PCOS You Saved My Life
The latest news on PCOS, an illness gynecologists often miss
by Kerri S. Smith
orig. pub. March 12, 2002
Two years ago, I wrote a story for Woman’s Day about my struggles with polycystic ovary syndrome. (See: Health Watch: PCOS What You Need To Know) Like many of the estimated 3.5 to 5 million American women with PCOS, it took me years to get a correct diagnosis, although I had all the classic symptoms. And by the time I was, it was almost too late.
PCOS is a bodywide metabolic disorder fueled by abnormal levels of hormones—the all-important messengers from the brain to every part of the body—especially insulin. Essentially, the endocrine system goes haywire, short-circuiting the hormones it regulates.
That’s why PCOS can affect everything from your hair to your uterus, from your skin to your blood sugar. It is a major cause of infertility, and can also vault you into obesity: Three-fourths of women with the syndrome are overweight. All may be at risk for diabetes, endometrial cancer, heart disease and stroke.
Like many women with the syndrome, for years doctors told me that losing weight would solve all my problems—especially my chronically irregular or nonexistent menstrual periods. By the time I was finally diagnosed, I also had endometrial cancer. At age 37, I had to have a radical hysterectomy, and I’m still coping with a host of medical complications.
As I told my story and that of other women with similar experiences, many of you around the country recognized the symptoms in yourselves, your daughters, sisters or friends. Readers took Woman’s Day to their doctor’s office so they could be (finally) diagnosed correctly and treated. In letters and e-mails, you let us know that babies have been born, cancer and diabetes averted, and other health problems treated as a result of the story.
Still, experts estimate that more than half of women with PCOS don’t know they carry this potentially dangerous disorder or are getting the wrong treatment. Why? Because this sneaky enemy of our health, first identified in the 1920s, is often misdiagnosed or underestimated. It can look different in different women. You may have just a few symptoms or more than a dozen. The first hint of a problem may become apparent when a girl reaches puberty or may not show up until much later, say, when a woman tries to become pregnant in her 30s.
But the outlook may be changing. Drug trials and research studies are underway around the country. And the National Institutes of Health is funding numerous studies to help women with PCOS conceive. “Lots of exciting things are going on. It’s huge,” says Walter Futterweit, M.D., FACP, clinical professor of medicine, division of endocrinology at the Mt. Sinai School of Medicine in New York City.
Some hospitals and clinics are giving free public lectures on PCOS. The American Association of Clinical Endocrinologists have committed to joint education projects with the Polycystic Ovarian Syndrome Association. PCOSA’s membership has more than doubled since the Woman’s Day story ran, says Corrina Smith, a spokeswoman.
We have many new developments to report. Hopefully, they will lead to new treatment options, longer, healthier lives and, for many of us, the ability to have children.
The Insulin Connection
Most experts agree that PCOS has a genetic component. Both men and women can pass it on to daughters through a propensity for insulin resistance.
When you eat, insulin helps the cells in your body store sugars and regulate fat storage. In people who have insulin resistance, it takes more insulin to perform the same functions, probably because of something that occurs after the insulin receptor has done its job. The pancreas usually compensates for the insulin resistance by making still more insulin.
Experts now think this dynamic—insulin resistance and overproduction—is the crux of the bodywide damage caused by PCOS. Problems processing insulin often lead to high blood sugar, weight gain and Type 2 diabetes. Other complications may include menstrual disorders, high blood pressure, high blood lipids and a predisposition to heart attacks and strokes.
Researchers at Brigham and Women’s Hospital in Boston and Mt. Sinai School of Medicine in New York City believe they’ve identified a gene that may be linked to the insulin receptor in women with PCOS.
Another major discovery: Studies also indicate PCOS may be the most common cause of Type 2 diabetes in premenopausal women. A new drug being developed by Insmed Incorporated, called INS-1, may reduce the risk of diabetes in women with PCOS, and be useful in the treatment of women with PCOS, with or without diabetes. INS-1 is in Stage 2 drug trials and initial results have been extremely promising.
To find out if you have insulin resistance, ask to have a simple fasting insulin test and a C-peptide test. “If you are a woman with insulin resistance and have at least one other symptom of the syndrome, it’s very likely you have PCOS,” says Charles Glueck, M.D., head of the Cholesterol Center at Jewish Hospital in Cincinnati.
New thinking: Forty to 60 percent of women with PCOS have a sister, mother or close female relative with similar symptoms. An endocrinologist should test and possibly treat them to prevent health problems.
Taking Off the Weight
Many women with PCOS are overweight or morbidly obese. Experts believe it’s the insulin resistance that makes it so tough to lose weight.
A diabetes drug, Glucophage (metformin), available in the U.S. since 1995, can work wonders for many women by helping to regulate insulin production. Some patients on the drug lose a significant amount of weight without dieting. Drug trials for newer insulin sensitizers aimed at controlling insulin are under way. They may also help women take off extra pounds.
Initially, researchers thought a low-carbohydrate diet helped control the syndrome’s insulin deviation. But new studies by Richard S. Legro, M.D., a reproductive
endocrinologist and gynecologist at Penn State College of Medicine at the Hershey Medical Center, and Ann Taylor, M.D., an endocrinologist at Massachusetts General Hospital in Boston, indicate cutting carbs actually works no better than a lowfat diet. Lowered calories, on either plan, bring about the same weight loss.
New thinking: Skipping breakfast and nighttime binge eating, patterns typical of many women with PCOS, may worsen the condition by sending your insulin levels up late at night. This may contribute to fat storage and weight gain. The same number of calories, spread over a whole day, does not raise nocturnal insulin levels, says Dr. Taylor.
Trouble Getting Pregnant?
Most women with PCOS have problems with their menstrual cycle, often leading to infertility or miscarriages. The “polycystic” in PCOS refers to the fact that many women have multiple cysts on their ovaries. While these cysts are benign, their formation is linked to hormone problems that may interfere with the normal ovulation process.
Some doctors now use laser therapy to remove part of the ovaries, because PCOS ovaries (and in many cases, the adrenal glands) sometimes pump out too many hormones, including elevated levels of testosterone. By removing some of the “cell mass,” doctors hope to curb the overproduction of testosterone, which leads to irregular menstrual cycles and an abnormally thick uterine lining. Over time, the thicker lining puts a woman at greater risk for endometrial cancer.
Dr. Glueck found that metformin helps a great number of PCOS women get pregnant. According to the first major study of PCOS and the drug, 91 percent of women had normal menstrual cycles after going on the diabetes drug. Eighty percent ovulated normally. This works the same for overweight and non-
overweight women, according to John Nestler, M.D., endocrinology chairman at Virginia Commonwealth University in Richmond, Virginia. (The first major study of PCOS in adolescents indicates the same percentage of teens have normal cycles and ovulate after taking metformin.)
More good news: Some studies suggest that many women who stay on metformin throughout their pregnancies are able to avoid miscarriage. According to a new study, the first trimester miscarriage rate plunged from 65 percent to 15 percent, which is the same as healthy women. Plus, taking the drug during pregnancy may decrease the chance of developing gestational diabetes, a serious complication. The drug did not cause birth defects or other health problems for the babies.
New thinking: For the best chance of getting pregnant, efforts to lose weight should be coupled with metformin therapy, says Dr. Glueck. Just taking metformin is not as effective.
Your Heart and Other Problems
There is a strong link between PCOS and heart disease. Women with PCOS have more coronary artery calcium, a marker for the plaque in coronary artery disease, than expected in premenopausal women, and on average were as likely to have coronary artery calcium as men of the same age, according to the research of Rose Christian, M.D., a clinical fellow at the Mayo Clinic in Rochester, Minnesota. (Normally, premenopausal women have one-third the risk of coronary calcium compared to similar-aged men.) Look for more medication aimed at treating this angle of the syndrome.
Researchers also believe there is a tie-in between sleep apnea (when you momentarily stop breathing during sleep), insomnia and PCOS. Mark Perloe, M.D., a reproductive endocrinologist at Georgia Reproductive Specialists in Atlanta, now routinely screens PCOS patients for sleep disorders. Blood insulin levels may contribute to this, though research continues.
Researchers also are looking at drugs that suppress ovary and adrenal gland overproduction, says Steven Petak, M.D., an endocrinologist at the Texas Institute of Reproductive Medicine & Endocrinology in Houston. He says a number of studies indicate that the best PCOS therapy is individualized treatment based on the appropriate hormonal evaluation. Since PCOS is so variable, the right care varies, too.
Bottom line: “We still have a lot more to learn about PCOS, about why it occurs, what the mechanisms are and better approaches to treatment,” Dr. Petak says. Dr. Taylor adds, “Remind women that we are really trying hard to solve this.”
New thinking: Preliminary research from UCLA links PCOS to depression. If this sounds familiar, mention it to your endocrinologist. Medication or therapy could help.