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A Mysterious Ailment

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WebMD Feature

Nov. 27, 2000 -- By the age of 40, Lahle Henninger says she'd had only five naturally occurring menstrual periods in her entire life. She's since had more, but only with the help of hormone supplements. For years, this Virginia mother of four also suffered from excess facial and body hair, severe acne, and tremendous weight gain. What was causing such bodily mayhem? None of the nearly 20 doctors she consulted could come up with a diagnosis, let alone a solution.

Then, at 27, she sought help for a minor sinus infection. When Henninger told her doctor about her other problems, "She looked at me and said, 'You can't go two years without a period; that means something's wrong.'" The doctor ordered blood tests, a sonogram to check Henninger's ovaries, and the opinion of an endocrinologist. One week later, Henninger received the diagnosis: polycystic ovary syndrome (PCOS).

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The story gets worse: Researchers are now finding that women with PCOS are at higher risk for diabetes, heart disease, uterine cancer, and high blood pressure. For example, researchers reported in the January 1999 issue of the Journal of Clinical Endocrinology and Metabolism that these women are three times more likely to develop diabetes. At an annual meeting of endocrinologists this past June, researchers presented evidence suggesting that PCOS speeds the development of heart disease. This evidence brings an urgency to discovering better ways to diagnose and treat the syndrome, according to PCOS expert Walter Futterweit, MD, since he says that up to 10% of all U.S. women of reproductive age suffer from this often devastating condition.

The mystery of PCOS

What accounts for the lack of periods and other symptoms? Women with PCOS have excessively high levels of male hormones, such as testosterone. The result: Henninger's facial hair and the 278 pounds circling her midsection -- the "apple shape" associated with a propensity for heart disease. Testosterone overload can also lead to infertility or recurrent miscarriages, male pattern hair thinning, and sometimes multiple cysts on the ovaries. And, as evidenced by the irregular periods, women with PCOS don't regularly ovulate.

Researchers, however, have yet to uncover why these symptoms surface in the first place. One clue is that PCOS tends to run in families, says Futterweit, a clinical professor of medicine in the division of endocrinology at the Mount Sinai School of Medicine in New York City.

He hypothesizes that brain signals responsible for regulating reproductive hormones could be misfiring, or the ovaries and adrenal glands could be making the hormones incorrectly. Researchers are currently trying to find a gene that could help them understand why some women are more susceptible to developing PCOS.

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