Interstitial cystitis: New program enhances awareness of thisdisease

How much do you know of the condition known as interstitial cystitis (IC)? Apparently, not many people know much about it, which is why the Centers for Disease Control & Prevention recently announced plans to fund a five-year program with the Interstitial Cystitis Association (ICA). The program is intended to provide IC education for both healthcare professionals and the general public.

Changes in bladder permeability are thought to play a role in interstitial cystitis. In the healthy bladder, the epithelial layer is covered with a mucopolysaccharide lining known as glucosaminoglycan. Glucosaminoglycan prevents irritating components of the urine, including urea and potassium, from coming in contact with the sensitive epithelium. If the glucosaminoglycan layer is damaged, urea and potassium will irritate the epithelium, causing tissue damage and pain.

Interstitial cystitis primarily afflicts women, but diagnosis in men is increasing. Most male patients and half of female patients are diagnosed after the age of 40, while 25% of female patients are diagnosed before the age of 30.

According to Susan Wysocki, RNC, NP, president of the National Association of Nurse Practitioners in Women's Health (NPWH), interstitial cystitis can cause excruciating pain. She has heard patients describe the pain as if there were "paper cuts in my bladder." Symptoms of interstitial cystitis may come and go, with flare-ups often associated with menstruation, certain foods, allergies, or stress. Interstitial cystitis can cause pain or pressure in the pelvic area, particularly during or after intercourse. Patients experience frequent and painful urination, often urinating 16 to 60 times a day, compared with the usual six to seven times daily. These patients feel the urge to urinate even after emptying the bladder, and they experience a frequent need for nocturnal urination.

Karen Pilliod, a public health analyst in the division of adult and community health at the CDC National Center for Chronic Disease Prevention and Health Promotion, explained that CDC was directed by Congress to work with ICA to "support activities targeted at disseminating information regarding IC identification, diagnosis, and support services for both families and healthcare providers." The two organizations will work as partners to "implement a multimedia campaign to educate the public, healthcare providers, and interstitial cystitis patients about IC, including its symptoms, impact, and treatment." ICA, a nonprofit organization, was founded in 1984 by Vicki Ratner, M.D., after she herself developed IC in medical school.

According to Libby Mullin, director of government affairs for ICA, the association is currently in an information-gathering phase of the campaign. It is interviewing "healthcare practitioners and women with IC and IC symptoms to find out how to reach IC sufferers and what messages will resonate best." During the first year of the campaign, the ICA is revamping its Web site to make it a "go-to resource for all things IC, from patient treatment guidelines to advancing research to providing up-to-date provider information."

Although previous estimates suggested approximately 500,000 individuals in the United States have IC, a recent study published in Women's Health Care: A Practical Journal for Nurse Practitioners indicates that IC may be even more common. The study evaluated the prevalence of IC in 1,600 nurse practitioners. The nurses completed a symptom-based questionnaire known as Pelvic Pain and Urgency/Frequency (PUF). The PUF questionnaire measures the presence and degree of symptoms, using a scale of 1 to 35. A score of 15 or higher suggests likely IC. Six percent of study participants received a score of 15 or higher, indicating the likelihood of IC.

According to Wysocki, author of the study, the development of the PUF questionnaire prompted her to ask, "What have we been missing?" By utilizing the questionnaire, she learned that the prevalence in a healthy, working female population was no different from that in the general population. Despite the millions of women who suffer from chronic pelvic pain, many women remain without resolution from this pain since their complaints are "rationalized away."

Wysocki said IC is an area of women's health that many healthcare providers know very little about. As a women's healthcare provider for more than 30 years, Wysocki admitted that she herself knew very little about the condition before beginning the study. Her association continues to focus on educating nurse practitioners to the condition by providing workshops examining differential diagnoses related to chronic pelvic pain.

ICA's Mullin agrees that "clinicians don't know enough about IC to diagnose it immediately, and patients are left in chronic pain without a diagnosis or proper treatment for years." ICA hopes the new CDC-funded campaign will change that. "By reaching out to healthcare providers and women ages 25 to 54," Mullin said, "ICA, along with the CDC, will equip the medical profession and the patient with the resources to be better informed about an often mysterious and terribly painful disease."

THE AUTHOR is a clinical writer and faculty member based in Connecticut.