What is interstitial cystitis?

Interstitial cystitis (IC) is an inflamed or irritated bladder wall. It can lead to scarring and stiffening of the bladder. The bladder can’t hold as much urine as it did in the past. It is a chronic disorder. IC may also be known as:

• Painful bladder syndrome

• Frequency-urgency-dysuria syndrome

What causes interstitial cystitis?

Experts don't know what causes interstitial cystitis (IC). Researchers are looking at many theories to understand the causes of IC and find the best treatments.

Most people with IC find that certain foods make their symptoms worse. These include:

• Citrus fruits

• Tomatoes

• Chocolate

• Coffee

• Potassium-rich foods

• Alcohol

• Caffeinated drinks

• Spicy foods

• Some carbonated drinks

What are the symptoms of interstitial cystitis?

These are the most common symptoms of interstitial cystitis (IC):

• Frequent urination

• Urgency with urination

• Feelings of pressure, pain, and soreness around the bladder, pelvis, and the area between the anus and vagina or anus and scrotum (perineum)

• Pain during sex

• In men, discomfort or pain in the penis and scrotum

• In women, symptoms may get worse around their period

Stress may also make symptoms worse, but stress does not cause symptoms.

The symptoms of IC may look like other conditions or health problems. Always talk with a healthcare provider for a diagnosis.

How is interstitial cystitis diagnosed?

No single test can diagnose IC. And symptoms of IC are a lot like those of other urinary disorders. For these reasons, a variety of tests may be needed to rule out other problems. Your healthcare provider will start by reviewing your health history and doing a physical exam. Other tests may include:

• Urinalysis. Lab testing of urine to look for certain cells and chemicals. This includes red and white blood cells, germs, or too much protein.

• Urine culture and cytology. Collecting and checking urine for white blood cells and bacteria. Also, if present, what kind of bacteria there are in the urine.

• Cystoscopy. A thin, flexible tube and viewing device is put in through the urethra. It examines the bladder and other parts of the urinary tract. This test checks for structural changes or blockages.

• Bladder wall biopsy. Tissue samples are removed from the bladder (with a needle or during surgery). They are checked under a microscope to see if cancer or other abnormal cells are present.

• Lab exam of prostate secretions (in men). This is done to look for prostate inflammation or infection.

How is interstitial cystitis treated?

There is no cure for IC and it can be hard to treat. Treatments are aimed at easing symptoms, and may include:

• Bladder enlargement. This method increases bladder capacity. It also interferes with pain signals being sent by the nerve cells in the bladder.

• Bladder wash. The bladder is filled with a solution that is held for varying times, from a few seconds to 15 minutes. Then it is drained out through a catheter.

• Medicine. Medicine may be taken by mouth or put right into the bladder. There are many different medicines that may be used.

• Transcutaneous electrical nerve stimulation (TENS). Mild electric pulses enter the body for minutes to hours. This is done 2 or more times a day. The pulses are sent through wires placed on the lower back. Or through special devices put into the vagina in women or into the rectum in men. For some people, TENS eases bladder pain and urinary frequency and urgency.

• Sacral nerve stimulation. This is a permanent implant similar to a TENS unit to calm the nerves that lead to the bladder. This is to reduce the frequency, urgency, and having to get up in the middle of the night to pee (nocturia) related to IC.

• Botox. Botox can be injected into the bladder wall through a cystoscope. This will slow muscle activity to allow the bladder to store more urine. This reduces frequency, urgency, and nocturia.

• Bladder training.  You urinate at certain times and use relaxation methods and distractions to help keep to the schedule. Over time, you try to lengthen the time between the scheduled urinations.

• Surgery. Surgery to remove all or part of the bladder may be done in severe cases, if other treatments don't work.

Management of IC may also include:

• Diet changes. No proof links diet to IC, but some believe that alcohol, tomatoes, spices, chocolate, caffeinated and citrus drinks, and high-acid foods may contribute to bladder inflammation. Removing these from the diet may help to decrease some symptoms.

• Physical therapy (PT). Some people with interstitial cystitis can have painful spasms of pelvic floor muscles. In PT, specific muscle exercises can be learned to help strengthen and relax pelvic floor muscles.

• Not smoking. Many people with IC find that smoking makes their symptoms worse.

• Exercise. Exercise may help ease symptoms or make them stop for a while.

• Reducing stress. There is no proof that stress causes IC. But if a person has IC, stress can make the symptoms worse.

Talk with a healthcare provider about any questions or concerns you may have.

Key points about interstitial cystitis

• Interstitial cystitis (IC) is an inflamed or irritated bladder wall.

• Experts don't know what causes IC. It does not get better with antibiotics.

• Symptoms include pain during sex and frequent and urgent urination. There may also be pressure, pain, and soreness around the bladder, pelvis, and the area between the anus and vagina (women) or the anus and scrotum (men).

• There is no best way to diagnose IC. A variety of tests may be needed. These include urine tests, imaging tests, and biopsy.

• Treatments are aimed at easing symptoms. A variety of procedures, medicines, and lifestyle changes may be advised.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

• Know the reason for your visit and what you want to happen.

• Before your visit, write down questions you want answered.

• Bring someone with you to help you ask questions and remember what your provider tells you.

• At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.

• Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.

• Ask if your condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if you do not take the medicine or have the test or procedure.

• If you have a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your provider if you have questions.