. The goals of the work-up are to rule out urologic infections and other disorders. There has been a seachange in the diagnostic work-up for interstitial cystitis, according to the American Urological Association. Invasive tests, such as cystoscopy with distention of the bladder, are used infrequently. Put simply, the tests often do not alter the diagnosis and they are very uncomfortable.
In its place, urologists may use the Pelvic pain and Urgency Frequency Score, or PUFS, a questionnaire, geared to gaining a comprehensive understanding of your symptoms as you describe them. A Potassium Sensitivity Test shows whether potassium seeps into the bladder lining, causing pain, urgency, and frequency of urination.
Interstitial cystitis may flare up when you eat trigger foods, smoke, or drink alcohol. Citrus fruits, chocolate, tomatoes, and coffee are rich in potassium and particularly irritating. Patients respond differently so your diet may need to be individualized. Urologists sometimes recommend initially trying eliminating some foods that may trigger an exacerbation for a few weeks to see whether symptoms improve. If you want to expand your food choices, you can one-by-one, experiment with different foods that you eliminated. Diet lists that are friendly to patients living with interstitial cystitis can be obtained from advocacy groups listed below.
As yet, there is no cure for interstitial cystitis. Medications are directed towards coating and protecting the bladder surface, reducing an inflammatory or allergic response. A drawback to current medication protocols is that they take between 3-6 months to result in symptom reduction.
Oral pentosan polysulfate is one of two drugs approved by the Food and Drug Administration for the treatment of IC.
Dimethyl sulfoxide (DMSO) works as an anti-inflammatory, pain reducer. Other medications are used off label, including those with antihistamine effects.
Other commonly used medications include the tricylic antidepressant amitriptylline, which is believed to have antihistamine and pain-control properties, hydroxyzine, an antihistamine, heparin, and nonsteroidal anti-inflammatory drugs.
Hanno PM, Chapple CR, Cardozo LD. Bladder pain syndrome/interstitial cystitis:a sense of urgency.World J Urol 2009 Epub ahead of print.
Moldwin RM, Evans RJ, Stanford EJ, et al.. Rational approaches to the treatment of patients with interstitial cystitis. Urology. 2007;69:73-81.
For a list of ongoing clinical trials on interstitial cystitis, see the National Insititues of Health clinical trials website.