Diseases & Conditions

Interstitial cystitis

Interstitial cystitis — also called painful bladder syndrome — is a chronic condition characterized by a combination of uncomfortable bladder pressure, bladder pain and sometimes pain in your pelvis, which can range from mild burning or discomfort to severe pain.

Interstitial cystitis is a chronic condition that affects an estimated 1 million Americans. While it can affect children and men, most of those affected are women. Interstitial cystitis can have a long-lasting adverse impact on your quality of life.

The severity of symptoms caused by interstitial cystitis often fluctuates, and some people may experience periods of remission. Although there's no treatment that reliably eliminates interstitial cystitis, a variety of medications and other therapies offer relief.

The signs and symptoms of interstitial cystitis vary from person to person. If you have interstitial cystitis, your symptoms may also vary over time, periodically flaring in response to common triggers such as menstruation, seasonal allergies, stress and sexual activity.

Interstitial cystitis symptoms include:

• A persistent, urgent need to urinate.
• Frequent urination, often of small amounts, throughout the day and night. People with severe interstitial cystitis may urinate as often as 60 times a day.
• Pain in your pelvis (suprapubic) or between the vagina and anus in women or the scrotum and anus in men (perineal).
• Pelvic pain during sexual intercourse. Men may also experience painful ejaculation.
• Chronic pelvic pain.

Some people affected by interstitial cystitis experience only pain, and some experience only frequent, urgent urination. Most affected people, however, experience both pain and frequent, urgent urination.

Although signs and symptoms of interstitial cystitis may resemble those of a chronic urinary tract infection, urine cultures are usually free of bacteria. However, a worsening of symptoms may occur if a person with interstitial cystitis gets a urinary tract infection.

When to see a doctor
If you're experiencing chronic bladder pain or urinary urgency and frequency, contact your doctor.

Your bladder is a hollow, muscular, balloon-shaped organ that stores urine until you're ready to empty it. In adults the bladder expands until it's full and then signals the brain that it's time to urinate, by communicating through the pelvic nerves. This creates the urge to urinate in most people. With interstitial cystitis, these signals somehow get mixed up, and you feel the need to urinate more often and with smaller volumes of urine than most people.

It's likely that many people with interstitial cystitis also have a defect in the protective lining (epithelium) of their bladder. A leak in the epithelium, for example, may allow toxic substances in urine to irritate your bladder wall.

Suggested but unproven factors that may contribute to interstitial cystitis include an autoimmune reaction, heredity, infection or allergy.

It can be difficult to detect interstitial cystitis because its signs and symptoms resemble those of other disorders.

To diagnose interstitial cystitis, your doctor will take your medical history and ask you to describe your symptoms. Your doctor may also request that you keep a bladder diary, recording the volume you drink and the volume of urine you pass. This information can be very useful for diagnosing interstitial cystitis.

Because urinary frequency and lower abdominal pain have many possible causes, your doctor needs to perform tests to rule out other conditions such as urinary tract infection, kidney stones, bladder cancer, sexually transmitted diseases, endometriosis, and vaginal infection in women or prostatitis in men.

Tests used to diagnose interstitial cystitis may include:

• Complete pelvic exam. During this exam, your doctor examines your external genitals, vagina and cervix and feels (palpates) your internal pelvic organs. Your doctor may also examine your anus and rectum.
• Urine test. A sample of your urine will be analyzed for evidence of a urinary tract infection.
• Potassium sensitivity test. In this test, your doctor places two solutions — water and potassium chloride — into your bladder one at a time. You're asked to rate on a scale of 0 to 5 the pain and urgency you feel after each solution is instilled. If you feel noticeably more pain or urgency with the potassium solution than with the water, your doctor may diagnose interstitial cystitis. People with normal bladders can't tell the difference between the two solutions.
• Cystoscopy. Doctors sometimes use this test to rule out other causes of bladder pain. Cystoscopy involves an examination of your bladder through a thin tube with a tiny camera (cystoscope) inserted through the urethra. Cystoscopy allows your doctor to see the lining of your bladder. In conjunction with cystocopy, your doctor may instill a liquid into your bladder to help measure your bladder capacity. This procedure, called cystodistension, is generally performed with anesthetics to reduce discomfort.
• Biopsy. During cystoscopy under anesthesia, your doctor may remove a sample of tissue (biopsy) from the bladder and the urethra for examination under a microscope. This is to check for bladder cancer and other rare causes of bladder pain.

Researchers are looking to develop tests that will help confirm the diagnosis of interstitial cystitis without an invasive procedure.

Sample Bladder Diary (PDF file requiring Adobe Reader)

No simple treatment exists to eliminate the signs and symptoms of interstitial cystitis, and no one treatment works for everyone. You may need to try various treatments or combinations of treatments before you find an approach that relieves your symptoms.

Oral medications
Oral medications that may improve the signs and symptoms of interstitial cystitis include:

• Ibuprofen (Advil, Motrin, others) and other nonsteroidal anti-inflammatory drugs, to relieve pain.
• Tricyclic antidepressants, such as amitriptyline or imipramine (Tofranil), to help relax your bladder and block pain.
• Antihistamines, such as diphenhydramine (Benadryl, others) and loratadine (Claritin, others), which may reduce urinary urgency and frequency and relieve other symptoms.

Your doctor may also prescribe an oral medication, pentosan (Elmiron), the only oral drug approved by the Food and Drug Administration specifically for interstitial cystitis. How it works is unknown, but it may restore the inner surface of the bladder, which protects the bladder wall from substances in urine that could irritate it. It may take two to four months before you begin to feel pain relief and up to six months to experience a decrease in urinary frequency. Side effects include minor gastrointestinal disturbances and possible hair loss, which reverses when you stop taking the drug. Make sure your doctor knows if you're pregnant or planning to become pregnant before taking pentosan.

Nerve stimulation
Transcutaneous electrical nerve stimulation (TENS) uses mild electrical pulses to relieve pelvic pain and, in some cases, reduce urinary frequency. Electrical wires are placed on your lower back or just above your pubic area, and pulses are administered for minutes or hours, two or more times a day, depending on the length and frequency of therapy that works best for you. In some cases a TENS device may be inserted into a woman's vagina or a man's rectum.

Scientists believe that TENS may relieve pain and urinary frequency associated with interstitial cystitis by increasing blood flow to the bladder, strengthening the muscles that help control the bladder or triggering the release of substances that block pain.

Another possible nerve stimulation treatment is sacral nerve stimulation. Modulation of your sacral nerves — a primary link between the spinal cord and nerves in your bladder — may reduce feelings of urinary urgency that accompany interstitial cystitis. With sacral nerve stimulation, a thin wire placed near the sacral nerves delivers electrical impulses to your bladder, similar to what a pacemaker does for the heart. If the procedure successfully lessens your symptoms, a permanent device may be surgically implanted.

Bladder distention
Some people notice a temporary improvement in symptoms after undergoing cystoscopy with bladder distention. Bladder distention is the stretching of the bladder with water or gas. The procedure may be repeated as a treatment if the response is long lasting.

Medications instilled into the bladder
In bladder instillation, the prescription medication dimethyl sulfoxide, or DMSO, (Rimso-50) is placed into your bladder through a thin, flexible tube (catheter) inserted through the urethra. The solution sometimes is mixed with other medications, such as a local anesthetic. After remaining in your bladder for 15 minutes, the solution is expelled through urination. Delivering DMSO directly to your bladder may reduce inflammation and possibly prevent muscle contractions that cause frequency, urgency and pain.

Your doctor may initially perform DMSO treatment weekly for six to eight weeks, and then perform maintenance treatments as needed — often, every couple of weeks — for up to one year.

A garlic-like taste and odor may last up to 72 hours after treatment. DMSO can affect your liver, so your doctor may monitor your liver function with blood tests. For some people, this procedure may be painful or it may worsen symptoms. Talk with your doctor about other treatment options if this happens to you.

A newer approach to bladder instillation includes using a solution that contains a trio of medications: heparin, lidocaine and sodium bicarbonate. This combination of drugs instilled directly into the bladder significantly relieved urinary pain and urgency in the majority of people participating in a clinical trial.

Surgery
Doctors rarely use surgery as interstitial cystitis treatment because removal of part or all of the bladder doesn't relieve pain and can lead to other complications. People with severe pain and people whose bladders can hold only very small volumes of urine are possible candidates for surgery, but even then surgery is usually considered only after other treatments have failed. Surgical options include:

• Bladder augmentation. In this procedure, surgeons remove the damaged portion of the bladder and replace it with a piece of the colon, but the pain still remains and some women need to empty their bladders with a catheter multiple times a day.
• Fulguration. This minimally invasive method involves insertion of instruments through the urethra to burn off ulcers that may be present with interstitial cystitis.
• Resection. This is another minimally invasive method that involves insertion of instruments through the urethra to cut around any ulcers.

Fulguration and resection are not always effective and could potentially worsen your symptoms.