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.
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 constant urinary tract infection (UTI).
According to the Interstitial Cystitis Association (ICA), a disruption in the lining of the bladder wall causes varying degrees of inflammation, often resulting in tiny hemorrhages (90% of cases) or larger ulcerations (5-10% of cases). These lesions allow acids in urine to burn through the wall, resulting in intense and near constant pain. In rare cases, symptoms exist even though the bladder appears completely normal.
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.
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:
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.
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.
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:
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.
Dr. Gillespie recognizes the difficulty IC patients face obtaining the care they need.
She advises patients to do the following:
"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."
Some patients with chronic pain syndromes such as IC, respond to acupuncture, biofeedback, and other non-conventional treatments, though there is little scientific evidence to support their effectiveness.
RESOURCES:
Intercyst.org
http://www.intercyst.org
Interstitial Cystitis Association
http://www.ichelp.org
CANADIAN RESOURCES:
Canadian Urological Association
http://www.cua.org/
Women's Health Matters
http://www.womenshealthmatters.ca/index.cfm
References
The Interstitial Cystitis Survival Guide. New Harbinger Publications; 2000.
You don't have to live with Cystitis. Avon Books; 1996.
Intercyst.org website. Available at: http://www.intercyst.org.
Last reviewed February 2008 by Miguel Antelo, MD
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.
Copyright © 2007 EBSCO Publishing All rights reserved.