PCOS – Polycystic Ovarian Syndrome
Article by Kathleen McAuliffe
It’s the leading cause of female infertility. As many as five million U.S. women have it. Could you be at risk for Polycystic Ovary Syndrome?
Beth Kushnick’s problem began during puberty. Her friends had their periods, she didn’t. During her late teens, her weight shot up by forty pounds. When she finally began to menstruate, her periods were long and heavy; then she’d go six months at a stretch without one. Her twenties were just as bad. She was plagued by constant fatigue and tender and boated ovaries.
Kushnick, now thirty-nine and working in the film industry in New York, knew something was wrong. But visits to two gynecologists and two endocrinologists provided no answers. “Basically,” she says, I was put on the pill to regulate my periods and sent on my way.”
Frustrated, Kushnick took action, contacting women’s health organizations and combing medical libraries for clues. She finally deduced she was suffering from Polycystic Ovary Syndrome (PCOS), a hormonal and metabolic condition. After five years of searching, she discovered the National Organization for Rare Disorders, in New Fairfield, Connecticut, which put her in contact with other women who shared similar symptoms. “What a relief it was to find out I wasn’t alone” says Kushnick. Though many women have never heard of it, PCOS affects as many as five million women in the United States (or one in ten), and is the leading cause of female infertility. It is, says Kushnick, “absurdly out of place on a list of rare disorders.” Left untreated, it can cause life-threatening complications.
PCOS was first recognized more than sixty years ago (and initially was called Stein-Leventhal syndrome after the two doctors who discovered it). But it is a complicated condition frequently overlooked by physicians. Generic symptoms are part of the problem. Erratic periods, acne, hirsutism (excess hair on the face and body), and balding on the crown of the head-caused by elevated levels of male hormones, are common. Sixty percent of women with PCOS are overweight. All of these symptoms, however, can be caused by other disorders.
And to complicate matters, not all cases look alike: One woman’s symptoms may scream PCOS-obesity, raging acne, heavy facial hair. Another patient-a woman of normal weight whose only complaint is a longer-than-normal menstrual cycle-may be more difficult to diagnose. Even the symptoms that give the disorder its modern name-undeveloped eggs in the ovaries that appear as multiple cysts in ultrasound images-doesn’t after every woman with PCOS.
“In my experience, as many as half of women walking around with PCOS don’t know it,” says
Roger A. Lobo, M.D. chairman of the department of obstetrics and gynecology at Columbia University College of Physicians and Surgeons, in New York City.
Women with PCOS are also at risk for other disorders, many of which are likely to be related to insulin resistance. Such disorders include high blood pressure, abnormal lipids (high triglycerides and low HDL cholesterol), and heart disease. These are the same disorders that women with type 2 diabetes are at risk for developing.
Not all women who have insulin resistance will go on to develop type 2 diabetes, but there is still a price to pay. In a young non-diabetic the body may compensate for insulin resistance by secreting more insulin. Blood glucose levels remain normal, but the level of insulin in the blood becomes elevated. This condition is called hyperinsulinemia.
Hyperinsulinemia appears to play a key role in the development of PCOS. Studies have shown that hyperinsulinemia stimulates the productions of male sex hormones by the ovaries. It also decreases production of a protein that binds to sex hormones, so the male sex hormones are more available to tissues such as hair follicles. Studies also suggest that hyperinsulinemia may impede ovulation and contribute to infertility.
All things added together, PCOS is not just an infertility disorder or a problem with excess hair growth. Rather, it is a metabolic disorder that can affect several of the body’s systems. One could argue that the association of PCOS with type 2 diabetes, high blood pressure, abnormal lipids, and heart disease makes PCOS a major general health issue affecting young women.
Treatments for type 2 diabetes and obesity can work for PCOS as well. The first line of attack for all three is diet and exercise. If you are obese and have PCOS, losing weight will improve your insulin sensitivity, and the level of insulin in your blood will go down. Your menstrual periods may become more regular, your fertility may improve, and there will be a decrease in any excess hair growth that you may have.
If you cannot lose weight, or if you are not overweight to begin with, drugs that improve insulin sensitivity may help. These drugs include metformin, pioglitazone, and rosiglitazone,
Several studies indicate that metformin decreases blood levels of testosterone and increases the frequency of ovulation in both overweight and lean women with PCOS. In clinical practice, I have noted that some women with PCOS who were unable to become pregnant were able to conceive when treated with metformin, after traditional treatments for infertility, like the drug clomiphene, failed.
In three studies of women with PCOS, troglitazone, an insulin-sensitizer, has produced similar effects. However, troglitazone was pulled from the market in March after the Food and Drug Administration determined it was linked to 61 deaths.
Other new and novel insulin-sensitizing agents are being developed, and several of these are also being tested in women with PCOS. If the results are consistent with what has been reported for metformin and troglitazone, it seems likely that the use of insulin-sensitizing drugs will become standard therapy for many women with PCOS.
At this time, however, it should be noted that none of the available insulin-sensitizing drugs are approved for treating PCOS, and their use in doing so is considered “off label.” Also, pioglitazone and rosiglitazone may pose some risks to developing fetus once you are pregnant. The labels on both drugs warn that they should be used only if their benefits outweigh any potential risks to the fetus.
Studies of insulin-sensitizing drugs in PCOS suggest that women who have both PCOS and type 2 diabetes might benefit the most from treatment with insulin-sensitizing drugs rather than with insulin or a drug that enhances insulin release. There are no firm data on the number of women which PCOS and type 2 diabetes who experienced more frequent ovulation and renewed fertility when they switched from insulin or a sulfonylurea to metformin. However, this has happened with several of my own patients. It is unknown if women who have PCOS and who take metformin or one of the insulin-sensitizers are more likely to have multiple conceptions.
A Difficult Balancing Act
Because the range and severity of symptoms vary enormously, no treatment fits all patients. If the woman is overweight, doctors first recommend lifestyle changes—regular exercise and a low-calorie, low-carbohydrate diet. Slimming down can help restore fertility and lower male hormone levels for some patients, experts say.
Long a mainstay of PCOS therapy, oral contraceptives are still used to regulate periods and suppress excess male hormones, which can clear acne and alleviate hirsutism. More important, they reduce the risk of endometrial cancer. (Women with PCOS should avoid forms of the Pill that contain a progestin called Levonorgestrel, which mimics male hormones, potentially worsening symptoms). Spironolactone is commonly prescribed with the Pill for its anti-androgen properties, which help to manage severe hirsutism and replenish hair in the head. (Women who are or plan to become pregnant should not take Spironolactone.)
“Once diagnosed, PCOS can be controlled. Drugs are effective in helping to regulate the menstrual cycle and restore fertility.”
But the latest approach to PCOS therapy is drugs-such as Glucophage and Rezulin-that treat the insulin resistance believed to be at the core of the disorder. Glucophage can help patients lose ten to fifteen pounds, and both drugs lower testosterone levels, which decreases acne and hirsutism. The medications have also
been shown to reduce circulating levels of LH and insulin-changes that experts hope may translate into increased protection against diabetes and heart disease.
Finally, Glucophage and Rezulin frequently restore ovulation. In clinical trials of Glucophage, PCOS women who’d been unable to conceive by any other method got pregnant.
Another approach for PCOS sufferers unable to conceive is the fertility drug clomiphene citrate (Clomid, Milophene or Serophene). If three cycles of the medication fail to induce ovulation, the next step is injections of gonadotropin, which are pituitary hormones that regulate ovulation.
Because those with PCOS may be at higher risk than other others for complications of fertility treatments-multiple births, miscarriage and ovarian hyperstimulation, a potentially life-threatening condition-they should choose fertility specialists with expertise in treating these conditions.
“My doctor was very conservative, stepping up the dose of the fertility drugs in tiny increments to avoid serious aide effects,” says a thirty-five year old PCOS patient who requested anonymity. The cautious approach paid off. After three rounds of Clomid and four rounds of with gonadotropin, her pregnancy was complication-free, and she now has a healthy two year old girl. Her success story is not unique: The vast majority of PCOS women can have a baby with fertility therapy.
The latest development is an experimental drug, INS-1, an insulin-sensitizing agent similar to Glucophage and Rezulin, that has shown promising results in clinical trials. After six to eight weeks on the drug, 86 percent of PCOS patients ovulated, compared with 27 percent of women in the placebo group according to a study reported April (2000) in The New England Journal of Medicine. And no side effects were reported.
Living with PCOS
Even with treatment, having PCOS can be an ordeal. The most distressing aspect, according to a survey of patients, is the disorder’s visible markers, which can be especially devastating for young women.
“Freakish” is how a thirty-nine year old Sacramento based journalism student describes her early twenties, when PCOS threw a quadruple whammy. Her weight ballooned, and she developed acne, facial hair and bald patches on the crown of her head.
Lacking medical insurance, she went to the California Department of Health Services, which refused to cover electrolysis. She was able to get another state agency to cover 400 hours of facial electrolysis, and she no longer endures the indignity of a beard.
For now, most PCOS’s effects aren’t easily erased, but most sufferers agree that education and emotional support can help. “The feeling of solidarity is so empowering,” says Kushnick.
For more information about Polycystic Ovary Syndrome, contact:
American Infertility Association
666 Fifth Ave.
New York, NY 10103
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