Frequently Asked Questions

What is IC/PBS?

Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate (urgency), a frequent need to urinate (frequency), or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women's symptoms often get worse during menstruation. They may sometimes experience pain with vaginal intercourse.

Because IC varies so much in symptoms and severity, most researchers believe that it is not one, but several diseases. In recent years, scientists have started to use the term painful bladder syndrome (PBS) to describe cases with painful urinary symptoms that may not meet the strictest definition of IC. The term IC / PBS includes all cases of urinary pain that can't be attributed to other causes, such as infection or urinary stones. The term interstitial cystitis, or IC, is used alone when describing cases that meet all of the IC criteria established by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

In IC / PBS, the bladder wall may be irritated and become scarred or stiff. Glomerulations (pinpoint bleeding) often appear on the bladder wall. Hunner's ulcers are present in 10 percent of patients with IC. Some people with IC / PBS find that their bladders cannot hold much urine, which increases the frequency of urination. Frequency, however, is not always specifically related to bladder size; many people with severe frequency have normal bladder capacity. People with severe cases of IC / PBS may urinate as many as 60 times a day, including frequent nighttime urination (nocturia). IC / PBS is far more common in women than in men. Of the estimated 1 million Americans with IC, up to 90 percent are women.

What causes IC?

Some of the symptoms of IC resemble those of bacterial infection, but medical tests reveal no organisms in the urine of patients with IC. Furthermore, patients with IC do not respond to antibiotic therapy. For many diseases, clues to causes have been revealed by studies that determine risk factors for the disease.  Researchers are working to understand the causes of IC and to find effective treatments.  The University of Maryland School of Medicine and the National Institutes of Health are performing a study to identify risk factors for IC.  This study is entitled Events Preceding Interstitial Cystitis (EPIC). 

Researchers are beginning to explore the possibility that heredity may play a part in some forms of IC.  Because IC tends to run in some families, there may be a genetic susceptibility to the disease.  The University of Maryland School of Medicine and the National Institutes of Health are performing a study to identify the genes linked to IC in such families.  This is the Maryland Genetics of Interstitial Cystitis (MaGIC) Study.  Please click here for more information.

In recent years, researchers at the University of Maryland have isolated a substance found almost exclusively in the urine of people with interstitial cystitis. They have named the substance antiproliferative factor, or APF, because it appears to block the normal growth of the cells that line the inside wall of the bladder. Researchers anticipate that learning more about APF will lead to a greater understanding of the causes of IC and to possible treatments.  Both the EPIC and MaGIC studies will be studying APF values in hopes of learning more about IC.

How is IC / PBS diagnosed?

Because symptoms are similar to those of other disorders of the urinary bladder and because there is no definitive test to identify IC / PBS, doctors must rule out other treatable conditions before considering a diagnosis of IC / PBS. The most common of these diseases in both genders are urinary tract infections and bladder cancer. IC / PBS is not associated with any increased risk in developing cancer. In men, common diseases include chronic prostatitis or chronic pelvic pain syndrome.

The diagnosis of IC / PBS in the general population is based on presence of pain related to the bladder, usually accompanied by frequency and urgency, and absence of other diseases that could cause the symptoms.  Diagnostic tests that help in ruling out other diseases include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall, distention of the bladder under anesthesia, urine cytology, and laboratory examination of prostate secretions.

What are the treatments for IC / PBS?

Scientists have not yet found a cure for IC / PBS, nor can they predict who will respond best to which treatment. Symptoms may disappear without explanation or coincide with an event such as a change in diet or treatment. Even when symptoms disappear, they may return after days, weeks, months, or years. Scientists do not know why.

Because the causes of IC / PBS are unknown, current treatments are aimed at relieving symptoms. Many people are helped for variable periods by one or a combination of the treatments. As researchers learn more about IC / PBS, the list of potential treatments will change, so patients should discuss their options with a doctor.

Hope Through Research

Although answers may seem slow in coming, researchers are working to solve the painful riddle of IC / PBS. Some scientists receive funds from the Federal Government to help support their research, while others receive support from their employing institution, drug pharmaceutical or device companies, or patient support associations.

Here at the University of Maryland IC Center, we are committed to understanding the cause of IC through our EPIC and MaGIC research studies and are working with the NIH to do this.  If you think you may be eligible for one of our studies, please contact us. 

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