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October 31 is National Interstitial Cystitis (IC) Awareness Day

First Survey of IC Patients Reveals Frustration Associated with Frequently

Misdiagnosed Condition

WASHINGTON, Oct. 31 /PRNewswire/ -- In observance of the first National Interstitial Cystitis (IC) Awareness Day, the National Association of Nurse Practitioners in Women's Health (NPWH), with support from Ortho Women's Health & Urology, today released the results of the first survey of IC patients highlighting their frustration and despair, along with new educational resources to help women recognize and manage their symptoms.

Results from the survey, available on, showed that respondents expressed very high levels of emotional distress. Nearly all respondents -- 95 percent -- felt frustrated from dealing with IC and its symptoms. Most said they had been annoyed or angry (85 percent), 75 percent reported feeling depressed, and more than two thirds (67 percent) felt alone/isolated and embarrassed.

The Unmasking the Many Faces of IC patient survey fact sheet and video are available at

IC is a painful and often debilitating, chronic condition where the bladder lining becomes irritated and inflamed causing symptoms such as pain in the pelvis, bladder, back or thighs; an increased need to urinate frequently or urgently; and/or pain during/after sexual intercourse. Research indicates that the number of people who have IC may actually be higher than the current estimate of two million Americans since many people are not appropriately diagnosed and continue to face the daily frustrations associated with IC.

"The face of IC is often hidden because its symptoms often masquerade as other pelvic conditions, making it challenging to accurately diagnosis in a timely manner," says Susan Wysocki, President and CEO, National Association of Nurse Practitioners in Women's Health. "It is our hope that National IC Awareness Day will unmask the many faces of IC by elevating awareness about this little-known condition and helping reduce the emotional as well as physical toll that IC can have on patients and families."

IC can be tricky to diagnose because symptoms are easily mistaken for other urologic and gynecologic disorders, such as endometriosis, recurrent urinary tract infections and overactive bladder. As a result, it can take years and numerous visits to multiple healthcare professionals to achieve a correct diagnosis. In the survey, more than half of the respondents (58 percent) said their IC diagnosis took a year or more. More than half (56 percent) also said they had seen three or more healthcare professionals before their diagnosis.

IC Patient Ruthann Auten knows first-hand the frustration of a delayed diagnosis. "I was frustrated and upset by the frequent pain I experienced in my pelvis, and didn't feel well enough to participate in a lot of the activities I used to enjoy," says Ruthann. "It was hard to stay positive during the time it took to diagnose my pain as IC. I felt overwhelmed trying to manage the chronic pain, while finding a doctor who would correctly diagnose me."

There are new resources available on to help people like Ruthann. IC sufferers can see the "Unmasking the Many Faces of IC" collage, read their inspiring testimonials and find an IC specialist in their area. A link to a new patient brochure offers information on the condition and tips to help manage symptoms.

"In addition to suffering from painful physical symptoms, people with IC often experience psychological and social problems. It is sad, but not surprising, to hear that one third of the IC patients in our survey said it had been suggested to them that their condition may be psychological, and one fifth said they had been directed to seek psychological help," says Wysocki. "This survey underscores the need for greater education so that IC is considered earlier in the diagnostic process and women can receive the treatment they need to relieve their painful symptoms."

In the past, IC has traditionally been difficult to detect because there is no definitive test for the condition. However, once diagnosed, it can be successfully managed and symptoms can start to be relieved. A multi-faceted treatment approach may provide the greatest symptom control for people with IC. This approach involves a correct diagnosis, dietary modifications and medical therapies like ELMIRON(R) (pentosan polysulfate sodium), the only FDA-approved oral medication to relieve the bladder pain or discomfort associated with the condition. Other medications, such as therapies to ease and control pain, reduce night-time bathroom visits, aid in sleep, and block the effects of allergens, may also benefit IC patients.

Ortho Women's Health & Urology is a Division of Ortho-McNeil Pharmaceutical, Inc. is published by Ortho-McNeil Pharmaceutical, Inc.

About NPWH

The National Association of Nurse Practitioners in Women's Health was founded in 1980. NPWH's mission is to assure the provision of quality health care to women of all ages by nurse practitioners. To this end, NPWH works with a wide range of individuals and groups within nursing, medicine, the healthcare industry and the women's health community.

About the IC Patient Survey

The "Unmasking the Many Faces of IC" online survey was conducted by KRC Research from September 14 - 28, 2007. A total of 589 self-reported IC patients responded to the survey from a database of patients who had opted in to receive IC-related communications. Nearly all respondents were female (98 percent). The survey was sponsored by Ortho Women's Health & Urology, a division of Ortho-McNeil Pharmaceutical, Inc.


ELMIRON is indicated for the relief of bladder pain or discomfort associated with interstitial cystitis. While the mechanism of action is not fully understood, ELMIRON is thought to adhere to and help reinforce the bladder's protective layer and may act as a buffer, preventing irritants from reaching the bladder wall. A scientific study showed that ELMIRON relieved pain/discomfort in 61 percent of IC patients who continued ELMIRON treatment for three months. Additional patients reported relief of pain/discomfort by six months. Relief is gradual. The clinical value and risks of continued treatment in patients whose pain has not improved by six months is not known.

Important Safety Information

ELMIRON has been shown to be well tolerated. The most common side effects were blood in stool, diarrhea, nausea, hair loss, headache, rash, upset stomach, abdominal pain, liver function abnormalities, and dizziness. When side effects did occur, they were generally mild and usually did not interfere with continuing treatment. Hair loss, when it occurred, was almost always limited to a single area of the scalp, and grew back when ELMIRON was discontinued. ELMIRON is a weak anticoagulant (blood thinner), which may increase bleeding. Call your doctor if you will be undergoing surgery or will begin taking anticoagulant therapy such as warfarin, heparin, high doses of aspirin, or anti-inflammatory drugs such as ibuprofen. For more information about Ortho Women's Health & Urology or full ELMIRON(R) Prescribing Information go to

Contact: Susan Wysocki, President/CEO

National Association of Nurse Practitioners in Women's Health

Tel: 202 543-9693


SOURCE Nurse Practitioners in Women's Health
Copyright©2007 PR Newswire.
All rights reserved

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