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 syndrome characterized by chronic urinary urgency (feeling the need to urinate immediately) and frequency (frequent urination), usually with suprapubic discomfort or pressure and usually 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.

There has been controversy in the medical literature regarding the definition of interstitial cystitis and use of the term. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the U.S. National Institutes of Health (NIH) established a set of diagnostic criteria for inclusion in research studies relating to interstitial cystitis and its causes that were used for research purposes until 2002. However, the NIDDK criteria were felt to be overly restrictive for diagnostic use, and in 2002, new criteria were proposed for the diagnosis of painful bladder disorders, including the condition referred to as painful bladder syndrome (PBS) by the International Continence Society (ICS). These criteria felt that the term PBS was preferable and that the term IC should be restricted to use in those patients having typical findings observed upon cystoscopy and biopsy of the bladder tissues.

The ICS criteria state the following:

  • Painful bladder syndrome is the complaint of suprapubic pain related to bladder filling, accompanied by other symptoms such as increased daytime and night-time frequency, in the absence of proven urinary infection or other obvious pathology...The ICS believes this to be a preferable term to "interstitial cystitis." Interstitial cystitis is a specific diagnosis and requires confirmation by typical clinical cystoscopic and possibly histological features.

In 2006, another set of diagnostic criteria were proposed by the European Society for the Study of IC/BPS, suggesting the use of the term bladder pain syndrome (BPS):

  • A diagnosis of bladder pain syndrome (BPS) is made of the basis of the symptom of chronic pain related to the urinary bladder accompanied by at least one other urinary symptom such as daytime and nighttime frequency, and exclusion of confusable diseases as the cause of the symptoms, and cystoscopy with hydrodistension and biopsy if indicated (to document the type of BPS/IC).

Until agreement is reached about terminology and definition of the condition, it will be difficult to determine the true prevalence of PBS/IC. Estimates of the number of affected people 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 the lack of agreement about the diagnosis of PBS/IC, 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. PBS/IC 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 PBS/IC.

Some associations with other medical conditions are seen with PBS/IC. Women with PBS/IC are more likely to have had frequent urinary tract infections (UTIs) and to have had previous gynecologic surgery than women without PBS/IC. Certain chronic illnesses have been described as occurring more frequently in people with PBS/IC than in the general population. Examples of these associated conditions are inflammatory bowel disease, systemic lupus erythematosus, irritable bowel syndrome (IBS), vulvodynia (chronic discomfort in the vulvar area), allergies, endometriosis, and fibromyalgia. While each of these conditions has been described in at least some studies to be more common in people with PBS/IC than in the general population, there is no evidence that any of these conditions is the cause of PBS/IC.

Observations from cystoscopy (visual examination of the inside of the bladder via a probe) studies have found that two patterns exist for IC, ulcerative and nonulcerative, depending upon the presence or absence of ulcerations 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 PBS/IC 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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