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Interstitial Cystitis / Painful Bladder Syndrome

Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate, a frequent need to urinate, 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 during vaginal intercourse.

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.

What causes IC/PBS?

Some of the symptoms of IC/PBS resemble those of bacterial infection, but medical tests reveal no organisms in the urine of people with IC/PBS. Furthermore, people 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 IC. 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.

Many women with IC/PBS have other conditions such as irritable bowel syndrome and fibromyalgia. Scientists believe IC/PBS may be a bladder manifestation of a more general condition that causes inflammation in various organs and parts of the body.

Researchers are 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. IC / PBS is far more common in women than in men by a factor of 9:1

How is IC/PBS diagnosed?

Because symptoms are similar to those of other disorders of the bladder and 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 sexes are urinary tract infections and bladder cancer. In men, common diseases include chronic prostatitis or chronic pelvic pain syndrome. IC/PBS is not associated with any increased risk of developing cancer.

The diagnosis of IC/PBS in the general population is based on the

  • presence of pain related to the bladder, usually accompanied by severe frequency and urgency of urination. Avoiding diary is helpful to quantify the severity of the problem.
  • absence of other diseases that could cause the symptoms Diagnostic tests that help rule out other diseases include urine cytology, Urine microscope and Culture, Cystoscopy and biopsy of the bladder wall, distension of the bladder under anaesthesia, and laboratory examination of prostate secretions.

Urine microscope and Culture

Examining urine with a microscope and 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. A urine sample is obtained by collecting urine midstream in a sterile container. White and red blood cells and bacteria in the urine may indicate an infection of the urinary tract, which can be treated with an antibiotic. If urine is sterile for weeks or months while symptoms persist, the doctor may consider a diagnosis of IC/PBS.

Cystoscopy

The doctor may perform a cystoscopic examination under anaesthesia in order to rule out bladder cancer. Glomerulations (pinpoint bleeding caused by recurrent irritation) often appear on the bladder wall. Hunner`s ulcers are present in the bladders of 10 percent of patients with IC. The bladder wall may be irritated and become scarred or stiff. The doctor might distend or stretch the bladder to its capacity by filling it with water. A biopsy of the bladder wall helps rule out bladder cancer.

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 with a change in diet or treatments or without explanation. Even when symptoms disappear, they may return after days, weeks, months, or years. Scientists do not know why.

Because the causes of IC/PBS are unknown, current treatments are aimed at relieving symptoms. Many people are helped for variable periods by one or a combination of treatments. As researchers learn more about IC/PBS, the list of potential treatments will change, so patients should discuss their options with a doctor.

Oral Medications

Anti inflammatory tablets such as Ibuprofen or Diclofenac is often the first line of defence against mild discomfort. In people with severe pain, narcotic analgesics narcotics may be necessary.

Some people have experienced improvement in their urinary symptoms by taking tricyclic antidepressants orantihistamines. A tricyclic antidepressant called amitriptyline may help reduce pain, increase bladder capacity, and decrease frequency and nocturia. Some people may not be able to take it because it makes them too tired during the day.

Pentosan Polysulfate Sodium (Elmiron)

In clinical trials, the Elmiron improved symptoms in 30 percent of patients treated. Doctors do not know exactly how the drug works, but one theory is that it may repair defects that might have developed in the lining of the bladder.

Elmiron is taken orally at a dose of 100 mg, three times a day. Patients may not feel relief from IC pain for the first 2 to 4 months. A decrease in urinary frequency may take up to 6 months. Patients are urged to continue with therapy for at least 6 months to give the drug an adequate chance to relieve symptoms.

Elmiron`s side effects are limited primarily to minor gastrointestinal discomfort. A small minority of patients experienced some hair loss, but hair grew back when they stopped taking the drug. Researchers have found no negative interactions between Elmiron and other medications.

Elmiron may affect liver function, which should therefore be monitored by the doctor.

Because Elmiron has not been tested in pregnant women, the manufacturer recommends it not be used during pregnancy, except in the most severe cases.

Other oral medications

The use of anti-histamines, specifically H2 blockers, such as cimetidine has been widespread in the U.K. Although the mechanism of action is unclear, small trials have demonstrated beneficial effects in some patients.

Bladder Instillation

A measured amount of of dimethyl sulfoxide (DMSO) is passed through the catheter into the bladder, where it is retained for about 15 minutes before being expelled. Treatments are given every week for 6 to 8 weeks and repeated as needed. Most people who respond to DMSO notice improvement 3 or 4 weeks after the first 6- to 8-week cycle of treatments.

Doctors think DMSO works in several ways. Because it passes into the bladder wall, it may reach tissue more effectively to reduce inflammation and block pain. It may also prevent muscle contractions that cause pain, frequency, and urgency.

A bothersome but relatively insignificant side effect of DMSO treatments is a garlic-like taste and odor on the breath and skin that may last up to 7 hours after treatment. Long-term treatment has caused cataracts in animal studies, but this side effect has not appeared in humans. Blood tests, including a full blood count and kidney and liver function tests, should be done about every 6 months.

Other drugs include hyaluronic acid or Cystistat. This treatment is administered into the bladder once a week for 4 to 12 weeks and monthly thereafter. It may take more than 5 or 6 instillations before the patients start to describe relief of their symptoms.

Bladder Distention

Many people with IC/PBS have noted an improvement in symptoms after a bladder distention has been done to diagnose the condition. In many cases, the procedure is used as both a diagnostic test and initial therapy.

Researchers are not sure why distention helps, but some believe it may increase capacity and interfere with pain signals transmitted by nerves in the bladder. Symptoms may temporarily worsen 24 to 48 hours after distention, but should return to predistention levels or improve within 2 to 4 weeks.

Transcutaneous Electrical Nerve Stimulation

With transcutaneous electrical nerve stimulation (TENS), mild electric pulses enter the body for minutes to hours two or more times a day either through wires placed on the lower back or just above the pubic area, between the navel and the pubic hair, or through special devices inserted into the vagina in women or into the rectum in men. Although scientists do not know exactly how TENS relieves pelvic pain, it has trigger the release of substances that block pain.

TENS is relatively inexpensive and allows the patient to take an active part in treatment. Within some guidelines, the patient decides when, how long, and at what intensity TENS will be used. It has been most helpful in relieving pain and decreasing frequency in patients with Hunner`s ulcers. Smokers do not respond as well as nonsmokers. If TENS is going to help, improvement is usually apparent in 3 to 4 months.

Diet

No scientific evidence links diet to IC/PBS, but many doctors and patients find that alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages, and high-acid foods may contribute to bladder irritation and inflammation. Some people also note that their symptoms worsen after eating or drinking products containing artificial sweeteners. Eliminating various items from the diet and reintroducing them one at a time may determine which, if any, affect a person`s symptoms. However, maintaining a varied, well-balanced diet is important.

Smoking

Many people feel smoking makes their symptoms worse. How the by-products of tobacco that are excreted in the urine affect IC/PBS is unknown. Smoking, however, is the major known cause of bladder cancer. One of the best things smokers can do for their bladder and their overall health is to quit.

Exercise

Many patients feel that gentle stretching exercises help relieve IC/PBS symptoms.

Bladder Training

People who have found adequate relief from pain may be able to reduce frequency by using bladder training techniques. Methods vary, but basically patients decide to void-empty their bladder-at designated times and use relaxation techniques and distractions to keep to the schedule. Gradually, they try to lengthen the time between scheduled voids. A Voiding diary (see For Patients/ Questionnaires) in which to record voiding times is helpful in keeping track of progress.

Bladder Diary from What I need to know about Bladder Control for Women at www.kidney.niddk.nih.gov.

Surgery

Surgery should be considered only if all available treatments have failed and the pain is disabling. Many approaches and techniques are used, each of which has its own advantages and complications that should be discussed with a surgeon. These range from injections of BOTOX into the bladder wall to major reconstructive surgery.

Coping

The emotional support of family, friends, and other people with IC/PBS is very important in helping patients cope. Studies have found that people who learn about the disorder and become involved in their own care do better than people who do not. The Interstitial Cystitis Association (ICA) maintains a list of support groups.

Attention! The information provided here is for educational and informational purposes only. In no way should it be considered as offering medical advice. Please check with your physician for further evaluation.

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