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A Story of Endometriosis
2/23/2009 - Christine Traxler

Approximately 5.5 million North American women suffer from endometriosis, a painful and puzzling reproductive disease that has no known cause or cure. Endometriosis is near impossible to diagnose without surgery because the symptoms -- pelvic pain, difficult menstrual cycles and bowel problems -- are common and lead to misdiagnoses.

But that may be changing as sufferers tell their stories on the Web and the medical community responds with specialized outlets such as Kaiser Permanente's Center for Pelvic Pain, which recently opened in Martinez, Calif. Also, the disease received national attention late last year when two professionals on the TV show "Dancing With the Stars" told millions of viewers that they suffer from endometriosis.

The disease occurs when endometrial tissue like that which lines the uterus is found outside the uterus and in other parts of the pelvic cavity and body. This misplaced tissue develops into growths that respond to the menstrual cycle in the same way that the tissue of the uterine lining does: Each month it builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving. This results in internal bleeding and inflammation. In addition to inducing chronic pain, endometriosis can cause scar tissue, adhesions and infertility. Still, some women have no symptoms at all. A diagnostic laparoscopy, or surgery, is needed to locate the endometriosis, and, eventually to remove it.

Unfortunately, that is not a cure. Endometrial tissue has a 50 percent reoccurrence rate, according to Andrew Cook, a Los Gatos, Calif., surgeon and reproductive endocrinologist who specializes in pelvic pain disorders. "How well the disease is removed has a lot to do with that rate of reoccurrence," says Cook, adding that he prefers cutting the tissue out over burning it, which is more common. The surgery is technical and very difficult. "This is worse than cancer from an operative perspective," he says. "Endometrial tissue obliterates everything around it."

Still, early detection is possible. Endometriosis is most likely genetic, and stress and a decreased immune system can make women more susceptible to the disease, says Jean Kayser, director of gynecology in the Department of Women's Health at Kaiser in Walnut Creek, Calif.

Two theories persist on the cause. The retrograde menstruation theory suggests that during menstruation some of the menstrual tissue backs up through the fallopian tubes, implants in the abdomen, and grows. Another theory suggests that endometrial tissue is distributed from the uterus to other parts of the body through the blood or lymph systems, Kayser says.

There's nothing that can be done to prevent endometriosis. Women who have symptoms can try to control the disease by having fewer periods, Kayser says, and that means rigorous and prolonged use of birth control pills or even Lupron, an injectable drug that stops the body's production of certain hormones and puts women into early menopause. Cook, the surgeon, isn't a fan of the latter. At the VitalCare Health Institute, where he treats women from 45 states and 10 countries, he favors comprehensive health care -- adjusting diet and lifestyle -- over treating women with drugs such as Lupron.  

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