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(Almost) Secret Syndrome

PCOS’ many embarrassing symptoms can’t be ignored.

(page 1 of 3)

Illustration by Jon KrauseThese days, it may be hard to believe that there’s any established disorder that goes unrecognized by many doctors and is typically under-reported by a large percentage of those who have it—let alone one that was discovered 75 years ago. Yet, until recently, researchers struggled to come up with a single definition or cause for polycystic ovary syn­drome. Among the terms currently in circulation: hormone imbalance, body-wide metabolic disorder, misdirected endocrine system. All are efforts to explain a wide range of symptoms that, if untreated, can lead to infertility and the inability to lose weight.

PCOS affects 10 percent of American women of childbearing age. Symptoms typically appear over the course of time, starting with the first menstrual period. They include hair loss and excessive hair growth, a thickening of the waist, and darkening of the skin—all signs of elevated androgens like testosterone.

In recent years, more cases of PCOS have been reported as women are seeking treatment for infertility. And the connection between testosterone and insulin levels goes a long way in explaining issues of weight gain. Of immediate concern for many doctors is getting the word out to those struggling with appetite control and other insulin-related problems.

“PCOS puts you at higher risk for diabetes, and that puts you at greater risk for heart disease and stroke,” says Katherine Sherif, an internist at Drexel University’s College of Medicine, addressing some of the life-threatening aspects of the disease.

New criteria for diagnosis has broadened the target audience for PCOS, casting it as more than a reproductive health concern and making it more of a grassroots issue than ever before.

All of which is good news for a disorder that didn’t appear regularly in clinical literature until the mid-1990s. It’s also one that presents so many body-wide complications that it often requires multiple visits to primary-care physicians, internists, general endocrinologists, obstetricians and gynecologists.

When PCOS was discovered 75 years ago by American gynecologists Drs. Irving Stein and Michael Leventhal, it was primarily considered a concern for women who wanted to have children. Missed or irregular periods pointed to problems with ovulation. Patients also exhibited many of the traits associated with pregnancy, including weight gain, sugar cravings and mood swings.

Initially, those with such symptoms were said to have Stein-Leventhal syndrome. But the disorder was later renamed after tests revealed that many women had ovaries covered with bead-like cysts—eggs that had failed to mature.

Detected by ultrasound, the cysts occur when immature ovarian follicles rupture and then fail to divide and become an egg cell. Without viable eggs, the body’s reproductive cycle is disrupted. That explains the missed or irregular periods—and why PCOS is now considered the leading cause of infertility in women.
 

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