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Interstitial cystitis (IC) is a chronic pelvic pain disorder which is mostly diagnosed in women, which results in recurring discomfort or pain in the bladder and the surrounding pelvic region. Men with similar symptoms have, in the past, been diagnosed with chronic prostatitis, which reflected the belief that inflammation in the prostate was the cause of the symptoms. More recently, chronic prostatitis has been renamed Chronic Pelvic Pain Syndrome (CPPS), which reflects the current belief that the symptoms may be caused by inflammation of the bladder, pelvic muscles or the prostate. The symptoms of IC vary from case to case and even in the same individual from time to time. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate (urgency), 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.
In IC, the bladder wall may be irritated and become scarred or stiff. Glomerulations (pinpoint bleeding caused by recurrent irritation) may appear on the bladder wall. Some people with IC find that their bladders cannot hold much urine, which increases the frequency of urination. Frequency, however, is not always specifically related to bladder size; many people with severe frequency have normal bladder capacity. People with severe cases of IC may urinate as many as 60 times a day.
Also, people with IC often experience pain during sexual intercourse. IC is far more common in women than in men. Of the more than 700,000 Americans estimated to have IC, 90 percent are women. CPPS is the most common diagnosis given to men under age 50 with pelvic or genital pain and urinary symptoms, and as many as 10% of men will have chronic prostatitis or CPPS in their lifetime.
Some of the symptoms of IC resemble those of bacterial infection, but medical tests reveal no organisms in the urine of patients with IC. Furthermore, patients with IC do not respond to antibiotic therapy. Researchers are working to understand the causes of IC and to find effective treatments.
One theory being studied is that IC is an autoimmune response following a bladder infection. Another theory is that a bacterium may be present in bladder cells but not detectable through routine urine tests. Some scientists have suggested that certain substances in urine may be irritating to people with IC, but no substance unique to people with IC has as yet been isolated. 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. No gene has yet been implicated as a cause.
Because IC varies so much in symptoms and severity, most researchers believe that it is not one, but several, diseases. In the past, cases were mainly categorized as ulcerative IC or nonulcerative IC, based on whether ulcers had formed on the bladder wall. But many researchers and clinicians have questioned the usefulness of this classification, since the vast majority of cases do not involve ulcers, and their presence or absence does not influence treatment options as much as other factors do.
Factors that influence treatment options include whether bladder capacity under anesthesia is great or small, and whether mast cells are present in the tissue of the bladder wall, which may be a sign of an allergic or autoimmune reaction. In some cases, the success or failure of a treatment helps characterize the type of IC. For example, some cases respond to changes in diet while others do not.
Because symptoms are similar to those of other disorders of the urinary system and because there is no definitive test to identify IC, doctors must rule out other conditions before considering a diagnosis of IC. Among these disorders are urinary tract or vaginal infections, bladder cancer, bladder inflammation or infection caused by radiation to the pelvic area, eosinophilic and tuberculous cystitis, kidney stones, endometriosis, neurological disorders, sexually transmitted diseases, low-count bacteria in the urine, and, in men, chronic bacterial and nonbacterial prostatitis.
Pinpoint bleeding on the bladder wall
The diagnosis of IC in the general population is based on:
Diagnostic tests that help identify other conditions include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall, distention of the bladder under anesthesia, urine cytology, and, in men, laboratory examination of prostate secretions.
These tests can detect and identify the most common organisms that infect the urine and that may cause symptoms similar to IC. However, organisms such as Chlamydia cannot be detected with these tests, so a negative culture does not rule out all types of infection. A urine sample is obtained either by catheterization or by the "clean catch" method. For a clean catch, the patient washes the genital area before 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.
A pelvic examination is an important part of the initial evaluation of women with pelvic pain or IC. The exam can identify abnormalities of the bladder, uterus, and ovaries that may be the cause of the symptoms. Many women with IC may have pain that is related to the pelvic floor muscles, the muscles which surround the vagina and support the bladder. Some women will have pain with pressure on the pelvic muscles through the vagina. In some women there are specific points in the pelvic muscles, called trigger points, that can be a cause of pelvic pain. If pelvic muscle tightness or trigger points are identified, many women will improve with pelvic floor biofeedback therapy.
In men, the doctor might obtain prostatic fluid and examine it for signs of an infection, which can then be treated with antibiotics.
Most patients with IC will experience increased pain or bladder symptoms when certain solutions are placed into the bladder. The KCl sensitivity test is performed in the office, and can help to identify which patients are most likely to have IC.
During cystoscopy, the doctor uses a cystoscope--an instrument made of a hollow tube about the diameter of a drinking straw with several lenses and a light--to see inside the bladder and urethra. The doctor will also distend or stretch the bladder to its capacity by filling it with a liquid or gas. Because bladder distention is painful in patients with IC, they must be given some form of anesthesia for the procedure. These tests can detect bladder wall inflammation, a thick, stiff bladder wall, and Hunner's ulcers. Glomerulations are usually seen only after the bladder has been stretched to capacity.
The doctor may also test the patient's maximum bladder capacity--the maximum amount of liquid or gas the bladder can hold. This must be done under anesthesia since the bladder capacity is limited by either pain or a severe urge to urinate. A small bladder capacity under anesthesia helps support the diagnosis of IC.
A biopsy is a tissue sample that is then examined under a microscope. Samples of the bladder and urethra may be removed during a cystoscopy and later examined with a microscope. A biopsy helps rule out bladder cancer, but in modern practice bladder biopsies are rarely necessary.
Scientists have not yet found a cure for IC, nor can they predict who will respond best to which treatment. Symptoms may disappear without explanation or coincide with an event such as a change in diet or treatment. Even when symptoms disappear, they may return after days, weeks, months, or years. Scientists do not know why.
Because the causes of IC are unknown, current treatments are aimed at relieving symptoms and helping patients to function better. Our goal is to help patients to be able to do the things that are important in their lives, whether it be work, exercise, playing with their children, sexual intercourse, or other activities. Most people are helped for variable periods by one or a combination of treatments. We stress the use of multiple types of interventions, including medication as needed, pelvic floor therapy, lifestyle changes, and other treatments. As researchers learn more about IC, the list of potential treatments will change, so patients should discuss their options with a urologist.
Because many patients have noted an improvement in symptoms after a bladder distention has been done to diagnose IC, the procedure is often thought of as one of the first treatment attempts.
Researchers are not sure why distention helps, but some believe that 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 after 2 to 4 weeks.
Our experience, as well as most IC experts, is that many patients with pelvic pain will improve with a combination of medications. These include Elmiron to repair the bladder lining, an antihistamine to block pain fibers in the bladder, and an anti-depressant to block pain signals from reaching the brain. This combination therapy is very effective over 3-6 months in reducing pelvic or bladder pain.
This first oral drug developed for IC was approved by the FDA in 1996. In clinical trials, the drug improved symptoms in 38 percent of patients treated. Doctors do not know exactly how it works, but one theory is that it may repair defects that might have developed in the lining of the bladder.
The FDA-recommended oral dosage of Elmiron is 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 that it not be used during pregnancy, except in the most severe cases.
Anti-depressants can provide pain relief for chronic pelvic pain by blocking the transmission of pain nerves in the spinal cord and in the brain. The medication will cause side effects during the first month of use, but the side effects will resolve in 4-6 weeks. The most common side effects are nausea, headache, difficulty sleeping,dry mouth, blurred vision, constipation, sedation (can interfere with driving or operating machinery), agitation and anxiety. The pain relief usually starts around the time that the side effects wear off, roughly 4-6 weeks after they are started. Many patients want to stop the medications after a few weeks because they have side effects and no improvement, but many patients will get pain relief if they can "stick it out" for 4-6 weeks
Aspirin and ibuprofen are easy to obtain and may be a first line of defense against mild discomfort. Doctors may recommend other drugs to relieve pain.
Some patients have experienced improvement in their urinary symptoms by taking antihistamines. In patients with severe pain, narcotic analgesics such as acetaminophen (Tylenol) with codeine or longer acting narcotics may be necessary.
All drugs--even those sold over the counter--have side effects. Patients should always consult a doctor before using any drug for an extended time.
During a bladder instillation the bladder is filled with a solution that is held for varying periods of time, averaging 10 to 15 minutes, before being emptied.
Most patients start bladder instillations with a cocktail that contains Elmiron, sodium bicarbonate, and lidocaine. Patients may receive the medication 1-3 times per week for 6-8 weeks. Most patients will notice improvement 3-4 weeks after starting the bladder instillations. Patients who fail to improve with these medications may try weekly instillations of a medication called DMSO (dimethyl sulfoxide), a pain-less medication that can be placed into the bladder in the office. Other patients may want to consider bladder instillation with medications such as capsaicin or chlorpactin, but these medications must be instilled into the bladder under anesthestia.
Doctors think the bladder instillations work in several ways. Elmiron is thought to repair a defect in the coating of the bladder lining that allows the urine to irritate the bladder. DMSO passes into the bladder wall where it may reduce inflammation and block pain. It may also prevent muscle contractions that cause pain, frequency, and urgency. Capsaicin, the chemical that makes spicy peppers hot, is thought to desensitize the pain fibers in the bladder. The exact mechanism by which these medications work is not always clear, but trial and error has found that many patients get benefit from them.
Bladder instillations cause minimal side effects in most patients. The standard Elmiron cocktail is not irritating to the bladder wall, but many patients will have some minor symptoms for a few days after each catheterization. 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 72 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 complete blood count and kidney and liver function tests, should be done about every 6 months.
In many men and women pelvic pain can be caused, in part, by spasm of the pelvic floor muscles. This condition, called pelvic floor dysfunction of PFD, can be a primary cause of pain or can be a side effect of long-term pelvic pain from other causes. This condition is treated by pelvic floor therapy, a treatment that helps patients learn how to strengthen and relax their pelvic floor muscles. MBUA has a full-time pelvic therapy clinician who is an expert in this type of treatment.
There is no scientific evidence linking diet to IC, 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 patients also note that their symptoms worsen after eating or drinking products containing artificial sweeteners. Patients may try eliminating various items from their diet and reintroducing them one at a time to determine which, if any, affect their symptoms. It is important, however, to maintain a varied, well-balanced diet.
Many patients feel that smoking makes their symptoms worse. Because smoking is the major known cause of bladder cancer, one of the best things smokers can do for their bladder is to quit.
Many patients feel that gentle stretching exercises help relieve IC symptoms.
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, patients try to lengthen the time between scheduled voids. A diary in which to record voiding times is usually helpful in keeping track of progress.
TUNA is a treatment that uses radiofrequency energy to heat the inside of the prostate. It was initially developed to shrink enlarged prostates, but it is effective at decreasing pain in some men with chronic prostatitis/CPPS. Click here to learn more about TUNA.
Surgery is very rarely a good treatment option for patients with IC/CPPS. Surgery should be considered only if all available treatments have failed and the pain is disabling. Most doctors are reluctant to operate because the outcome is unpredictable--some people still have symptoms after surgery.
Those considering surgery should discuss the potential risks and benefits, side effects, and long- and short-term complications with a surgeon and with their family, as well as with people who have already had the procedure. Surgery requires anesthesia, hospitalization, and weeks or months of recovery, and as the complexity of the procedure increases, so do the chances for complications and for failure.
One type of surgical procedure is performed with a telescope passed through the urethra into the bladder. This procedure, called fulguration or resection, can be performed on the minority of patients who have ulcers in the bladder lining, called Hunner's ulcers. The goal of the procedure is to remove the ulcerated area. Fulguration involves burning Hunner's ulcers with electricity or a laser. When the area heals, the dead tissue and the ulcer fall off, leaving new, healthy tissue behind. Resection involves cutting around and removing the ulcers. Both treatments are done under anesthesia and use special instruments inserted into the bladder through a cystoscope.
Another surgical treatment is bladder augmentation, which makes the bladder larger. In most of these procedures, scarred, ulcerated, and inflamed sections of the patient's bladder are removed, leaving only the base of the bladder and healthy tissue. A piece of the patient's colon (large intestine) is then removed, reshaped, and attached to what remains of the bladder. After the incisions heal, the patient may void less frequently, but many patients will not be able to urinate normally and need to catheterize themselves four times daily to empty the bladder. The effect on pain varies greatly, and this procedure is rarely performed.
A surgical variation of TENS, called sacral nerve root stimulation, involves permanent implantation of electrodes and a unit emitting continuous electrical pulses. Studies of this experimental procedure are now under way, but the effect on chronic bladder pain has been disappointing.
Bladder removal, called cystectomy, is another surgical option. This was popularized in the 1980's but is rarely performed anymore. Once the bladder has been removed, different methods can be used to reconstruct the urinary tract. The most preferable method involves the creation of a new bladder from a piece of the patient's intestines which is attached it to the urethra. After healing, most patients are able to empty the newly formed bladder by voiding at scheduled times. This is a major, life-changing surgery that is only considered in patients with the most severe symptoms of bladder pain and urinary frequency that does not respond to other treatments. This type of reconstruction was developed for patients who require cystectomy for bladder cancer but it can be used successfully in patients with IC/CPPS.
Some patients can still have pelvic pain after the bladder is removed, which reflects our still limited knowledge about the cause of IC. Therefore, the decision to undergo a cystectomy should be made only after testing all alternative methods and after seriously considering the potential outcome.
There is no evidence that IC increases the risk of bladder cancer.
Researchers have little information on pregnancy and IC but believe that the disorder does not affect fertility or the health of the fetus. Some women find that their IC goes into remission during pregnancy, while others experience a worsening of their symptoms.
The emotional support of family, friends, and other people with IC is very important in helping patients cope. Studies have found that patients who learn about the disorder and become involved in their own care do better than patients who do not. See the Interstitial Cystitis Association of America's website under "Support Groups" to find a group near you.
As researchers learn more about the causes of IC, more accurate and less invasive diagnostic procedures are likely to emerge. For example, some researchers are studying the possibility that urine samples from people with IC contain substances not found in normal urine. At the present time there are no specific tests that can diagnose patients with IC.
Although answers may seem slow in coming, researchers are working to solve the painful riddle of IC. Some scientists receive funds from the Federal Government to help support their research, while others receive support from their employing institution, drug companies, or patient support associations.
NIDDK's investment in scientifically meritorious IC research across the country has grown considerably since 1987. The Institute now supports research that is looking at various aspects of IC, such as how the components of urine may injure the bladder and what role organisms identified by nonstandard methods may have in causing IC. In addition to funding research, NIDDK sponsors scientific workshops where investigators share the results of their studies and discuss future areas for investigation.
An important part of NIDDK's IC research program has been the National IC Database Study, the first systematic, long-term look at a large number of people with IC. Baseline data have been analyzed to provide a foundation for subsequent studies in the IC Clinical Trials Group.
In 1998, NIDDK initiated the IC Clinical Trials Group, a project designed to develop and test new treatment strategies for patients with IC. Multiple trials are ongoing but the knowledge of the causes and optimal treatments for IC remains elusive.
The materials listed below may be found in medical libraries, in many college and university libraries, through interlibrary loan in most public libraries, and at bookstores. Items are listed for information only; inclusion does not imply endorsement by NIH.
Brody J. Interstitial cystitis: help for a puzzling illness. New York Times. Jan. 25, 1995: B7.
Hanno P. Interstitial cystitis and related diseases. In Walsh PC, Retik AB, Vaughan ED, Wein AJ, eds. Campbell's Urology. 7th ed. Philadelphia: WB Saunders; 1998: 631-662.
Wein A, Hanno P, eds. Interstitial cystitis: an update of the current information. Urology. 1997;49(5A, suppl.).
Moldwin RM. Interstitial cystitis survival guide: your guide to the latest treatment options and coping strategies. Oakland, CA: New Harbinger Publications, Inc.; 2000. (Available by calling 1-800-HELP-ICA.)
Sandler GG, Sandler A. Patient to patient: managing interstitial cystitis and overlapping conditions. New Orleans, LA: Bon Ange LLC; 2000.
Sant G, ed. Interstitial cystitis. Philadelphia: Lippincott-Raven; 1997.
More information regarding IC diagnosis and treatment, and information from other men and women with IC is available at the web sites listed in the box in the sidebar near the top of the page.