Interstitial Cystitis - Describe Your Experience

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What is interstitial cystitis (IC)?

Interstitial cystitis (IC) is a term that has been used to refer to a clinical constellation of symptoms characterized by chronic urinary urgency (feeling the need to urinate immediately) and frequency (frequent urination), usually with suprapubic discomfort or pressure that usually is relieved by urinating. The symptoms of this condition vary among individuals and may even vary with time in the same individual. The term cystitis refers to any inflammation of the bladder. In contrast to bacterial cystitis that results from an infection in the bladder, a type of urinary tract infection (UTI), no infectious organism has been identified in people with interstitial cystitis. In 2006, the European Society for the Study of IC/BPS suggested the use of the term bladder pain syndrome (BPS) for these patients.

The American Urological Association (AUA) guidelines use the following definition for IC/BPS:

IC/BPS is an unpleasant sensation (pain, pressure, and discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than six weeks duration, in the absence of infection or other identifiable causes.

Estimates of the number of people affected by IC/PBS vary widely and are dependent upon the criteria used for diagnosis. Many experts believe that about 3.3 million women in the U.S. (over age 18) may be affected, as well as 1.6 million men.

Despite a lack of consistency about the diagnosis of IC/PBS, studies agree that the majority of those affected are women. While individuals of any age can be affected, including children, the average age of onset is around 40. IC/PBS has not been considered to be a hereditary disorder, but multiple cases have occurred among some families, prompting ongoing investigation of the possible role of hereditary factors in the development of IC/PBS.

Observations from cystoscopy (visual examination of the inside of the bladder via a camera) have found that two patterns exist for IC, ulcerative and nonulcerative, depending upon the presence or absence of ulcerations, breaks in the bladder lining. Star-shaped ulcerations in the bladder wall are known as Hunner's ulcers. These are found in less than 10% of cases of IC/PBS in the U.S.

Over time, interstitial cystitis can cause physical damage to the bladder wall. Scarring and stiffening of the bladder wall may occur as a result of the chronic inflammation, leading to a decrease in bladder capacity. Glomerulations (areas of pinpoint bleeding) and petechial hemorrhage may be seen on the bladder wall.

Return to Interstitial Cystitis (IC)

See what others are saying

Comment from: Taylor, 19-24 Female (Patient) Published: February 25

I went to the doctor and she told me that I may have interstitial cystitis (IC). She doesn't know because she couldn't run a culture. I've been dealing with issues for 2 years now. I will get symptoms that are close to a yeast infection and then sometimes I will feel like I'm getting a urinary tract infection (UTI). I also have frequent pelvic pain and also a lot of lower back pain. I was having discharge but the doctor told me that my cervix was very red and inflamed and that there were a lot of white blood cells and discharge. I was given pills for that and I was also given some UTI medication and fluconazole until I can get to a urologist. I'm very frustrated and I can't seem to get an answer from anyone.

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Comment from: Monica, 25-34 Female (Patient) Published: March 25

I was diagnosed with interstitial cystitis (IC) when I was about 17 or 18. I am now 24 going on 25. I took tramadol and had the procedure done by a urologist where they stretched my bladder, along with a strict diet. All those things helped but my doctor said the underlying cause was endometriosis. Once that was under control, my IC symptoms would improve. After going to several gynecologists and being misdiagnosed for years, I found out I never had endometriosis, but pelvic congestion syndrome. I had surgery about 3 and a half years ago for that and have been much better since. Initially, my IC symptoms went away for the last couple of years until now. A couple months ago, I found out I was pre-diabetic (but I have the symptoms of a full blown diabetic) and my blood sugar levels hadn't really been under control. With diet, I think for the most part my blood sugar is under control but it may not be. My primary doctor refuses to put me on medicine for my blood sugar since I'm technically not a full blown type 2 diabetic. I think that this is the culprit of the flare up possibly. I will be talking to my primary care physician and scheduling an appointment soon to meet with my urologist.

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