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The Private Anguish of PCOS

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Published: 10/17/2006
Updated: 07/24/2007

A 29-year old woman -- let's call her Claire -- gazes unhappily at her reflection as she stands in front of the mirror. Reaching up to pinch the unsightly roll of fat that surrounds her midsection, she notices that the hair on her forearms, always unusually heavy, is looking thicker and darker than ever. The same thing seems to be happening to the hairs on her chin. An even more pressing worry is the fact that she's missed her period for several months, even though she knows she couldn't possibly be pregnant. What, she wonders, is happening to her?

According to Ann Brown, MD, an endocrinologist at Duke University Medical Center, Claire's problems could be symptoms of polycystic ovary syndrome (PCOS), a hormonal disorder that places women at risk for infertility, diabetes, and heart disease. Symptoms include hirsutism -- excess facial and body hair -- and irregular menstrual periods that may only come three to six times a year. Obesity, particularly in the trunk area, male pattern balding on the scalp, darkening of the skin around the neck, and acne are other red flags.

Affecting 6 to 10 percent of women of reproductive age, PCOS is usually diagnosed by a physician when the woman is unsuccessful in getting pregnant. Thanks to increasing public awareness about PCOS, more women now seek help when experiencing the syndrome's other symptoms. Because these symptoms can occur with other disorders, however, PCOS can be difficult to diagnose. That makes it not only a distressing condition, but a lonely and confusing one: "Many of my patients say they've had a sense that something was wrong with them for many years, but were told that there's nothing that could be done for them," says Brown.

No one knows the precise cause of PCOS, though some doctors believe that an abnormally high level of insulin resistance -- a precursor to diabetes -- might cause a disruption in reproductive hormones, leading to infertility. Women with PCOS who do manage to conceive are more likely to develop gestational diabetes. They are also at risk for early-onset diabetes, high blood pressure and cholesterol levels (either or both of which often precede heart disease), and endometrial cancer.

Many women with PCOS have extremely high levels of the male hormones testosterone and androgen in addition to insulin resistance. "What we now think is happening is that the high levels of insulin are stimulating the ovaries to produce testosterone," says Brown. This creates the hormonal imbalance and symptoms associated with PCOS and symptoms such as acne and hirsutism.

Brown's diagnostic workup for PCOS includes a modified glucose tolerance test--a sort of metabolic stress test-- in which insulin and glucose level are drawn after fasting and again after the patient drinks a glucose-rich solution. The higher the insulin level for any given glucose value, the more insulin-resistant the patient will be. Lipids are also checked, since people with insulin resistance tend to have high triglycerides and low HDL. Dr. Brown frequently draws liver tests, since many women with PCOS may have elevated levels due to fatty infiltration of the liver.

There are various treatments for PCOS. For women who do not ovulate when given fertility medications (Clomid, Serophene), increasing insulin sensitivity with metformin (Glucophage) may help. For PCOS patients not trying to conceive, birth control pills are prescribed to help regulate periods, slow hair growth, and improve acne. To further slow unwanted hair growth, spironolactone, a medication that blocks testosterone action in the hair follicles, is sometimes prescribed. For some women, a cream called Vaniqa can help to slow the growth of unwanted hair. These, along with permanent hair removal procedures such as electrolysis and laser, are often very effective in controlling the hirsutism that often accompanies PCOS.

Metformin therapy is an option for women with PCOS who are obese, helping to delay the development of diabetes. "But some of these women do not want to start out on medical therapy, so we concentrate on lifestyle changes first -- nutrition and exercise," says Brown. "Many of my patients go on low-carbohydrate diets and find they have fewer carb cravings. Some patients on metformin say the same thing. But no one diet is for everyone, and it is important to find what works for each individual.

Although half of all women with PCOS are not obese and are therefore less likely to be insulin-resistant, Brown is concerned about the rising number of insulin-resistant cases.

"These women are developing insulin resistance or impaired glucose tolerance in their 20s, 30s and 40s, much earlier than we usually detect it," Brown says. "They have a lot of years ahead of them to deal with this disorder and the complications that may develop. So lifestyle changes designed to lower insulin resistance and promote overall health, similar to those recommended for people suffering from diabetes, are a definite part of the therapy."

These include regular aerobic exercise, a diet low in saturated fat and empty carbohydrates, weight management, and smoking cessation. Studies such as the Diabetes Prevention Program (DPP) have shown that even small changes, like 150 minutes of brisk walking every week, and relatively small amounts of weight loss (on the order of 20 pounds for a 200pound person) are very powerful in staving off the development of diabetes.

Fortunately, due to increasing information and knowledge about PCOS, women like Claire are finding answers to their questions about their symptoms -- and getting the help they need to deal with this challenging disorder.