If you have infrequent periods, acne, or other seemingly minor symptoms of polycystic ovarian syndrome, your health may be at risk.
By Katrina Woznicki

Finding out I was infertile was the luckiest thing that could have happened to me. Of course, no one wants to have to go through medical treatment in order to become pregnant, but if I hadn't wanted a baby so badly at 30, I might never have learned that I have a condition that threatens my future health. My diagnosis: polycystic ovarian syndrome (PCOS), the most common endocrine disorder among women of reproductive age, affecting roughly 5 million of us.

Because PCOS causes numerous tiny cysts to form on the ovaries and interrupts the normal menstrual cycle, many doctors have long considered it solely a fertility issue. But research now shows the syndrome's effect on hormones can trigger a cascade of physiological changes that increase a woman's risk for diabetes, heart disease, and even cancer. In fact, women with PCOS are more than twice as likely as other women to have calcifications in their coronary arteries, a major predictor of heart disease, according to a recent study in The Journal of Clinical Endocrinology & Metabolism.

What's more worrisome is that many women aren't diagnosed, let alone treated, until they try to get pregnant even though symptoms almost always begin at puberty. "Physicians just don't take irregular or nearly absent periods, one of the chief symptoms of PCOS, seriously enough," says Andrea Dunaif, M.D., chief of endocrinology and professor of medicine at the Feinberg School of Medicine at Northwestern University in Chicago. "The knee-jerk reaction is to simply prescribe oral contraceptives to regulate periods, but that can mask the condition until other symptoms develop."

PCOS is easy for both doctors and patients to overlook because of the wide range of its symptoms, many of which can be attributed to other causes. In addition to ovarian cysts and infrequent periods, women may also experience acne, obesity, and excessive hair growth on their face, chest, and upper back; it's this particular cluster of signs doctors tend to look for when diagnosing PCOS. The problem with that? Nearly a third of the 5 to 10 percent of women who have the disorder don't experience all of those telltale symptoms. Take me, for instance. Until a pelvic ultrasound revealed cysts on my ovaries, the only red flag I had was that I rarely needed to buy tampons. My skin is usually clear, my weight has always been healthy and I have no more hair than the average gal. Yet when PCOS isn't recognized or treated until a woman wants a family, she could miss out on a decade's worth of intervention to prevent infertility and all those other major health problems. And when it comes to warding off killers such as heart disease and diabetes, no one can afford to lose that much time.

The vast majority of PCOS symptoms can be blamed on high testosterone. The ramped-up levels of this male hormone can lead to hairiness and acne as well as interfere with ovulation. But often another hormone plays a big role in PCOS, and that's insulin. When present in normal amounts, insulin allows the body to store food as fuel by helping cells absorb blood sugar. Up to 70 percent of women with PCOS, however, don't respond to regular insulin levels, a condition called insulin resistance. That means the pancreas produces more of the hormone so cells can get the energy they need. At the same time, the insulin overload prods the ovaries to keep cranking out testosterone, which blocks the hormonal cycle necessary for ovulation and menstruation.

Beyond that, insulin resistance puts women on the fast track to diabetes. In fact, women with PCOS are seven times more likely to be diagnosed with diabetes than women with normal cycles, says Ricardo Azziz, M.D., chairman of obstetrics and gynecology at Cedars-Sinai Medical Center in Los Angeles. "Insulin resistance usually has no obvious symptoms, which is why all women with menstrual irregularities need to be screened for the condition, period," Dr. Azziz says. All it takes is a couple of blood tests, usually a fasting glucose test or a glucose intolerance test. With early intervention, many cases of insulin resistance can be controlled or even reversed, drastically reducing the chance that diabetes will develop, he says.

Stepping up workouts, eating more healthfully and losing weight, if necessary, can help every woman with PCOS keep her insulin levels under control and in some cases restore menstruation, says Walter Futterweit, M.D., clinical professor of medicine in the division of endocrinology at the Mount Sinai School of Medicine in New York City. "But the vast majority of patients require medication, often the diabetes drug metformin," he says. Metformin isn't officially approved to treat PCOS, but research shows it can significantly lower insulin levels, which helps normalize or regulate the other hormones. A recent study in Metabolism comparing two groups of PCOS patients with varying degrees of insulin resistance discovered that all lost about 7 percent of their body weight after a year of combining healthy dietary changes with metformin. Both groups also experienced significant decreases in insulin resistance and overall insulin levels. Other research has demonstrated that metformin can trigger ovulation and even restore menstruation.

For women who want to conceive, the odds appear to go up when metformin is paired with Clomid, an infertility medication that stimulates ovulation. (This approach worked for me. I got pregnant after my second round of treatment.) Still, metformin isn't without side effects, Dr. Futterweit says. "They are usually mild," he says, "and may include nausea, diarrhea, and abdominal pain. Still, it's important for patients to be regularly monitored."

Getting insulin and blood sugar under control for women with PCOS is important not only to prevent diabetes, but heart disease as well. After all, insulin resistance is a major threat to your heart. Plus, having PCOS is a heart disease risk all by itself. "When you look at patients under 40 with PCOS, many have higher LDL cholesterol levels, lower HDL cholesterol levels, higher insulin levels, higher body mass indexes and higher blood pressure, all contributors to early heart disease," says Jeanne Zborowski, Ph.D., senior research specialist in epidemiology at the University of Pittsburg. And when their PCOS is left untreated, she says, those women will very possibly have some chronic disease by their early 40s, about 20 years before most women. Indeed, a study published in Circulation found that PCOS patients had arteries that were nearly twice as stiff as a healthy woman's; this means the heart has to work harder to pump blood.

Perhaps scariest of all, untreated PCOS more than doubles a woman's risk for uterine cancer from about 4 percent to 10 percent. Because women with the disorder rarely ovulate, their body never gets the signal to produce progesterone, the hormone that thickens the endometrial lining. Without progesterone, overexposure to estrogen can cause cells in the uterine lining to grow out of control, says Linda Giudice, M.D., director of the division of reproductive endocrinology and fertility at Stanford University in California. But restoring normal bleeding patterns through lifestyle changes, diabetes medication or an oral contraceptive allows potentially cancerous cells to be shed during each cycle, Dr. Giudice says. In fact, taking the Pill long-term can slash every woman's risk for uterine cancer by 50 to 80 percent.

Cancer, heart disease and diabetes are all serious illnesses, but fertility problems can feel more pressing for women with PCOS. The good news is that most women who are treated are able to conceive, but it's crucial that a woman's prepregnancy treatment include managing insulin along with inducing ovulation, Dr. Futterweit says. When insulin and blood sugar aren't controlled before and during pregnancy, women with PCOS have a significantly higher chance of miscarriage as well as an increased risk of developing gestational diabetes and preeclampsia, a potentially fatal pregnancy condition, he says.

I was lucky. In April 2004, 15 months after my diagnosis, I gave birth to my daughter, Anna Sofia, without a hitch along the way. I now see my endocrinologist every two or three months for blood tests. Although my insulin levels are slightly elevated, I haven't needed to go back on medication, and thanks to the Pill, my periods arrive like clockwork. I have to be extra vigilant about sticking to my workouts and keeping my weight in check, but the effort is a small price to pay for the peace of knowing that I'll be here for my daughter.

SIDEBAR:
Could you have PCOS?

If your periods are infrequent or nearly absent, alone or with other symptoms such as acne, excessive hair growth or weight problems, see your doctor, advises Walter Futterweit, M.D., of the Mount Sinai School of Medicine in New York City. "As many as 80 percent of women with irregular cycles have PCOS," he says. The key is to see a health care provider with knowledge of the condition (ask whether the doctor frequently sees patients with PCOS). You can also request a referral to an endocrinologist. And if you do have PCOS, remember: The condition can be controlled, but it takes discipline. For support, visit PCOSupport.org. To get up to speed on the latest research, check out the American Association of Clinical Endocrinologists' PCOS position paper, available at www.aace.com/clin/guidelines.