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Painful Bladder Syndrome May Elude Diagnosis

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By STUART HART M.D., Tribune Correspondent

Published: January 31, 2008

Iliana, 37, was healthy and in the prime of her life. One morning she awoke with symptoms of what she thought was a simple urinary tract infection. Little did she know at the time that her discomfort was the start of interstitial cystitis (IC) — a lifelong, yet treatable, inflammatory condition of the bladder.

IC affects an estimated 2.5 million women in the United States, and as many as one in five experience mild symptoms of the debilitating condition.

Iliana developed urinary urgency (feeling a constant need to urinate), urinary frequency (voiding more than 10 times during waking hours), nocturia (wakening more than twice to urinate during sleeping hours) and a burning sensation in her pelvic area. Over the next three months she saw several physicians who prescribed different antibiotics, but her symptoms persisted. She received several different diagnoses, including recurrent urinary tract infections, trigonitis and urethritis, although all her tests cane back negative except for a small amount of blood in her urine — a common finding in IC.

Eventually, Iliana was referred to an academic institution for further evaluation, and she began reading extensively about her symptoms on the Internet. She came up with a self-diagnosis — interstitial cystitis, also known as painful bladder syndrome. She underwent a simple outpatient surgical test that demonstrated multiple hemorrhages of the bladder's mucosal wall and confirmed her diagnosis.

Iliana was a national patient advocate for the Interstitial Cystitis Association in the Tampa Bay area. She was diagnosed within one year of the onset of symptoms, making her one of the lucky ones. Most patients see at least five different physicians over several years before getting a definitive diagnosis.

The most common symptoms of IC include urinary urgency and frequency, nocturia, pelvic pain, urethral and/or vulvar pain, and painful intercourse. They can vary over time and may worsen before a women's menstrual cycle, after intercourse, during allergy seasons or periods of stress, and with certain foods.

Because IC symptoms are similar to those of other gynecologic disorders, patients may be inadvertently misdiagnosed with endometriosis, recurrent urinary tract infections, recurrent yeast infections, chronic pelvic pain, vulvodynia, urethritis, trigonitis, pelvic adhesions and overactive bladder. The condition also is associated with other similar syndromes, including irritable bowel syndrome and fibromyalgia. Before a diagnosis is made, other diseases such as bladder cancer and kidney stones should be ruled out.

The primary treatment combines lifestyle modifications (reducing environmental triggers and stress) and the medication Elmiron (pentosan polysulfate sodium). Other therapies may include antihistamines, medication placed in the bladder by catheter for more immediate relief, oral medications that help numb the bladder, and antidepressants and pain medications.

Some patients with long-standing symptoms also may experience muscle pain or spasms in the pelvic muscles called "pelvic floor dysfunction." This condition can be treated with pelvic floor physical therapy and biofeedback. Severe cases can be treated with Botox injections into the pelvic floor muscles.

The Interstitial Cystitis Association (www.ichelp.org), Interstitial Cystitis Network (www.ic-network.com), Alliance for Bladder Control (www.bladder.cc) and National Institute of Diabetes and Digestive and Kidney Diseases (www.niddk.nih.gov/health/urolog/pubs/cystitis/cyst...) offer extensive patient resources.

Hart is an assistant professor of obstetrics and gynecology in the Division of Urogynecology and Pelvic Reconstructive Surgery at USF Health.

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