Managing interstitial cystitis

by Elissa Sonnenberg

Valerie Johnson, 47, doesn't paint her fingernails, wear jeans, go running, or ride a bike. And when she goes to church every Sunday, she stays away from the red grape juice offered at communion.

Because she has interstitial cystitis (IC), an inflammatory condition of the bladder wall that is often misdiagnosed, she's learned how to avoid certain acids, chemicals and other irritants that can trigger the painful and sometimes debilitating condition.

More questions than answers surround this chronic condition that mimics the symptoms of an unremitting urinary tract infection (UTI) and cannot be relieved by antibiotic therapy.

What is IC?

Difficult diagnosis

Because potential triggers and the severity of symptoms vary widely in people with IC, diagnosing the condition can be a lengthy and often painstaking process, says Robert Moldwin, MD, assistant professor of urology at the Albert Einstein College of Medicine and director of the Interstitial Cystitis Center in Long Island, New York.

Johnson went through 12 doctors in 11 months before she was diagnosed 10 years ago. According to the ICA, female patients, who account for 90% of IC cases, spend three to seven years in search of an accurate diagnosis.

"I was labeled the 'complicated' patient and treated with disgust," says Johnson. Like many people with IC, she was first diagnosed with a UTI and given a series of antibiotic treatments that didn't relieve her symptoms. After a series of tests came back negative, she was given a clean bill of health, only to be rushed to the emergency room days later because of unbearable bladder pain.

"I was told it was all in my head," she says.

Symptoms

IC is far from only psychosomatic, says Dr. Moldwin, author of The Interstitial Cystitis Survival Guide. The symptoms can include some or all of the following:

• Frequent urination – Increased frequency can plague IC patients day and night. Patients with severe cases may go to the bathroom as many as 60 times a day, while those with mild IC may be able to sleep through the night without interruption.
• Urgent urination –Near constant urgency is common among IC patients, who may also experience painful bladder spasms.
• Pain – Pain in the pelvic area, bladder, urethra or vagina may be constant and intense or come and go in waves.
• Other chronic conditions – Conditions such as irritable bowel syndrome and fibromyalgia commonly co-exist with IC, although any connection between these conditions and IC remains unclear. While IC patients have a higher rate of depression and other psychological disorders, these conditions do not consistently appear before their urinary symptoms. This suggests that the psychological disorders may be a result rather than a cause of IC.

Diagnostic tests

Before diagnosing IC, doctors must rule out other conditions that can lead to similar symptoms, such as UTIs, vaginal infections, sexually transmitted diseases, endometriosis and bladder cancer, to name a few. Most urologists diagnose IC only after performing a cystoscopy a procedure in which the urologist inserts an endoscope through the urethra and into the bladder to examine the bladder lining for hemorrhages, ulcers and other signs of inflammation.

Even with this procedure, IC can be missed unless urologists distend the bladder, or fill it with water, so that they can clearly view all areas of the bladder lining. Stretching the wall of an inflamed bladder is often painful during and immediately after the procedure. Many IC patients, however, report an improvement in their symptoms soon after that may last several months.

Unknown cause

The exact cause of IC remains unknown, but researchers continue to investigate multiple possibilities.

Dr. Moldwin believes that genetics likely play a part. IC patients may have a more exaggerated inflammatory response to irritants in their urine. Another possibility is that genetic differences in their nervous systems may make them more vulnerable to chronic pain originating in the bladder.

Another theory is that previous bacterial bladder infections set the stage for the development of IC by disrupting the mucosal lining.

A variety of treatment methods

No matter what causes or triggers IC, doctors agree that no single treatment plan provides relief for all patients. The ICA’s most current treatment guidelines cover a wide range of options, including:

• Diet and lifestyle – may help control symptoms and avoid flare-ups, but no specific recommendations can be made for everyone.
• Antidepressants – may help relieve pain and decrease urinary frequency, as well as help ease depression that can result after months and years of living with IC.
• Antihistamines – may act as sedatives and reduce anxiety as well as inhibit growth of cells in the bladder that cause inflammation.
• Elmiron – this is the only medication approved by FDA for treating IC. It may help coat and protect damaged bladder walls.
• Pain medications – (over-the-counter or prescription) may make symptoms more manageable and improve quality of life.
• Direct instillation of liquid treatments into the bladder – may relieve most intense symptoms, at least temporarily.
• Laser surgery – may help relieve pain in IC patients with ulcerated bladders only.

The physical and emotional toll

The constancy of pain and lack of general awareness of IC make everyday life a challenge for people with the condition, who usually discover triggers and effective treatments by trial and error.

"It's enough to make you tear your hair out and jump off a bridge," says ICA founder Vicki Ratner, MD, who developed the condition while in medical school and saw 14 doctors in two years before being diagnosed.

"There has not been a part of my life that it has not affected," adds Johnson. Painful intercourse, a common IC side effect, took a toll on her otherwise healthy marriage. IC symptoms kept her away from her two daughters' school functions and the steady work she enjoyed. She followed a strict diet, quit running and riding bicycles, bought loose, cotton clothing and memorized bathroom locations everywhere she went.

In addition to their personal struggles, IC patients may encounter skeptical doctors, some of them urologists, who don't believe IC exists.

"You're told all the time that you don't have something, but you're experiencing pain," says uro-gynecologist Larrian Gillespie, MD, author of You Don't Have to Live with Cystitis.

Taking control

Dr. Gillespie recognizes the difficulty IC patients face obtaining the care they need.

She advises patients to do the following:

• Believe in yourself and your symptoms and persevere until you find a doctor who is willing to listen to you.
• Objectively list your symptoms, possible triggers, aggravating conditions, and anything that appears to relieve your IC. Keeping a written log is essential.
• Do your best to take emotion out of the equation when you talk to your doctor.
• Make dietary and lifestyle adjustments in an effort to determine what most improves your quality of life.
• Steer clear of any doctor who wants to remove your bladder, a surgical "last resort" with serious complications that often doesn't relieve IC symptoms.
• Find education, support and encouragement in books, the web, or in your local community.

"You have to get out of the victim mode and start doing positive things for yourself," Dr. Gillespie maintains.

Fortunately, new research continues to offer hope for the discovery of more effective treatments for IC, according to Dr. Moldwin. "Every year, we're getting new therapies," he says. "Over time, we're developing better treatment strategies."

Alternative therapies