Endometriosis Association Offers Informational Resources

Posted: Oct. 1, 2004

By conservative estimates, according to the Endometriosis Association, five million women and girls in the U.S. suffer from endometriosis. Accurate diagnosis historically has been poor, so it is not known whether the number of cases is increasing.

“We’re more aware of it in the U.S. (than in other countries), but still about only 20 percent of women with it are diagnosed,” said President and Executive Director Mary Lou Ballweg.

Many calls received at the Endometriosis Association, an international non-profit organization based in Milwaukee, are from women whose hysterectomies already have been scheduled. For a large percentage, it will be the first time they learn about other treatment options such as nutritional changes, immunotherapy or specialized minimally invasive surgery.

In any treatment for endometriosis, Ballweg suggests a woman determine if her doctor specializes in the disease. One key question, if a hysterectomy is prescribed, is to ask exactly what will be done in the surgery. If the doctor is only removing the uterus and ovaries, but not any outlying endometriosis (on the bladder or bowel, for instance), he or she “probably is not an endometriosis specialist,” she said.

Questions to ask
Does the prospective surgeon really seem to listen to the patient? Does he or she say the only way to address the procedure is through major abdominal surgery? These and other questions to ask of one’s gynecologist can be found in sourcebooks published by the Endometriosis Association: “Overcoming Endometriosis, The Endometriosis Sourcebook” and “Endometriosis: The Complete Reference for Taking Charge of Your Health.”

For additional information, visit the Endometriosis Association’s Web site at www.EndometriosisAssn.org or call (414) 355-2200 (toll free 1-800-992-3636).

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