Cyster-hood

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Periods irregular? You may be among the 1.4 million Canadian women with polycystic ovary syndrome

Laura Jones

Most women will have the occasional late period, but if a woman goes without a period for months and is not pregnant, it could be serious. “PCOS — Polycystic Ovary Syndrome, also known as Stein-Leventhal Syndrome — is the most common cause of irregular periods,” says Dr. Sheila Laredo, an endocrinologist and research scientist at Women’s College Hospital, Toronto. “If a young woman has some periods and they’re irregular, the chances of her having PCOS are about 90%.”

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Tanya Gulliver and Christine Choma have both faced irregular, unpredictable periods. They are among the estimated 1.4 million Canadian women ages 15 to 44 with PCOS. That’s about 5–10% of that age group. Dr. David Lau, an endocrinologist specializing in diabetes and a professor of medicine at the University of Calgary, notes “PCOS is becoming more common, especially among teenaged girls.”

For Tanya, who was diagnosed at age 18, another symptom — unwanted facial hair — caused her embarrassment. Later, she developed diabetes, which is also common with PCOS.

Christine had irregular periods but no other PCOS-related symptoms until age 36, when infertility prevented her from starting the family she and her husband wanted. With treatment, she had three children in two years (no twins).

Menstrual irregularities often begin in the early teens. Dr. Anthony P. Cheung, chair of the Society of Obstetricians and Gynaecologists of Canada’s reproductive endocrinology infertility committee, cautions: “Irregular periods are a symptom that shouldn’t be ignored.”

The Cysts aren't Cysts

“Despite the name, the ‘cysts’ involved in PCOS are, in fact, enlarged follicles on the ovary — not actually cysts,” says Dr. Laredo.

Women can have PCOS with or without these “cysts.” The exact cause remains a mystery, but the definition of PCOS has changed. Once thought to be a reproductive disorder, it’s now known to affect both the reproductive and endocrine systems.

Dr. Lau says PCOS brings about various hormonal changes. “There isn’t just one cause, like a disease. It is a combination of changes.” PCOS involves an imbalance of hormones — primarily insulin and androgens — and high insulin levels may precede the condition.

Diagnosis

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There is no single test that definitively indicates that a woman has PCOS. Diagnosis begins with eliminating other disorders — thyroid disease, tumours of the ovaries, adrenal glands or pituitary gland, and Cushing’s syndrome. A pelvic exam and blood tests are needed; a vaginal ultrasound may also be ordered. Knowing your own medical history, progression of symptoms and family history will help the diagnostic process.

Genetics Play a Part

Dr. Yaron Tomer, an endocrinologist at Mount Sinai Medical Center, New York, contributed to a 2000 study that reported that “the inheritance of PCOS is caused by subtle changes to the insulin receptor gene, which may alter its function in the ovaries.”

This genetic factor means the chance of having PCOS is at least five times greater if your mother or sister has it. Genetics does not fully explain the condition, however. “Environmental and lifestyle factors are also involved,” Dr. Cheung says. “An individual with PCOS does not necessarily have the full menu of symptoms.”

Infertility and miscarriage

About half the babies born in Canada are born to women who are over age 30. Many women don’t realize they have PCOS until they fail to conceive or find they can’t maintain a pregnancy. About 75% of women with PCOS are infertile, and some 40% have miscarriages.

Lesbians and PCOS

One study of patients at a fertility clinic found lesbians were more than twice as likely as heterosexual women to have PCOS, but Dr. Laredo says both lesbian and heterosexual women in the study who did not have PCOS had similar male hormone levels. However, lesbians with PCOS had higher male hormone levels than heterosexual women did.

Since many more lesbians than heterosexual women had PCOS, “it is possible that male hormones play a role but it isn’t clear whether there is a cause-and-effect relationship,” Dr. Laredo explains.

Insulin resistance leads to diabetes

Women with PCOS are seven times more likely to develop adult-onset diabetes than women of the same reproductive age group who do not have PCOS. Screening for diabetes is recommended, since prediabetes can be detected some five to six years before diabetes onset.

Insulin resistance can be a factor, whether the woman is heavy or slim.

PCOS increases “bad” cholesterol

Whether thin or heavy, women who have this condition are more prone to increased levels of LDL — what’s known as “bad cholesterol” — and lower levels of HDL, the “good cholesterol.”

Higher levels of total and LDL cholesterol and triglycerides are known risks for heart disease. “They are some of the markers for heart disease,” Dr. Cheung acknowledges, “but we don’t know if this means that a 28-yearold with PCOS is at a higher risk of developing heart disease in the future”.

Endometrial cancer

In women who don’t ovulate, the endome trial lining of the womb becomes overactive, thickens and breaks down. There may be spotting and bleeding. Heavy and prolonged bleeding can lead to anemia. In some cases, the endometrial cells can turn cancerous.

Depression makes things worse

“Depression,” says Dr. Laredo, posting as a guest expert on the website www.womenshealthmatters.ca, “can worsen problems with insulin resistance, diabetes and obesity because depression reduces the ability to under take lifestyle interventions, such as exercise, that might help reduce the impact of those issues.”

Suicide rates among PCOS sufferers are seven times higher than those in the general population.

Increasing fertility can reduce cancer risk

Dr. Cheung, who is also the director of the Reproductive Endocrinology and Infertility Fellowship program of the University of British Columbia, says it’s important to regulate menstrual irregularities from prolonged lack of ovulation to prevent the endometrial lining from developing abnormal cells that can progress to cancer. For those seeking pregnancy, weight reduction in those who are overweight may help but quite often fertility medication such as clomiphene citrate is required.

To increase the chances for ovulation, “ovarian drilling” is sometimes done. A laparoscope is inserted through the navel. “A needle tip makes little holes on the surface of the ovaries. It’s not the first choice, and is considered only for those who fail to respond to lifestyle modification and clomiphene treatment — or if laparoscopy is being done to rule out a pelvic factor for infertility,” says Dr. Cheung.

“A number of studies have shown that reversing insulin resistance leads to a reduction in PCOS symptoms, and even restoration of fertility,” says Dr. Steven Shumak, a professor of medicine at the University of Toronto.

Weight loss

“In obese women, weight loss often reverses insulin resistance and that, in turn, leads to a lowering of insulin levels,” says Dr. Shumak. “The net effect is an improvement in symptoms such as hirsutism. In women who aren’t obese, weight loss is not an option to reverse the insulin resistance. In that case, medications such as metformin may be prescribed to reduce insulin resistance.”

Management

Just as there isn’t a single diagnostic method, there is no simple cure. Dr. Laredo explains that treatment “needs to be customized to the main issue over time.” Cosmetic treatments, weight loss, oral contraceptives, insulin sensitizers, antiandrogens, fertility drugs and psychological support may be needed.

A regular exercise program helps to moderate symptoms in many cases.

What's Next?

Using questionnaires, Dr. Cheung maintains a voluntary PCOS registry. He notes that monitoring cases will, over time, provide detailed information that may help to identify the longterm health outcomes of women suffering from PCOS. “The definition and our understanding of PCOS are still evolving.”