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: Bitty71822, 45-54 Female (Patient) Published: March 11

I am 51 years old and have been diagnosed with interstitial cystitis for 20 years now. It is awful. It is so painful, yet the doctors do not want to prescribe pain medicine. I don't know how much longer I can live with this condition. I don't smoke, drink alcohol, or have sex yet I still have flare ups. When I do, it is the worst pain I've had in my life. No doctor seems to understand it. I feel helpless.

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Comment from: Pain in Okla, 35-44 Female (Patient) Published: June 09

When I was first diagnosed with interstitial cystitis (IC) I was 22. It took seeing many doctors and several misdiagnoses before the correct diagnosis was made. My urologist started me on Elmiron which was not successful for me. The next step was bladder distentions, unfortunately those helped for a small window of time. My urologist relocated and I went without treatment for years. Two years ago at the age of 39 I was introduced to a urologist who specialized in IC. My first treatment with him was steroids injected into my bladder upon the discovery of Hunner's ulcers. The injections worked wonders, unfortunately it was only a short term fix, lasting only 9 months. A year passed and I could no longer function with the continual urgency and frequency. My urination was up to 30 times during the day and 5 to 6 night time trips do the bathroom. My urology specialist told me about InterStim therapy. After a lot of research on my part and many discussions we decided that having this disease for 17 years was long enough and it was time for a serious intervention. I had the one week trial of the Medtronic Implants to see if it would be a success for me. I kept a diary for a week, of my urination, including the urgency and frequency levels. During my trial experiment we tried and discussed the option of having not just 1, but 2 InterStim devices permanently placed to help my urgency and frequency caused by my IC. Upon my return for my follow up to report my experience, my doctor reported the trial was a success and we were ready for the permanent placement of the Medtronic InterStim therapy. It's been 10 months now since the surgery and it hasn't cured my urgency and frequency, but it has changed the severity tenfold. I do experience IC flares every now and then, but thanks to modern medications and a great urologist I know what to do to get through them.

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