Interstitial Cystitis: A Little Known Disabling Disease

Interstitial Cystitis: A Little Known Disabling Disease

I was recently diagnosed with a condition called Interstitial Cystitis and it has drastically changed my life. I am unable to do basic everyday things that I previously took for granted. I cannot leave my house for extended periods of time. I am unable to walk or be on my feet for more than an hour at a time. The pain caused by this condition is constant and very difficult to manage, as are the other symptoms of the disease which include frequency and urgency of urination. Due to these circumstances I have been unable to work, but due to the fact that this condition is not common and most people don't know about it, I have had difficulty in having it considered a legitimate disability.

I plan to describe Interstitial Cystitis and how it effects daily living. I will also address the limitations that many patients face including those on physical activities, driving, and working. By reviewing the symptoms I will show that IC is a debilitating disease that should be considered a disability.

What is Interstitial Cystitis?

Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms can vary from person to person and even in the same individual. People experience discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate (urgency), a frequent need to urinate (frequency), or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women's symptoms often get worse during menstruation. They may sometimes experience pain with vaginal intercourse. (Moldwin, 12)

Because IC varies so much in symptoms and severity, most researchers believe that it is not one, but several diseases. In recent years, scientists have started to use the term painful bladder syndrome (PBS) to describe cases with painful urinary symptoms that may not meet the strictest definition of IC. The term IC / PBS includes all cases of urinary pain that can't be attributed to other causes, such as infection or urinary stones. "The term interstitial cystitis, or IC, is used alone when describing cases that meet all of

the IC criteria established by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)". (Forum)

In IC / PBS, the bladder wall may be irritated and become scarred or stiff. Glomerulations, which are areas of pinpoint bleeding caused by recurrent irritation, often appear on the bladder wall. Hunner's ulcers are present in 10 percent of patients with IC. Some people with IC / PBS find that their bladders cannot hold much urine, which increases the frequency of urination. People with severe cases of IC / PBS may urinate as many as 60 times a day, including frequent nighttime urination (nocturia). (Forum) IC / PBS is far more common in women than in men. Of the estimated 1 million Americans with IC, up to 90 percent are women.

What causes IC?

Some of the symptoms of IC / PBS resemble those of bacterial infection, but in IC patients there is no bacteria present in the urine. Furthermore, patients with IC / PBS do not respond to antibiotic therapy. Researchers are working to understand the causes of IC / PBS and to find effective treatments. In recent years, researchers have isolated a substance found almost exclusively in the urine of people with interstitial cystitis. They have named the substance antiproliferative factor, or APF, because it appears to block the normal growth of the cells that line the inside wall of the bladder. Researchers anticipate

that learning more about APF will lead to a greater understanding of the causes of IC and to possible treatments. (Simone, 38)

Researchers are also beginning to explore the possibility that heredity may play a part in some forms of IC. In a few cases, IC has affected a mother and a daughter or two sisters, but it does not commonly run in families.

How is IC / PBS diagnosed?

Because symptoms are similar to those of other disorders of the urinary bladder and because there is no definitive test to identify IC / PBS, doctors must rule out other treatable conditions before considering a diagnosis of IC / PBS. The most common of these diseases in both genders are urinary tract infections and bladder cancer. In men, common diseases include chronic prostatitis or chronic pelvic pain syndrome. (Forum)

The diagnosis of IC / PBS in the general population is based on presence of pain related to the bladder, usually accompanied by frequency and urgency, and absence of other diseases that could cause the symptoms

Diagnostic tests that help in ruling out other diseases include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall, distention of the bladder under anesthesia, urine cytology, and laboratory examination of prostate secretions. Culturing the urine can detect and identify the primary organisms that are known to infect the urinary tract and that may cause symptoms similar to IC / PBS. If urine is sterile for weeks or months while symptoms persist, the doctor may consider a diagnosis of IC / PBS.

The doctor may perform a cystoscopic examination in order to rule out bladder cancer. The doctor uses a cyst scope to see inside the bladder and urethra and samples of the bladder and urethra may be removed for a biopsy. The doctor may also test the patient's maximum bladder capacityÐ'--the maximum amount of liquid or gas the bladder can hold. This procedure must also be done under anesthesia since the bladder capacity is limited by either pain or a severe urge to urinate. (Moldwin, 83)

What are the treatments for IC / PBS?

Scientists have not yet found a cure for IC / PBS, nor can they predict who will respond best to which treatment. Symptoms may disappear without explanation but even when that happens, they may return after days, weeks, months, or years. Scientists do not know why. "Because the causes of IC / PBS are unknown, treatments are aimed at relieving symptoms". (Simone, 98) Many people are helped for variable periods by one or a combination of treatments.

Many patients have noted an improvement in symptoms after a bladder distention