Public Release: 

Women report chronic pelvic pain not taken seriously, survey shows

More than half of sufferers report severe to unbearable pain

Ogilvy Public Relations

SEATTLE, October 14, 2002--A majority of women who suffer from chronic pelvic pain have been told that their pain is "normal" or even exaggerated despite their own perception of it as severe and debilitating. Ironically, these comments are coming from the people they rely on most for support--their physicians, families and friends--according to a survey conducted by the Endometriosis Association and released here at the 58th Annual Meeting of the American Society for Reproductive Medicine.

The survey found that 40 percent of women who suffer from chronic pelvic pain due to endometriosis or the formation of post-surgical scar tissue have been told they exaggerate their pain. More than half (52%) were told this by their Obstetrician/Gynecologist (Ob/Gyn) and 43 percent by a friend or family member. Nearly 60 percent of these women have been told that their pain is normal. Of these, 56 percent were told this by their Ob/Gyn and 29 percent by family or friends.

"The results of this survey are concerning given the impact pelvic pain can have on a woman's life," said Mary Lou Ballweg, president and executive director of the Endometriosis Association, who announced the data. "On a regular basis, we see women completely alter their lives because of the debilitating effects of pelvic pain. The frustrating part is that it often takes years for women to receive a diagnosis, and by then, many are unable to work or fully participate in normal activities."

In fact, 43 percent of women surveyed describe their pain as constant. More than half describe the intensity of pain as severe to unbearable (26% say it's severe, 18% say very severe, and 9% say unbearable). At this level of pain, it's not surprising that more than 80 percent say they have been unable to work at times due to pelvic pain, and 45 percent say they have been debilitated for two-to-three days or longer each month.

"Chronic pelvic pain accounts for 12 percent of hysterectomies and 40 percent of laparoscopic surgeries. The total costs of treating chronic pelvic pain are more than $2 billion each year," said Dr. Charles Miller, reproductive endocrinologist, gynecological surgeon and medical director of Specialists in Reproductive Health in Arlington Heights and Naperville, IL. "As I've seen with many patients and with this survey, chronic pelvic pain also exacts a significant emotional toll, which makes it even more important that women speak to a doctor at the first signs of pelvic pain."

The Endometriosis Association offers diagnostic kits, information about choosing the right physician, and other educational literature to help shorten the time between onset of symptoms and an accurate diagnosis (www.KillerCramps.org or 1-800-992-3636).

The survey of 968 women ages 15 through 59 with endometriosis and/or post surgical scar tissue was designed to uncover specific information about women's experiences with chronic pelvic pain. The survey, conducted by The Endometriosis Association, was co-sponsored through a restricted educational grant by GYNECARE, the women's health division of ETHICON, a Johnson & Johnson company, and Purdue Pharma L.P.

Women with Endometriosis at Increased Risk for Pelvic Pain

Two of the leading causes of chronic pelvic pain are endometriosis and the formation of post surgical scar tissue, also called adhesions. Of the women surveyed, 89 percent had endometriosis, and nearly 40 percent had been diagnosed with adhesions.

Endometriosis is an immune and hormonal disease that impacts 5 million women and girls in the U.S. It occurs when tissue similar to the lining of the uterus (called the endometrium) is found outside the uterus, usually in the abdomen, on the ovaries, or on fallopian tubes.

This misplaced tissue develops into growths or lesions and responds to the menstrual cycle in the same way as the uterine lining: each month the tissue builds up, breaks down, and sheds. But, unlike normal uterine tissue that leaves the body during menstruation, this tissue outside the uterus has no way of leaving the body, and often results in severe menstrual cramping, pelvic pain, internal bleeding, scar tissue, and other complications, including infertility.

Post-surgical adhesions are abnormal bands of scar tissue that form inside the pelvis after gynecologic surgery. Endometriosis can also cause adhesions. This scar tissue, and endometriosis itself, are among the leading causes of pelvic pain, infertility, small bowel obstruction and the need for repeat surgery. As many as 90 percent of the three million women who undergo gynecological surgery each year to treat common female health problems such as ovarian cysts, fibroids and endometriosis, will develop adhesions.

Ironically, women who undergo pelvic surgery to correct endometriosis or to remove adhesions (a procedure called adhesiolysis) are at risk for developing pelvic pain from new formations of pelvic adhesions.

However, new treatments are available to help stop the recurring cycle of pelvic pain. A variety of treatments can help treat pain due to endometriosis, and doctors now have tools to help reduce the risk of adhesion development after surgery to treat endometriosis or remove adhesions. Women should proactively talk with their physicians about chronic pelvic pain, its underlying causes and how it can be treated, or even prevented, in some cases.

###

About the Endometriosis Association

The Endometriosis Association, founded in 1980, is a nonprofit, self-help organization of women and girls with endometriosis and their families, physicians, scientists, and others interested in the disease. The Association provides support for those affected by endometriosis, education about the disease, and related research.

The Endometriosis Association is the first organization in the world to address the support and education needs of women with endometriosis and to carry out an ongoing research program. The Association, which maintains its international headquarters in Milwaukee, WI, has more than 250 chapters and support groups and members in 66 countries.

For more information about pelvic pain, contact the Endometriosis Association at 1-800-992-3636 or www.EndometriosisAssn.org.

Additional contact information:
Amy Towery
Ogilvy Public Relations
212-880-5343
201-759-6763

Fay Campbell
Endometriosis Association
414-355-2200

Disclaimer: AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert system.