What is interstitial cystitis?

Interstitial cystitis is chronic inflammation of the bladder. People who have 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. In some cases, the walls of the bladder may bleed slightly. A few people get sores in the bladder lining. More than 3 million American women and 1 million men have interstitial cystitis.

What are the symptoms of interstitial cystitis?

People who have interstitial cystitis may have the following symptoms:

• An urgent need to urinate, both in the daytime and during the night (yet you may pass only very small amounts of urine each time)
• Pressure, pain and tenderness around the bladder, pelvis and perineum (the area between the anus and vagina or the anus and the 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 used to
• Pain during sexual intercourse
• In men, discomfort or pain in the penis or scrotum

For 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?

Doctors don't know exactly what causes interstitial cystitis. However, they do know that it isn't caused by bacterial or viral infections.

A defect in the lining of the bladder might cause interstitial cystitis. Normally, the lining protects the bladder wall from the toxic effects of urine. In about 70% of the people who have 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?

Your doctor will ask you questions about your medical history. He or she may also ask you to keep track of how much fluid you drink, how often your urinate and how much urine you pass.

Your doctor will rule out other diseases such as urinary tract infections, bladder cancer, endometriosis, kidney stones, sexually transmitted infections, chronic prostatitis in men and vaginal infections in women.

Your doctor may also refer you to a urologist (a doctor whose specialty is problems of the urinary tract). The urologist may use a special scope (called a cytoscope) to look inside your bladder for inflammation, pinpoint bleeding or ulcers. These things could indicate that you have interstitial cystitis.

How is interstitial cystitis treated?

There is no cure for interstitial cystitis. You may need to try several treatments or a combination of treatments before you notice an improvement in 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. Under anesthesia, a doctor overfills your bladder with gas or fluid. This stretches the walls of the bladder. Doctors are not sure exactly why distension helps. It may make your bladder be able to hold more urine. It may also interfere with the pain signals sent by nerves in the bladder.
• Medicine. Your doctor may have you take an oral medicine called pentosan polysulfate. This medicine helps 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. This medicine reduces the amount of histamine that is made in the bladder wall. Another medicine that may help is amitriptyline. It blocks pain and reduces bladder spasms. This medicine can make you sleepy, so it is usually taken at bedtime. Your doctor may also suggest that you take an over-the-counter pain medicine to ease pain.
• Bladder instillation. During a bladder instillation, a catheter (a thin tube) is used to fill your bladder with liquid medicine. You hold the medicine inside your bladder for a few seconds to 15 minutes. Then the liquid is released through urination. 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, carbonated drinks, chocolate, caffeine, citrus fruits and drinks, pickled foods, artificial sweeteners and acidic foods may irritate your bladder. That makes symptoms worse. Try removing these things 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 who have interstitial cystitis find that smoking makes their symptoms worse. Because smoking is also a main cause of bladder cancer, people who have 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.
• Physical therapy and biofeedback. People who have interstitial cystitis may have painful spasms of 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. Some doctors think that electrical 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.
• Support group. You might consider joining a support group. The support of family, friends and other people who have interstitial cystitis can help you cope. People who learn about interstitial cystitis and participate in their own care do better than people who do not. A support group can provide you and your family with helpful tips and additional information.

• How do my symptoms indicate interstitial cystitis, instead of another condition, such as an infection or urinary incontinence?
• Do I need any tests to confirm a diagnosis of interstitial cystitis?
• Will I need to see a specialist?
• What are my treatment options? Which treatment is best for me?
• How can I help manage my symptoms? Will diet changes, bladder training or physical therapy help?