Interstitial Cystitis / Painful Bladder Syndrome
Are there any special concerns?
There is no evidence that IC / PBS increases the risk of bladder cancer.
Researchers have little information about pregnancy and IC / PBS but believe that the disorder does not affect fertility or the health of the fetus. Some women find that their IC / PBS goes into remission during pregnancy, while others experience a worsening of their symptoms.
The emotional support of family, friends, and other people with IC / PBS is very important in helping patients cope. Studies have found that patients who learn about the disorder and become involved in their own care do better than patients who do not. See the Interstitial Cystitis Association of America's website under "Support Groups" to find a group near you.
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.
NIDDK's investment in scientifically meritorious IC / PBS research across the country has grown considerably since 1987. The Institute now supports research that is looking at various aspects of IC / PBS, such as how the components of urine may injure the bladder and what role organisms identified by nonstandard methods may have in causing IC / PBS. In addition to funding research, NIDDK sponsors scientific workshops where investigators share the results of their studies and discuss future areas for investigation.
Clinical Research Network
The Interstitial Cystitis Clinical Research Network (ICCRN) is a product of two NIDDK programs: the Interstitial Cystitis Database (ICDB) Study and the Interstitial Cystitis Clinical Trials Group (ICCTG). Established in 1991, the ICDB was a five-year prospective cohort study of more than 600 men and women with symptoms of urinary urgency, frequency, and pelvic pain. The study described the longitudinal changes of urinary symptoms, the impact of IC on quality of life, treatment patterns, and the relationship between bladder biopsy findings and patient symptoms. The ICCTG was established in 1996 as a followup to the ICDB study. The clinical trials group developed two randomized, controlled clinical trials of promising therapies, one using oral therapies-pentosan polysulfate sodium (Elmiron) and hydroxyzine hydrochloride (Atarax)- and the other administering intravesical treatment using Bacillus Calmette-GuÃ©rin (BCG). BCG is a vaccine for tuberculosis that stimulates the immune system and may have an effect on the bladder. The ICCTG also developed and conducted ancillary studies of various biomarkers such as heparin-binding-growth-factor-like-growth-factor (HB-EGF) and anti-proliferative factor (APF).
In 2003, the ICCTG became the Interstitial Cystitis Clinical Research Network (ICCRN), which is conducting additional clinical trials, either sequentially or concurrently, over a second five-year period. Ancillary studies will be developed and conducted in conjunction with the trials. One of these trials is studying the effectiveness of amitriptyline (Elavil) in treating painful bladder syndrome, which includes IC. Amitriptyline has FDA approval for the treatment of depression, but researchers believe the drug may work to block nerve signals that trigger pain in the bladder and may also decrease muscle spasms in the bladder, helping to cut both pain and frequent urination. Participants in the trial will be randomly assigned to take up to 75 milligrams of amitriptyline or a placebo each day for 14 to 26 weeks.