Health Watch: PCOS
What You Need To Know
Kerri S. Smith
Originally Published March 7, 2000
For decades, most doctors considered polycystic ovary syndrome a ho-hum menstrual disorder. But about six years ago, medical researchers across the nation began to connect the dots. Only then did they realize the magnitude of what they had on their hands.
“We’re talking about a metabolic disorder that disturbs multiple body systems,” says John Nestler, M.D., endocrinology chairman at Virginia Commonwealth University in Richmond. “Often there’s the extra burden of obesity.”
The syndrome is still so poorly understood that its cause and cure remain unknown. And the incidence is growing, although no one can say why, says Ron Feinberg, M.D., Ph.D., a reproductive endocrinologist in Wilmington, Delaware. “Diabetes is up thirty to forty percent, so is obesity, and so is PCOS. Women are getting PCOS sooner. “
Experts believe PCOS affects 6 to 10 percent of premenopausal women. The most common symptoms are irregular or no periods; too much facial or body hair, or thinning head hair; acne; weight gain; and dark gray or brown velvety skin patches around the inner thighs, armpits or nape of the neck. A woman can have one, five or a dozen symptoms.
The signs can first appear when a girl is about age 8 or 9—just as hormones are gearing up for puberty—or more commonly in adolescence. But some women don’t begin to notice problems until they’re in their 20s or 30s.
Today, the symptoms can be successfully treated and the syndrome’s progress curtailed. Yet, even as dozens more studies are under way and new, effective drugs become available, women still lose their fertility or develop life-threatening diseases.
Why? Because PCOS is “the syndrome that gets pushed under the door,” says Richard Legro, M.D., a reproductive endocrinologist and gynecologist at Pennsylvania State University. “Doctors don’t know what causes it or how to treat it, and they don’t like having that constantly rubbed in their faces,” he explains. “They tell their patients, ‘Just lose weight.’ That’s a knee-jerk reaction—a combination of medical ignorance in both understanding and treating the syndrome.”
The Many Faces of PCOS
You might assume that PCOS is a gynecological problem. But it’s actually a disorder of the endocrine system, which regulates hormones—the chemical messengers that orchestrate everything from reproduction to metabolism.
Most experts agree that the biggest culprit may be the powerful hormone insulin. When we eat, we release it into the bloodstream to process sugars and regulate fat storage. Most women with PCOS have insulin resistance, a problem with the way insulin acts in their bodies. In many cases, this may mean that they produce too much of it.
This insulin disorder has far-ranging footprints. In addition to tipping a woman’s body into diabetes, fueling weight gain and triggering heart disease, it can profoundly affect the ovaries. Once the ovaries are involved, the condition is usually recognized as polycystic ovary syndrome.
The hormonal imbalances caused by PCOS can short-circuit the reproductive system—even destroy it.
The flood of insulin produced by most women with PCOS sparks a hormonal misfire, causing their ovaries to pump out higher-than-normal levels of testosterone. Many women also produce too much estrogen. These hormonal imbalances are what trigger the skipped or irregular periods so common to the disorder, as well as tiny, benign cysts on their ovaries.
Not surprisingly, these problems can make getting pregnant very difficult—sometimes even impossible. “Most doctors use the same medications on any patients who don’t get their periods,” explains Dr. Legro. “Women with PCOS are more likely not to respond at all, or to be at increased risk for multiple pregnancy.” Even when a woman with PCOS is able to conceive, she may be more likely to have a miscarriage than a woman who doesn’t have the syndrome.
One of the most dangerous consequences of PCOS is endometrial cancer. Over time, missing your period causes your uterine lining to thicken, which puts you at greater risk. Normally, this cancer targets women in their 50s and 60s, but in women with PCOS it can occur as early as the mid-30s.
The Obesity Connection
Seventy-five percent of women with PCOS are overweight or obese. Does this mean all heavy women have PCOS? No. Weight gain has many causes, “but if you are overweight and have irregular menstrual periods, there is an eighty to ninety percent chance you have PCOS,” says Dr. Nestler.
In fact, researchers recently realized that the insulin resistance so common in PCOS is the primary cause behind the weight gain, and makes it much harder to lose the extra pounds.
More research is needed to explore the link between PCOS and obesity. “The weight problems a lot of patients have are related to the syndrome in a way we don’t yet understand,” says Ann Taylor, M.D., an endocrinologist and researcher at Massachusetts General Hospital in Boston, “partly because the metabolic implications of this condition have only recently been recognized.”
The obesity so common to the syndrome can dramatically compound a woman’s risk of potentially life-threatening conditions. For instance, the risk of developing diabetes is seven times greater. “The biggest thing we didn’t know a year ago is the surprisingly high level of diabetes and impaired glucose tolerance in women with PCOS, even when they’re under age forty,” says Dr. Taylor.
High levels of insulin and insulin resistance lead to high triglyceride levels, low levels of HDL (the “good” cholesterol) and high levels of LDL (the “bad” kind). It also increases the risk of hypertension. “By age fifty, women with PCOS have about a tenfold increase of risk of heart attacks and stroke compared to women without PCOS,” says Charles Glueck, M.D., an endocrinologist and medical director at the Jewish Hospital/Alliance Hospitals Cholesterol Center in Cincinnati.
Why Doctors Miss It
Some women have regular periods and no ovarian cysts. Others are at their ideal weight. Most are insulin-resistant, but not all. That’s why PCOS can be particularly tough to diagnose. But there are many other important reasons why the problem is so frequently not diagnosed.
“There’s not one test that you do and go, ‘Ah, this is PCOS!’” says Todd Nippoldt, M.D., an endocrinologist at The Mayo Clinic in Rochester, Minnesota. “You have to put it together from the clinical history, hormonal tests and a physical exam. You have to look at the whole picture.” (See “If You Think You Have PCOS,” below.)
Compounding the problem is the unreliability of certain lab tests, according to Steven Petak, M.D., an endocrinologist at the Texas Institute for Reproductive Medicine and Endocrinology in Houston.
For example, even when a woman’s endocrine system is malfunctioning, her hormone tests may show up as deceptively normal, simply because a laboratory’s “normal” range may have been set too high. And even when she is severely insulin-resistant, she may still appear to have normal glucose levels and test negative for diabetes.
Then there’s the masking effect of birth control pills, a common treatment for irregular periods. Going on the pill helps a significant number of women with PCOS settle into normal menstrual cycles, which can help prevent endometrial cancer.
However, having regular periods does not stop the progress of other aspects of the disorder, such as heart disease or weight gain. And being on the pill may mask other menstrual disorders and disguise hormone problems in lab tests.
Prejudice against overweight and obese women can also delay diagnosis. Some doctors equate large bodies with laziness, emotional problems or lack of willpower, says Bettye Travis, president of the National Association to Advance Fat Acceptance.
If a doctor makes the all-encompassing diagnosis of “too fat” and recommends 1,200-calorie diets or even surgery, he may fail to run the correct tests or dismiss what a patient says about her symptoms. An overweight woman with PCOS is already at high risk of developing endometrial cancer, diabetes and heart disease. Not receiving proper treatment for PCOS can dramatically increase her chances of getting these serious diseases.
More Treatment Options Than Ever
Right now, many doctors consider metformin, a diabetes drug, the best treatment. It lowers insulin resistance, helping some women lose weight. Early studies also show that it may protect against heart disease, and help women have regular menstrual cycles and become pregnant.
But the most exciting news concerns another insulin-sensitizing drug currently in development, called d-chiro-inositol. In a study led by Dr. Nestler, the drug helped 86 percent of participants ovulate. It also decreased their blood pressure and improved their hormone, triglyceride, insulin and blood-sugar levels, according to the study, published in The New England Journal of Medicine last spring. Other diabetes and insulin-related drugs are also being studied.
There are a number of treatments for specific symptoms:
Birth control pills and progesterone are effective in treating irregular periods, excess facial and body hair, and acne.
Aldactone (spironolactone) is helpful for excess hair and acne.
Infertility drugs such as Clomid (clomiphene citrate), Pergonal, Metrodin and Fertinex can help some women conceive.
A low-carbohydrate diet may help stave off diabetes, reduce weight and even restore ovulation, anecdotal evidence suggests. The diet connection is currently being studied.
Exercise is also being studied. Experts recommend 20 to 30 minutes every day.
Relieving stress may be beneficial. Some researchers believe that too much stress may aggravate many aspects of the syndrome, including insulin resistance.
You can lessen the symptoms of PCOS with drugs, nutrition, exercise and stress-relieving techniques. But be aware that this is a lifelong metabolic derangement, which means you’ll need to be carefully monitored by your physician. There might come a day when PCOS can be controlled completely through lifestyle, but we’re not there yet.