Endometriosis Researchers Share Data, Unknowns

(WOMENSENEWS)–By the age of 22, Misti-Rae Balderas may need a hysterectomy.

But first, this 21-year-old college student will try to have a child.

At 18, Balderas was diagnosed with endometriosis, which causes endometrial tissue normally found in the uterus to grow outside the womb and bleed with each monthly period. Today, she has such a severe case of the condition that doctors recommend she have a hysterectomy within the next year to treat her unbearable abdominal pain.

"My boyfriend and I hadn’t planned to get married or have children until our mid- to late- 20s," says Balderas, a Houston resident. "But we’d rather try now than never have children at all."

Endometriosis, which affects an estimated 10 percent of U.S. women, causes blood shed by misplaced endometrial tissue to become trapped in the pelvis or abdomen with no way to exit the body.

This can irritate surrounding tissue and cause the symptoms from which Balderas suffers: heavy periods, severe menstrual cramps, fatigue, nausea and pain with sex, urination and bowel movements.

Hoping to vanquish these problems, 700 health advocates gathered last weekend for the largest and most comprehensive endometriosis conference to date. Participants shared personal stories of living with the condition along with the latest scientific findings.

Sponsored by the Milwaukee-based Endometriosis Association and held in conjunction with its 25th anniversary, the early October conference drew researchers from around the globe who debated the disease’s cause and discussed cutting-edge treatments.

Some of the findings presented were disturbing, such as a possible link between endometriosis and thyroid cancer.

Others were promising, such work on a new diagnostic blood test.

Participants discussed medications now in development.

They also surveyed new techniques to ease the pain many patients experience with sex: surgery to tip the uterus forward and physical therapy to release pelvic floor muscles.

Since the only way to eradicate endometriosis is laproscopic surgery to remove misplaced tissue–and since studies show this remedy is only up to 66 percent effective–conference leaders focused on the range of remedies that can help patients stay healthy while they wait for a definitive cure.

"This conference showed there is far more to treatment that just surgery and drugs," says Dr. Deborah Metzger, a gynecologist and endocrinologist in Los Altos, Calif.

Diagnosis Can Take Years

Since endometriosis doesn’t have visible outward symptoms and since it is often confused with other conditions, it takes an average of 10 years to diagnose.

"This can be extremely frustrating for patients," says Dr. David Redwine, an endometriosis surgeon from Bend, Ore. "Mothers, nurses and even doctors tell them, ‘You’re not comfortable being a woman. That’s why you have pain with intercourse. Every other woman has periods. Learn to live with it.’"

To screen for endometriosis, doctors may perform an ultrasound or take a CA-125 blood test, an older test that detects proteins found in the blood of some women with the condition.

Until a newer, more accurate blood test is perfected, the only sure-fire way to diagnose the disease is through surgical laparoscopy, in which a scope is placed through the bellybutton to look for abnormal tissue.

If a woman has the disorder, the misplaced endometrial tissue in her body responds to hormonal cycles, shedding blood that can get trapped and lead to the growth of cysts and scar tissue. Over time, these adhesions can bind organs together, sometimes adhering the fallopian tubes to the abdominal wall and causing infertility.

As much as 40 percent of women with endometriosis eventually become infertile. Those with the disorder are also at higher risk for a host of other health problems: allergies, asthma, chemical sensitivities, chronic fatigue syndrome, eczema, fibromyalgia, gastrointestinal disorders, hypothyroidism, insulin resistance, lupus, Lyme disease, melanoma, migraines, non-Hodgkin’s lymphoma, rheumatoid arthritis and cancers of the breast and ovaries.

Many patients must take extreme measures to control their symptoms.

Due to debilitating fatigue, Mary Lou Ballweg, the director of the Endometriosis Association, has spent 18 months of her life bedridden.

To manage her gastrointestinal problems, Sharon Deevey, a 61-year-old endometriosis patient from Columbus, Ohio, eats what she describes as "a diet fit for toddlers: completely bland, with no seasonings whatsoever."

To ease chronic abdominal pain, Jen Singer, a 38-year-old Kinnelon, N.J., resident with endometriosis, had an elective partial hysterectomy at age 37.

"A year later, I’m in daily pain once again, most likely from an adhesion in my right fallopian tube," she says. "At this point, the most I can do is pray for menopause, when the symptoms of endometriosis usually cease."

Conference Tackles Baffling Disease

Last weekend’s Endometriosis Association conference kicked off with a debate between Metzger, who argued endometriosis was a systemic immune disorder, and Redwine, who argued it was a localized problem best treated with surgery.

Over the course of the conference, experts debated wide-ranging theories about the disease’s origin. Some said it lies in the genes, as women with a mother or sister who has the condition are seven times more likely to develop it. Some said it starts in utero, when cells meant to develop into the womb accidentally wind up in the abdominal cavity.

Some pointed to the environment, as exposure to the pollutant dioxin can raise the risk. Others blamed "retrograde menstruation," in which tissue a woman sheds during her period backs up into the fallopian tubes, enters the pelvic cavity and spreads. Still others said endometriosis starts when the blood system carries uterine tissue outside the womb.

"Many believe a combination of these factors can work together to create endometriosis," says Ballweg. "But until we understand what causes this disease and develop a cure that addresses the underlying problem, the best strategy we have is to use conventional and complementary medicines to help women stay healthy."

Medications proven to reduce endometrial tissue growth and slow or halt menstruation include contraceptive drugs including birth control pills, injections, patches and rings; and hormone treatments including Danazol (a pill), Lupron (an injection), Synarel (a nasal spray) and Zoladex (a pellet inserted beneath the skin).

Newer, recently-approved drugs include an improved formulation of two drugs that can be injected: the contraceptive Depo-Provera; and depo-subQ provera, a chemical cousin of Lupron, but with fewer side effects.

Medications now in development include hormonal drugs called estrogen receptor beta agonists and selective progesterone receptor modulators, as well as angiogenesis inhibitors, which work by cutting off the blood supply that endometriosis needs to grow.

Surgeries can range from the conservative (cauterizing, cutting, lasering or scraping) to the radical (removing the uterus and ovaries).

Alternative remedies also abound: tai chi, chi kung, chiropractic, guided imagery, meditation, yoga and dietary modifications including slashing sugar consumption and taking vitamin C and E supplements.

As they surveyed these treatments, physicians, scientists and patients agreed on one point: the need for a definitive cure.

"Endometriosis doesn’t get enough attention in our society: not from researchers, not from doctors and not from the media," says Ballweg. "We hope events like this conference will raise awareness, bring in more scientific funding and possibly even bring us a cure."

Molly M. Ginty is a freelance writer based in New York City.