What I need to know about Interstitial Cystitis/Painful Bladder Syndrome
What is interstitial cystitis/painful bladder syndrome (IC/PBS)?
Interstitial cystitis*—painful bladder syndrome (IC/PBS) 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 it is not one, but several diseases. In recent years, scientists have started to use the terms bladder pain syndrome (BPS) or 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).
The urinary system
In IC/PBS, the bladder wall may be irritated and become scarred or stiff. Glomerulations— pinpoint bleeding—often appear on the bladder wall. Hunner’s ulcers—patches of broken skin found on the bladder wall—are present in 10 percent of people with IC.
Some people with IC/PBS find that their bladder 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 when measured under anesthesia or during urologic testing. People with severe cases of IC/PBS may urinate as many as 60 times a day, including frequent nighttime urination, also called nocturia.
IC/PBS is more common in women than in men. An estimated 3.3 million U.S. women, or 2.7 percent, who are 18 years of age or older have pelvic pain and other symptoms, such as urinary urgency or frequency, that are associated with IC/PBS. An estimated 1.6 million U.S. men, or 1.3 percent, who are 30 to 79 years old have persistent symptoms, such as pain with bladder filling or pain relieved by bladder emptying, that are associated with PBS.
What are the signs of a bladder problem?
Signs of bladder problems include
Some people may have pain without urgency or frequency. Others have urgency and frequency without pain.
- Urgency. The feeling that you need to go right now! Urgency is normal if you haven't been near a bathroom for a few hours or if you have been drinking a lot of fluids. But you may have a problem if you have strong urges before your bladder has had time to fill. All of a sudden, you feel a strong urge to go. At times, you may even have an accident because the urge strikes so quickly you don't have time to find a bathroom.
- Frequency. The feeling that you need to go much more often than anyone else. Doctors and nurses use the term void, which means to empty the bladder. Most people void between four and seven times a day. Drinking large amounts of fluid can cause more frequent voiding. Taking blood pressure medicines called diuretics, or water pills, can also cause more frequent voiding. If you void more than eight times a day, and you don’t take diuretics or drink large amounts of fluid, it may be the sign of a problem.
- Pain. The feeling of more than discomfort when you need to go. Having a full bladder may be uncomfortable, but it should not be painful. You may have a problem if you feel burning or sharp pain in your bladder or urethra—the opening where urine leaves the body.
What causes bladder problems?
Many different problems can cause urgency, frequency, and bladder pain. Just a few of them are
Your doctor will ask you questions and run tests to find the cause of your bladder problems. Usually, the doctor will find that you have either an infection or an overactive bladder. But urgency, frequency, and pain are not always caused by infection.
- bowel disorders
- endometriosis—tissue that normally lines the womb that appears in other places outside of the womb
- bladder cancer
Sometimes the cause is hard to find. If all the test results are normal and all other diseases are ruled out, your doctor may find that you have 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.
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.
Who gets IC/PBS?
Both men and women can get IC/PBS, though
twice as many women are affected as men. It
can occur at any age, but it is most common in
People with IC/PBS rarely have bladder pain all the time. The pain usually comes and goes as the bladder fills and then empties. The pain may go away for weeks or months and then return. People with IC/PBS sometimes refer to an attack of bladder pain as a flare or flare-up. Stress may bring on a flare-up of symptoms in someone who has IC/PBS. But stress does not cause a person to get IC/PBS.
What tests will my doctor use for diagnosis of IC/PBS?
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. In women, endometriosis is a common cause of pelvic pain. 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
Finding the cause of bladder pain may require several tests.
- presence of pain related to the bladder, usually accompanied by frequency and urgency of urination
- absence of other diseases that could cause the symptoms
While tests may aid your doctor in making a diagnosis of IC/PBS, a careful review of your symptoms and a physical exam in the office are generally the most important parts of the evaluation.
- Urine sample. At the doctor's office, you may be given a cup to take into the bathroom. A health professional will give you instructions for collecting urine in the cup. If you have a bladder infection, your urine will contain germs and maybe pus that can be seen with a microscope. The doctor can treat an infection by giving you antibiotics. If your urine is germ-free for weeks or months, but you still have bladder pain, the doctor may decide that you have IC/PBS.
- Bladder exam with a scope. The doctor may do an exam to see the inside of your bladder using a cystoscope. The tip of this long, thin scope is guided gently up the urethra and into the bladder. The doctor can then see inside your bladder by looking through an eyepiece at the other end of the scope. The doctor may fill the bladder with a liquid. When the bladder is filled, the doctor can see the inner wall better. After the exam, you will release the liquid naturally through your urethra.
Inside the Bladder
What does the doctor learn from looking inside your bladder? This exam can help the doctor make sure cancer is not in the bladder. If you have a bladder stone, the doctor can take it out through the cystoscope.
- Symptom scale. Your doctor may ask you to fill out a form with a series of questions about how you feel. The symptom scale cannot be used to diagnose IC/PBS but may allow your doctor to better understand how you are responding to treatment.
Diagnostic tests that help rule out other diseases include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall and urethra, and distention of the bladder under anesthesia.
Urinalysis and Urine 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 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/PBS.
Culture of Prostate Secretions
Although not commonly done, in men without a history of culture-documented urinary tract infections, the doctor might obtain prostatic fluid and examine it for signs of a prostate infection, which can then be treated with antibiotics.
Cystoscopy under Anesthesia with Bladder Distention
The doctor may perform a cystoscopic examination in order to rule out bladder cancer. 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 might also distend or stretch the bladder to its capacity by filling it with a liquid or gas. Because bladder distention is painful for people with IC/PBS, they must be given some form of anesthesia for the procedure.
A biopsy is a tissue sample that can be examined with a microscope. Tissue samples of the bladder and urethra may be removed during a cystoscopy. A biopsy helps rule out bladder cancer.
What treatments can help 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.
No one treatment for IC/PBS has been found that works for everyone. Your doctor or nurse will work with you to find a treatment plan that meets your special needs. The plan may include diet and lifestyle changes, bladder retraining, activity and exercise, physical therapy, and various types of medicines. You should expect some treatment failures along the way, but, with time, you and your doctor or nurse should find a treatment that gives you some relief and helps you cope with your disease.
Diet and Lifestyle Changes
Some people with IC/PBS find that certain foods or drinks bring on their symptoms. Others find no link between symptoms and what they eat.
Learning what foods cause symptoms for you may require some trial and error. Keep a food diary and note the times you have bladder pain. The diary might reveal that your flare-ups always happen, for example, after you eat tomatoes or oranges.
Keeping a food diary might help you identify foods that cause flare-ups.
Some doctors recommend taking an antacid medicine with meals. The medicine reduces the amount of acid that gets into the urine.
If you make changes to your diet, remember to eat a variety of healthy foods.
Bladder retraining is a way to help your bladder hold more urine. People with bladder pain often get in the habit of using the bathroom as soon as they feel pain or urgency. They then feel the need to go before the bladder is really full. The body may get used to frequent voiding. Bladder retraining helps your bladder hold more urine before signaling the urge to urinate.
Keep a bladder diary to track how you are doing. Start by noting the times when you void. Note how much time goes by between voids. For example, you may find that you return to the bathroom every 40 minutes.
Try to stretch out the time between voids. If you usually void every 40 minutes, try to wait at least 50 minutes before you go to the bathroom.
If your bladder becomes painful, you may use the bathroom. But you may find that your first urge to use the bathroom goes away if you ignore it. Find ways to relax or distract yourself when the first urge strikes.
After a few days, you may be able to stretch the time out to 60 or 70 minutes, and you may find that the urge to urinate does not return as soon.
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 4 to 48 hours after distention, but should return to predistention levels or improve within 2 to 4 weeks.
During a bladder instillation, also called a bladder wash or bath, the bladder is filled with a solution that is held for varying periods of time, averaging 10 to 15 minutes, before being emptied.
The only drug approved by the U.S. Food and Drug Administration (FDA) for bladder instillation is dimethyl sulfoxide (Rimso-50), also called DMSO. DMSO treatment involves guiding a narrow tube called a catheter up the urethra into the bladder. A measured amount of 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 or two 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. Highly motivated patients who are willing to catheterize themselves may, after consultation with their doctor, be able to have DMSO treatments at home. Self-administration is less expensive and more convenient than going to the doctor’s office.
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 garliclike 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 complete blood count and kidney and liver function tests, should be done about every 6 months.
Pentosan Polysulfate Sodium (Elmiron)
This first oral drug developed for IC was approved by the FDA in 1996. In clinical trials, the drug 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.
The FDA-recommended oral dosage of Elmiron is 100 milligrams (mg), three times a day. Patients may not feel relief from IC pain for the first 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. If 6 months of Elmiron therapy provides no benefit, it is reasonable to stop the drug.
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. Because Elmiron has mild blood-thinning effects, it should be discontinued prior to planned surgery.
Other Oral Medications
Aspirin and ibuprofen may be a first line of defense against mild discomfort. Doctors may recommend other drugs to relieve pain.
Some people have experienced improvement in their urinary symptoms by taking tricyclic antidepressants or antihistamines. A tricyclic antidepressant called amitriptyline (Elavil) 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. In people 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. A person should always consult a doctor before using any drug for an extended amount of time.
Electrical Nerve Stimulation
Mild electrical pulses can be used to stimulate the nerves to the bladder—either through the skin or with an implanted device. The method of delivering impulses through the skin is called transcutaneous electrical nerve stimulation (TENS). With 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 been suggested that the electrical pulses may increase blood flow to the bladder, strengthen pelvic muscles that help control the bladder, or trigger the release of substances that block pain.
TENS is relatively inexpensive and allows people with IC/PBS 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 people 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.
A person may consider having a device implanted that delivers regular impulses to the bladder. A wire is placed next to the tailbone and attached to a permanent stimulator under the skin. The FDA has approved this device, marketed as the Inter-Stim system, to treat urge incontinence, urgency-frequency syndrome, and urinary retention in people for whom other treatments have not worked.
No scientific evidence links diet to IC/PBS, but many 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.
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 a major cause of bladder cancer. One of the best things smokers can do for their bladder and their overall health is to quit.
Many patients feel that gentle stretching exercises help relieve IC/PBS 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, they try to lengthen the time between scheduled voids. A diary in which to record voiding times is helpful in keeping track of progress.
New evidence indicates that certain types of physical therapy, when administered by an experienced physical therapist, may improve IC/PBS symptoms. Patients should discuss this option with their health care provider.
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 advantages and complications that should be discussed with a surgeon. A doctor may recommend consulting another surgeon for a second opinion before taking this step. Most surgeons are reluctant to operate because some people still have symptoms after surgery.
People considering surgery should discuss the potential risks and benefits, side effects, and long- and short-term complications with a surgeon, their family, and people who have already had the procedure. Surgery requires anesthesia, hospitalization, and weeks or months of recovery. As the complexity of the procedure increases, so do the chances for complications and failure.
People should check with their doctor to locate a surgeon experienced in performing specific procedures.
Two procedures—fulguration and resection of ulcers—can be done with instruments inserted through the urethra. 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. Laser surgery in the urinary tract should be reserved for people with Hunner’s ulcers and should be done only by doctors with the special training and expertise needed to perform the procedure.
Another surgical treatment is 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—also called large intestine—is then removed, reshaped, and attached to what remains of the bladder. After the incisions heal, the patient may void less frequently. The effect on pain varies greatly; IC/PBS can sometimes recur on the segment of colon used to enlarge the bladder.
Even in carefully selected patients—those with small, contracted bladders—pain, frequency, and urgency may remain or return after surgery, and they may have additional problems with infections in the new bladder and difficulty absorbing nutrients from the shortened colon. Some patients become incontinent, while others cannot void at all and must insert a catheter into the urethra to empty the bladder.
Bladder removal, called a cystectomy, is another, infrequently used surgical option. Once the bladder has been removed, different methods can be used to reroute the urine. In most cases, ureters are attached to a piece of colon that opens onto the skin of the abdomen. This procedure is called a urostomy and the opening is called a stoma. Urine empties through the stoma into a bag outside the body. Some urologists are using a second technique that also requires a stoma but allows urine to be stored in a pouch inside the abdomen. At intervals throughout the day, the patient puts a catheter into the stoma and empties the pouch. Patients with either type of urostomy must be very careful to keep the area in and around the stoma clean to prevent infection. Serious potential complications may include kidney infection and small bowel obstruction.
A third method to reroute urine involves making a new bladder from a piece of the patient’s colon and attaching it to the urethra. After healing, the patient may be able to empty the newly formed bladder by voiding at scheduled times or by inserting a catheter into the urethra. Only a few surgeons have the special training and expertise needed to perform this procedure.
Even after total bladder removal, some patients still experience variable IC/PBS symptoms in the form of phantom pain. Therefore, the decision to undergo a cystectomy should be made only after testing all alternative methods and seriously considering the potential outcome.
Removing the bladder is not always done in patients with severe disease. Some urologists recommend rerouting urine to a piece of bowel connected to the abdominal wall. Urine is then collected in an external bag that is emptied periodically. While this procedure may or may not improve pelvic pain, it can decrease frequency and improve quality of life for patients who experience frequent urges to urinate.
Are there any special concerns regarding IC/PBS?
No evidence exists that IC/PBS increases the risk of bladder cancer.
Researchers have little information about pregnancy and IC/PBS but believe that the disorder does not affect fertility or the health of the fetus. Some women find that their IC/PBS goes into remission during pregnancy, while others experience a worsening of their symptoms.
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 maintains a list of support groups.
Points to Remember
- Bladder problems have many possible causes.
- Your doctor will need to do tests to find the cause of your bladder problems. If all the test results are normal, you may have IC/PBS.
- No one treatment option for IC/PBS works for everybody.
- Treatments for IC/PBS may include changing your diet and exercising.
- Medicines for IC/PBS may be taken by mouth or put directly into the bladder through a tube by a doctor.
- Nerve stimulation helps some people with IC/PBS.
- Surgery is a last resort for treating IC/PBS.
interstitial cystitis (IN-tur-STISH-uhl) (siss-TY-tiss)
pentosan polysulfate sodium (PEN-toh-san)
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