Health Matters Fact Sheets – Interstitial Cystitis/Painful Bladder Syndrome

(Updated April 2008; Also available in Spanish)

What is interstitial cystitis/painful bladder syndrome?

Interstitial cystitis (pronounced in-ter-stish-uh-l si-stahy-tis)/painful bladder syndrome—called IC/PBS for short—is a medical condition that affects the urinary tract. It can cause bladder pain and a feeling that you have to urinate often. Many people with IC/PBS have a hard time sleeping well, working, and enjoying a normal sex life. There’s no cure for IC/PBS, but there are things you can do to relieve symptoms.

What are the symptoms of IC/PBS?

Symptoms vary from person to person and over time. Some people with IC/PBS have only pain or discomfort.

With IC/PBS you may feel:

• Pressure or pain in your lower abdomen. The pain can range from mild to severe. It may get worse as your bladder fills up. It may feel better as you urinate. You may feel pain when you have sex.
• As if you have to urinate very often. When you do urinate, you may pass only a small amount of urine. Some people who have IC/PBS urinate up to 50 times in 24 hours. They also may wake up often to urinate.
• A constant feeling that you need to urinate. This feeling is called persistent urgency. Pain or discomfort in the lower abdomen usually makes it worse.

What causes IC/PBS?

The cause of IC/PBS is not known.

Are some people more likely to have IC/PBS than others?

Yes. IC/PBS can occur at any age, but it is most common in people ages 30 to 50. It affects more women than men. People may be more likely to develop IC/PBS if they’ve had a urinary infection. People may be more likely to have IC/PBS if they have a family member with IC/PBS.

How is IC/PBS diagnosed?

IC/PBS can be hard to diagnose. Two other conditions—overactive bladder and urinary tract infection—can cause symptoms similar to those of IC/PBS. It’s common for people who have IC/PBS to feel as if they have a urinary tract infection. To diagnose IC/PBS, tests are done to rule out other conditions.

To diagnose IC/PBS, your health care professional (doctor, nurse practitioner, physician assistant, midwife) should take your medical history, do a physical exam, and look at your test results.

Medical History

Your health care professional should know about:

• Your urinary problems and pain or pressure in your abdomen. You may be asked to write down how much liquid you drink, and how much and how often you urinate during the day.
• Any medicines you’re taking. That includes vitamins and non-prescription medicines.
• Any other illnesses or conditions such as a recent bladder infection.
• Your overall health.
• Family history of bladder conditions.

Physical Exam

To diagnose a patient with IC/PBS, health professionals will likely give women a pelvic exam, and give men a rectal exam.

Tests

Urine tests and cystoscopy are the most common tests used to help diagnose IC/PBS.

Urine test. You leave a urine sample, and a lab analyzes it.

Cystoscopy. During this test, a health care professional inserts a thin tube with a tiny camera on the end (cystoscope) into your bladder. The test lets the health care professional see inside your bladder.

Sometimes, the health care professional also will push water through the tube to fill your bladder. This is done to see how much liquid your bladder can hold. The health care professional will give you anesthesia before the test to reduce discomfort.

Who should diagnose and treat my IC/PBS?

Your health care professional can help diagnose and treat your IC/PBS. That person also may refer you to a specialist—someone who has specific training in conditions like IC/PBS. A specialist may be a urologist, gynecologist, or urogynecologist.

How is IC/PBS treated?

Treatments include self-help methods such as changes in your diet, and medical methods such as medicines and procedures. In rare cases, surgery is done.

Avoid foods and drinks that may make your symptoms worse. Try removing all these things from your diet for a couple of weeks. Then add in one food or drink at a time to see if it makes your symptoms worse.

Train yourself to urinate less often once you have your pain under control. You can do this by urinating at set times during the day and slowly increasing the time between urinating. Methods that help you relax, such as meditation, can help with this goal.

Explore other self-help methods:

• Try gentle exercises such as low-impact aerobics, walking, and yoga.
• Learn ways to control your stress. Relaxation methods, meditation, massage, and counseling are a few things you can try.
• Relieve your pain by sitting in warm water (enough to cover your hips). Or use a cold pack or hot water bottle—in the area around the vagina for women and in the groin area for men.
• Try methods such as acupressure, acupuncture, and biofeedback.
• See a physical therapist who is an expert in treating pelvic pain.
• Wear comfortable, loose clothing.
• Explore different positions during sex. If sex is painful, use a vaginal lubricant (such as K-Y Jelly, Astroglide, or others).

When self-help methods aren’t enough:

When self-help methods aren’t enough, your health care professional can work with you to provide medicines or procedures that may help.

Medicines. Oral prescription medicines can help relieve symptoms.

Procedures. Two common procedures are (1) stretching the bladder and (2) bathing the inside of the bladder with medicine (also called ‘intravesical instillations’). Both involve gently pushing fluid or medicine through a thin tube (catheter) inserted into your bladder. The bathing method is repeated as often as every week for 6 to 8 weeks. Together, you and your health care professional can decide the best schedule for you.

Where can I get more information?

Interstitial Cystitis Association (ICA)
Web site: http://www.ichelp.org
Toll-free phone number: (800) HELP-ICA