What is interstitial cystitis?
Interstitial cystitis is a chronic bladder problem. About 750,000 Americans have interstitial cystitis. Most of them are women. People with interstitial cystitis have a bladder wall that is inflamed and irritated (red and sore). This inflammation can scar the bladder or make it stiff. A stiff bladder can't expand as urine fills it. There may be pinpoint bleeding from the walls of the bladder. A few people get sores in the bladder lining.
People with interstitial cystitis may have many of the following symptoms:
An urgent need to urinate, both in the daytime and during the night
Pressure, pain and tenderness around the bladder, pelvis and perineum (the area between the anus and vagina or the anus and scrotum). This pain and pressure may increase as the bladder fills and decrease as it empties in urination.
A bladder that won't hold as much urine as it did before
Pain during sexual intercourse
In men, discomfort or pain in the penis or scrotum
In many women, the symptoms get worse before their menstrual period. Stress may also make the symptoms worse, but it doesn't cause them.
What causes interstitial cystitis?
We don't yet know what causes interstitial cystitis. We do know that infections with bacteria or viruses don't cause it. It might be caused by a defect in the lining of the bladder. Normally, the lining protects the bladder wall from the toxic effects of urine. In about 70 percent of people with interstitial cystitis, the protective layer of the bladder is “leaky.” This may let urine irritate the bladder wall, causing interstitial cystitis.
Other possible causes may be an increase of histamine-producing cells in the bladder wall or an autoimmune response (when antibodies are made that act against a part of the body).
How does my doctor know I have interstitial cystitis?
You may have interstitial cystitis if any of the following occur:
You have to urinate often or urgently
You have pelvic or bladder pain
A urologist (a doctor whose specialty is problems of the urinary tract) finds bladder wall inflammation, pinpoint bleeding or ulcers during an exam with a special scope (called a cystoscope) that looks inside your bladder
Your doctor has ruled out other diseases such as urinary tract infections, vaginal infections, bladder cancer, sexually transmitted diseases and, in men, chronic prostatitis
How is interstitial cystitis treated?
There is no cure yet for interstitial cystitis. Many treatments can help with your symptoms. Most people feel better after trying one or more of the following treatments:
Diet. Your doctor may tell you to change what you eat. You may need to avoid alcohol, acidic foods and tobacco.
Bladder distention. Sometimes people feel better after having a bladder distention. Under anesthesia, a doctor overfills your bladder with fluid. This stretches the walls of the bladder. Doctors don't know why distention helps. It may make your bladder be able to hold more urine. It may also interfere with pain signals sent by nerves in the bladder.
Medicine. Your doctor may have you take an oral medicine called pentosan polysulfate (brand name: Elmiron). This medicine helps to protect the lining of the bladder wall from the toxic parts of urine.
Another oral medicine used to treat interstitial cystitis is an antihistamine called hydroxyzine (brand names: Vistaril and Atarax). This medicine reduces the amount of histamine that is made in the bladder wall.
Another medicine that may help is amitriptyline (brand name: Elavil). It blocks pain and reduces bladder spasms. This medicine can make you sleepy, so it's usually taken at bedtime.
Bladder instillation. During a bladder instillation, a catheter (a thin tube) is used to fill your bladder with a liquid medicine. You hold the medicine inside your bladder for a few seconds to 15 minutes. Then the liquid drains out through the catheter. Treatments are given every one to two weeks for six to eight weeks. The treatment can be repeated as needed.
What else can I do to help my symptoms?
Diet. Alcohol, tomatoes, spices, chocolate, caffeine, citrus drinks, artificial sweeteners and acidic foods may irritate your bladder. That makes your symptoms worse. Try removing these foods from your diet for a couple of weeks. Then try eating one food at a time to see if it makes your symptoms worse.
Smoking. Many people with interstitial cystitis find that smoking makes their symptoms worse. Because smoking is also a main cause of bladder cancer, people with interstitial cystitis have another good reason to quit smoking.
Bladder training. Many people can train their bladder to urinate less often. You can train your bladder by going to the bathroom at scheduled times and using relaxation techniques. After a while, you try to make the time you can wait longer. Your doctor can help you with bladder training and relaxation techniques.
Physical therapy and biofeedback. People with interstitial cystitis may have painful spasms of the pelvic floor muscles. If you have muscle spasms, you can learn exercises to help strengthen and relax your pelvic floor muscles.
TENS (this stands for “transcutaneous electrical nerve stimulation”). You can use a TENS machine to put mild electrical pulses into your body through special wires. You would do this at least two times a day. You might do it for a few minutes, or you might do it for a longer time. Some doctors think that electric pulses increase blood flow to the bladder. The increased blood flow strengthens the muscles that help control the bladder. It also releases hormones that block pain. TENS is not expensive.
Where can I get more information about interstitial cystitis?
The support of family, friends and other people with interstitial cystitis is very important to help you cope with this problem. People who learn about interstitial cystitis and participate in their own care do better than people who don't.
People with interstitial cystitis can get more information on this disease from these groups: