Interstitial cystitis

Originally Published: May 3, 2002 - Last Updated / Reviewed On: May 26, 2006
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Hi Alice,

For about three years now it burns every time I urinate. It hurts before and after. I have been to the doctors and I do not have an STD or UTI. It has got to the point that it wakes me up out of a dead sleep. It feels like a knife is stabbing me, and I can't sit, lay down, or move at all. I was wondering if you knew what else it could be. Thanks.

Dear Reader,

While it is certainly frustrating to continue to visit doctors and still have no diagnosis or treatment plan that can ease, or eliminate, the pain you're experiencing, persistence will pay off. Make an appointment to see a urologist — a doctor who specializes in the urinary tract — who may be able to help you determine what is causing your discomfort.

What you describe may be a chronic inflammatory condition of the bladder called interstitial cystitis (IC). Symptoms of IC vary from case to case, but often include mild discomfort, pressure, tenderness, or even intense pain in the bladder and surrounding area. People, usually women, who have IC may also experience a frequent and urgent need to urinate. A relatively newly recognized disorder, IC has been a diagnosis for only about 20 years now, and is difficult to diagnose correctly. Because symptoms vary so widely, many scientists believe IC is a syndrome rather than a specific disease. Most scientists also do not believe that interstitial cystitis is caused by bacteria, and there are many theories on what does cause IC. We do know, however, that IC is neither a psychosomatic nor a stress-related disorder.

In this case, it is important to see a urologist, who would have to diagnose IC through a process of ruling out other possibilities. An extensive list of other, similar disorders that need to be checked off the list before a diagnosis of IC can be made include bacterial cystitis (urinary tract infection), bladder cancer, kidney problems and kidney stones, tuberculosis, vaginal infections, sexually transmitted infections (STIs), endometriosis, radiation cystitis, and neurological disorders. A urologist may also perform a cystoscopy (an examination of the bladder with a tube) to check for hemorrhages on the bladder wall. These occur in about 95 percent of patients with IC.

On top of being frustrated by the discomfort and pain associated with the disorder, those with IC also have to deal with the frustration of misdiagnoses and insufficient or ineffective treatment. The U.S. Food and Drug Administration (FDA) reports that a patient visits five doctors over three to five years before being diagnosed with IC. But this makes it all the more important to visit a urologist or a clinician who specializes in treating IC. You've already begun the process of elimination by being tested for STIs and a urinary tract infection. Even if you do not have IC, a specialist with experience in this area may be able to pinpoint what is causing your symptoms, to find the proper treatment. In addition, support groups, in person or on-line, can also be useful.


May 26, 2006


Dear Alice,

My sister suffers from this (IC) disorder and it has been absolute hell for her. Just as you said she visited numerous doctors over the course of almost two years only to get...

Dear Alice,

My sister suffers from this (IC) disorder and it has been absolute hell for her. Just as you said she visited numerous doctors over the course of almost two years only to get confirmation from a urologist. As one can imagine it is debilitating for her as it was also hard for me and my family...but we stick by her even though her pain causes irrationality and irritability—it is hard to be around her basically. She is managing it and regards a pain free day as a day to revel in; she appreciates life more when she is not in pain. IC is commonly misdiagnosed and originally my sister's urologist didn't diagnose her with it (even though he knew that is what caused her pain) because he knows it is a lifelong condition full of pain. The upside to it is that my sister was persistent in finding out what the problem was and didn't care that the doctors thought she was a hypochondriac. My sister actually informed a DOCTOR (a visit unrelated to IC) about what to prescribe to patients who suffer this disorder - because he either didn't have any experience with it or wanted to know what worked for her. I feel that more people should be aware of this disorder so that more research can be done. Right now that is the problem, not many know about it so it is continuously misdiagnosed therefore statistically showing that it is uncommon, which isn't true! If more were properly diagnosed then this country would see the overwhelming need to research IC -especially considering they will live the rest of their lives with urinary pain. Imagine a bladder infection x10- you have IC! Fortunately she is doing everything she can to help the cause by participating in a study at Johns Hopkins University. Thanks Alice for even recognizing what IC is, I know this QA is older but you saved that inquirer a lot of time and money by pointing out the possibility of IC.

—Caring Sister