(Almost) Secret Syndrome

PCOS’ many embarrassing symptoms can’t be ignored.

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.

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“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.

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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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Anyone who’s been to a fertility clinic should be familiar with the acronyms FSH (follicle-stimulating hormone) and LH (luteinizing hormone). These key pituitary hormones control the growth and release of eggs in the ovaries. Over the past 15 years, researchers have focused on the growth hormone insulin and its role in inducing ovulation. Because of insulin’s connection to diabetes research, it’s typically viewed as a signaling device. Basically, it tells the body to use glucose from the bloodstream, rather than fat, as an energy source.

Insulin levels in women with PCOS trigger glucose-related weight gain and contribute to the overproduction of testosterone. That, in turn, affects FSH levels and causes immature ovarian follicles to develop into cysts. PCOS patients are now considered pre-diabetic, their bodies struggling to process normal amounts of insulin.

Experts believe PCOS could be at the center of groundbreaking research on brain insulin and reproduction—provided that a clear definition of the disorder allows researchers to have the first large-scale clinical trials. A step in this direction has already been taken with newly proposed diagnosis criteria that narrows down dozens of symptoms to just three: infrequent or absent periods, high levels of testosterone, and cysts on the ovaries.

In her 15 years of experience, Sherif —whose PCOS expertise landed her on the Discovery Health Channel’s Mystery Diagnosis—has learned to place more emphasis on the first two criteria. In fact, she estimates that 25 percent of her patients show no signs of cysts.

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So far, no one has proposed a name change for PCOS, but organizations like the Polycystic Ovarian Syndrome Association and the federally run National Women Health Information Center (womenshealth.gov) continue to list multiple symptoms. The PCOS Association has even devised a quiz, which you can find at pcosupport.org/support/quiz.php.

For Sherif, the need for an integrative medical approach looms large for PCOS patients, who require a treatment plan that includes exercise and a low-carb diet to help control their glycemic index and insulin levels. In 2000, Sherif founded Drexel’s Center for Women’s Health, the first academic center of its kind in the United States. Her own research has focused on hormones and cardiovascular risk factors in premenopausal women. “Until the mid-1990s, PCOS wasn’t really addressed in clinical literature,” she says.

At issue was the difficulty in holding clinical trials for a disorder that wasn’t clearly defined by a specific set of symptoms—and, therefore, had no scientific pool of subjects. Still, there’s been a few “astonishing” discoveries. “We now know that if you give diabetic drugs to women who have irregular periods, they’ll eventually become regular,” says Sherif.

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In the mid-’90s, Italian researchers laid the groundwork for the study of insulin receptors. Rather than looking at the over-burdened pancreas, they turned their focus to unraveling the mysteries behind insulin-signaling systems in the brain.

One early study was carried out as a joint project with a German university and a diabetes center affiliated with Harvard Medical School. In 2000, researchers in Boston were credited with discovering the link between insulin and reproduction after laboratory mice in a brain-receptor study later failed to reproduce.

More recently, Harvard conducted the first comprehensive study involving healthy women. More than 18,000 subjects hoping to conceive were recruited over an eight-year period. Results showed that a diet of good carbohydrates like brown rice and wheat bread dramatically improved fertility rates. It’s now known as Harvard’s “Fertility Diet.”

This new research direction has contributed to the use of diabetes drugs to treat infertility in women with PCOS. It’s also ensured that the body-wide effects of the disorder have become a wake-up call to the medical and scientific communities.

“We’re seeing women’s health as the interaction and intersection of sex hormones and metabolism,” Sherif says. “PCOS is really the best demonstration we have in looking at an integrative approach to explain how hormones really affect us in so many ways.”

To learn more, visit pcosupport.org.

PCOS: Six Facts

1. PCOS is the most common hormonal disorder among women of childbearing age. As many as one in every 10 women will develop symptoms.
2. PCOS is a condition, not an illness. But like many illnesses, it seems to have a strong genetic or family link and has no known cure. Its symptoms can only be treated, not prevented.
3. Not all PCOS sufferers get cysts. And those who do say it’s the least of their worries.
4. PCOS affects more than just reproduction. It’s a serious metabolic condition related to the overproduction of insulin. Early diagnosis can prevent chronic depression and mood swings, type 2 diabetes, heart disease and stroke.
5. Thin women can also develop PCOS. And they can gain weight if it goes undiagnosed.
6. PCOS is one of the most commonly misdiagnosed women’s illnesses. And it’s one of the few based on symptoms that are either observed or tested with ultrasound (for signs of ovarian cysts) and blood work (to gauge glucose and hormone levels).

PCOS Checklist

Since no two patients have the same symptoms and no single test can detect PCOS, women are advised to be vigilant in observing changes in their bodies. See your doctor if you have at least three of the following symptoms:

1. Irregular or no menstrual periods.
2. Difficulty getting pregnant.
3. Hair loss in the classic “male baldness” pattern, or excess and abnormal hair growth and distribution.
4. Sudden weight gain or an inability to lose weight.
5. Snoring and breathing problems while sleeping.
6. Mood swings and sugar cravings.
7. Oily skin or chronic acne.
8. Mole-like skin “tags” or darkened, velvety skin on the nape of the neck and under the breasts.
9. Obesity, along with high blood pressure and high cholesterol levels.
10. Pain in the lower abdomen and pelvis.

Source: Polycystic Ovarian Syndrome Association (pcosupport.org)

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