CHAPTER 23

POLYCYSTIC OVARY SYNDROME: THE HIDDEN FERTILITY ROBBER

Stubborn extra pounds. Erratic menstrual cycles. Acne. Infertility. And a big hair problem: It’s thinning up on top yet growing luxuriantly on your face and body. Like the pieces of a strange puzzle, the warning signs and symptoms of polycystic ovary syndrome (PCOS) don’t seem to add up to a single medical problem.

For most of the 20^th century, doctors treated the individual symptoms of PCOS as unrelated medical problems. That changed in 1976, when researchers stumbled upon a pair of common denominators—high insulin levels and insulin resistance—that have changed the way PCOS is diagnosed and treated. “High insulin isn’t the only factor in PCOS, but it is very important,” says infertility specialist Sandra Carson, MD, a reproductive endocrinologist and PCOS researcher at Baylor College of Medicine in Houston. “It may act on the ovaries to increase male hormones. The end result is that you stop ovulating, gain weight, develop acne, and can even have abnormal face and body hair.” Over the long term, it also raises your risk for diabetes, heart disease, and several forms of cancer.

Serious stuff. Yet most PCOS is never diagnosed or treated—despite the fact that it’s the most widespread hormonal problem faced by American women, affecting up to 13 million. “One in 10 reproductive-age women in the United States suffers from PCOS, but up to three-fourths are unaware they have it,” says endocrinologist Rhoda H. Cobin, MD, a clinical professor of medicine at Mount Sinai School of Medicine in New York City and past president of the American Association of Clinical Endocrinologists. “It is important to alert these women to the serious health complications associated with PCOS. Early detection and careful management can prevent many from occurring.”

And it’s no longer a problem for grown women only. The childhood obesity epidemic has led to another emerging health problem: an increase in the number of young girls developing PCOS, the American Association of Clinical Endocrinologists recently warned. Early weight gain can prompt early menstrual periods, raising risk for PCOS and ovulation problems. “PCOS usually was diagnosed in women in their twenties and thirties. This unfolding epidemic is putting girls as young as 11 years old at risk for serious health complications,” says John Nestler, MD, chair of the division of endocrinology and metabolism in the Virginia Commonwealth University School of Medicine. Adolescent girls with PCOS are also at significant risk for metabolic syndrome and type 2 diabetes.

THE BLOOD SUGAR CONNECTION

The PCOS threat is far-reaching. Among women with PCOS, 80 percent are insulin resistant, 33 percent have prediabetes, and 10 percent will develop type 2 diabetes before the age of 40, say researchers from the University of Chicago. PCOS can be a killer, raising your lifetime risk for diabetes 7 to 10 times higher than normal, doubling your odds for a heart attack or stroke, and leaving you more vulnerable to cancers of the breast and uterine lining, among others.

New research reveals the following risks.

Heart-threatening inflammation: In a study of 210 women, nearly 40 percent of those with PCOS had danger-zone levels of an inflammatory compound called C-reactive protein, compared with less than 10 percent of women without PCOS, report scientists from Israel’s Rambam Medical Center in Haifa. C-reactive protein raises risk for clogged arteries, blood clots, and high blood pressure.

Clogged arteries: University of Pittsburgh cardiologists who scanned the neck arteries of 267 young women (ages 30 to 44) found a tenfold higher risk for dangerous plaque in artery walls of study volunteers with PCOS. Clogged carotid arteries are a potent marker for heart disease risk.

Metabolic syndrome: PCOS doubles your risk for metabolic syndrome, a cluster of heart-threatening health problems including high blood pressure, high triglycerides, and low levels of heart-protecting HDL cholesterol, say Virginia Commonwealth University endocrinologists who discovered the risk after screening 161 women with PCOS. “Women with PCOS should automatically be screened for the metabolic syndrome to prevent the risk of early onset cardiovascular disease,” says lead study author John Nestler, MD.

Sleep apnea: University of Chicago researchers who checked 40 women with PCOS found that 75 percent were at high risk for sleep apnea. These women also had higher levels of insulin, a risk factor for diabetes.

Cancer: PCOS can triple your risk for cancer of the endometrium, the lining of the uterus. Research also suggests that PCOS could raise your risk for breast cancer three to four times above normal.

THE MANY FACES OF PCOS

Some women with PCOS have warning signs that start with adolescence, such as irregular menstrual periods. Others have no obvious symptoms—until infertility or miscarriage makes their hopes for motherhood difficult to attain. PCOS can cause a host of problems, including those listed here.

Menstrual trouble: You may have irregular bleeding (including lengthy bleeding episodes, scant or heavy periods, or spotting), infrequent periods (cycles are often more than 6 weeks apart), or amenorrhea—no periods at all.

Chronic pelvic pain: Polycystic ovaries, sometimes three times bigger than normal, can lead to the feeling of pelvic fullness and pelvic pain during intercourse.

Bloating and fluid retention: Due to a complex interplay of hormones affecting fluid balance, many women with PCOS experience persistent premenstrual syndrome.

Abnormal growth of facial and body hair: Known as hirsutism, this growth commonly appears where women don’t want it—the face, neck, chest, abdomen, thumbs, toes, and sideburns.

Loss of scalp hair: Thinning is usually most evident at the top of the head rather than as a receding hairline.

Oily skin, acne, and dandruff: Elevated androgen levels can cause the skin to produce excess sebum, a waxy goo that can clog the pores and cause pimples, blackheads, and inflammation. It can also make the skin on the scalp flaky, producing dandruff.

Skin problems: A woman with PCOS can develop skin tags—benign, hormonally induced growths that resemble grains of puffed rice—on her neck, eyelids, armpits, upper chest, and groin. Or she may develop acanthosis nigricans—dark patches of skin that appear under her breasts or on her neck, armpits, elbows, knees, hands, or groin. These dark patches are a hallmark of high insulin levels and may fade as insulin sensitivity improves.

Infertility: If you’ve tried to conceive for 6 to 12 months without success and have any of the other symptoms listed here, talk with your doctor.

Obesity: The extra pounds associated with PCOS often settle in the abdomen, giving a woman with the condition a distinctive apple-shaped figure. It’s now known that “apples” have a higher risk of heart disease and type 2 diabetes than “pears”—women who carry their weight in their hips and thighs.

Diagnosis, Please

If you think you might have PCOS, take our quiz. Then see your doctor. She will first rule out other health problems that can cause PCOS-like symptoms, including hypothyroidism (when your thyroid gland produces too little thyroid hormone), hyper-prolactinemia (when your pituitary gland makes too much prolactin, a hormone that regulates ovulation), and ovarian or adrenal tumors.

“Women with PCOS often have three major clinical problems: periods, weight, and skin. If all three exist, there is over a 95 percent chance that the diagnosis is PCOS,” says Samuel S. Thatcher, MD, PhD, director of the Center for Applied Reproductive Science in Johnson City, Tennessee, and author of PCOS: The Hidden Epidemic. If PCOS seems to be a possibility, your doctor should also perform these screening tests, which can help assess your diabetes and heart risk and provide information abut your fertility.

• A fasting comprehensive biochemical panel (a battery of blood tests used to evaluate liver and kidney function by measuring proteins and enzymes) and lipid panel (to check LDL, HDL, total cholesterol, and triglycerides)

• A 2-hour glucose tolerance test (GTT) with insulin levels

• Measurement of the ratio of luteinizing hormone to follicle-stimulating hormone (LH:FSH), an indicator of the health of the ovaries. Most premenopausal women have a ratio close to 1:1. Levels of LH higher than FSH suggest PCOS; some doctors believe that an LH: FSH greater than 2:1 or 3:1 indicates PCOS.

• Tests for hormones that can affect fertility, including dehydroepiandrosterone sulfate (DHEA), sex hormone binding globulin (SHBG), androstenedione, and testosterone

MEDICAL BREAKTHROUGHS

The link between PCOS and insulin has opened new doors for women hoping to overcome the syndrome and have children and lead healthier lives. On the cutting edge: Scientists are studying the effects of several insulin-sensitizing diabetes drugs on women with PCOS. Here’s what they’re learning.

Rosiglitazone may help fertility. In a recent Stanford University study of 42 women with PCOS, half of those who took the diabetes drug rosiglitazone for 12 weeks ovulated and saw insulin resistance and insulin levels drop.

Metformin could help alleviate cardiovascular risks. Italian researchers found that when 30 women with PCOS took the diabetes medicine metformin for 6 months, their cardiovascular health improved. Levels of “bad” LDL cholesterol fell, levels of “good” HDL rose, and arteries were more flexible. Meanwhile, American researchers at several universities are tracking whether 678 women with PCOS who take metformin plus the ovulation-inducing fertility drug Clomid will be able to get pregnant.

RISK CHECK: QUIZ—COULD YOU HAVE PCOS?

Only a doctor can diagnose PCOS. However, the following quiz, from the Polycystic Ovarian Syndrome Association (PCOSA), can help you determine whether you should be evaluated for the condition.

Section 1: Menstrual Irregularities

When not on birth control pills, do you have or have you ever had any of the following problems? Place a check mark next to each applicable item. Score one point for each item unless otherwise indicated.

Eight or fewer periods per year

No periods for an extended period of time (4 or more months)

Irregular bleeding that starts and stops intermittently

Fertility problems (two points if you have seen a fertility specialist or been treated with fertility drugs to induce ovulation)

Section 2: Skin Problems

Place a check mark next to each applicable item. Score one point for each item unless otherwise indicated.

Adult acne or severe adolescent acne

Excess facial or body hair, especially on upper lip, chin, neck, chest, and/or abdomen

Skin tags

Balding or thinning hair

Dark or discolored patches of skin on your neck or groin, under arms, or in skin folds (two points)

Section 3: Weight and Insulin-Based Problems

Place a check mark next to each applicable item. Score one point for each item unless otherwise indicated.

Excess weight or difficulty maintaining weight (two points if your excess weight is centered around your middle)

Sudden unexplained weight gain

Shaking, lack of concentration, uncontrollable hunger, and/or mood swings 2 or more hours after a meal

Score two points if you have a family history of type 2 diabetes, heart disease, or hypertension

Section 4: Related Problems

Although there is little or no documented research, many women with PCOS have experienced the following problems. Place a check mark next to each applicable item. Score one point for each item.

Migraines

Depression and/or anxiety

Rapid pulse and/or irregular heartbeat

Pregnancy complications such as gestational diabetes or excess amniotic fluid

Scoring

0–4 points: Although PCOS is possible, it’s unlikely.

5–9 points: If you are concerned about your health and score in this range, you may want to talk with your doctor about the possibility of PCOS, as well as other disorders.

10–14 points: Most women diagnosed with PCOS score in this range. Talk with your doctor about the possibility that you have PCOS.

15–20 points: A score this high warrants urgent consultation with a doctor regarding PCOS or other endocrine-related disorders.

SMART SOLUTIONS: A PCOS SYMPTOM-RELIEF PLAN

You may not need to lose weight if you have PCOS; 40 to 50 percent of all women who have it remain at a normal weight. But if you are over-weight, losing even 5 to 10 percent of your body weight can reduce insulin resistance and androgen levels and improve menstrual regularity and the appearance of your skin. In fact, some women see improvements within days of reducing calorie intake.

Paring pounds can be tough for women with PCOS, probably because of high insulin levels that may promote fat storage and discourage fat burning in your body. At many PCOS clinics, dietitians recommend a low-glycemic eating plan that relies on healthy fats, lean protein, and “good carbs” (fruits, veggies, and whole grains)—like the Sugar Solution plan—to keep blood sugar lower and steadier. Research is beginning to suggest that low-glycemic eating may give people with insulin resistance a weight-loss edge by dialing back insulin levels so the body can burn a little more fat. (Of course, you still have to follow a reduced-calorie diet; good carbs aren’t a magic bullet!) “While weight loss can be difficult for women with PCOS, studies show that it can help correct the very insulin insensitivity that’s making it difficult,” says Dr. Thatcher.

Eating lower-GI meals and snacks can help you avoid blood sugar spikes that prompt your pancreas to release a flood of insulin. Keeping insulin lower may, researchers suspect, also lower testosterone levels in your body. Glycemic index (GI) researchers at the University of Sydney in Australia even believe that following a low-GI meal plan could lower insulin and testosterone levels enough to ease PCOS-related metabolic problems, including menstrual cycle irregularities, tiredness, body-hair overgrowth, acne, and mood swings.

THE SUGAR SURVIVORS: Jeannine Scott

“Just 2 months!” recalls Jeannine Scott with a laugh as she nurses her 4-month-old daughter, Ava. “My husband and I spent a year trying to conceive. I joined a study and was pregnant in 2 months. I feel so blessed.”

Scott, who was in her late twenties when daughter Ava was born, was the first success story to emerge from a nationwide study of 678 women with polycystic ovary syndrome (PCOS). The goal: babies—and new insights into possible links between PCOS, the fastest-growing infertility problem in the United States, and metabolic syndrome.

The researchers still are weighing the data to see how one of three experimental treatment strategies for PCOS-related infertility—the ovulation-stimulating drug Clomid, a diabetes medicine called Metformin, or a combination of the two—gave women in the study an edge when it came to conceiving and carrying healthy babies to term.

For Scott, PCOS was a surprise diagnosis: She didn’t have the usual symptoms such as weight gain, acne, or problems with unwanted hair growth. It was only after a year of trouble conceiving that tests revealed she had cysts on her ovaries—a sign of PCOS for some, but not all, women with this condition. (Some women with cysts do not have PCOS, and new research shows that women without cysts can have the condition as well.)

Enrollment in the study meant frequent blood tests, which revealed her pregnancy within about 2 weeks of conception, Scott says. (At that point, the medications were stopped.) She’s thrilled with her little girl: “Her hair is brown just like her father’s, and her eyes are blue like mine,” she says.