What is polycystic ovarian syndrome?

Glee actress Lea Michele told the world this week that she was recently diagnosed with polycystic ovarian syndrome (PCOS), a disorder that can affect your skin, your weight and your period.

It’s a very common condition, affecting around one in 10 women, but experts say there’s a lot of confusion surrounding the health issue.

Here’s what you need to know about PCOS.

What is PCOS?

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Polycystic ovarian syndrome (also called polycystic ovary syndrome) is a hormonal disorder, said Dr. Yolanda Kirkham, an obstetrician/gynecologist with the University of Toronto at Women’s College Hospital and St. Joseph’s Health Centre.

She hates the name, by the way.

“It’s actually a very poorly-named condition,” she said. Aside from being misleading about the cause, “People get alarmed that they have cysts on their ovaries when in fact all reproductive-aged women have cysts from time to time.

“We actually make them every month.”

According to Dr. Nicole Todd, an obstetrician/gynecologist at B.C. Women’s Hospital and Health Centre, to be diagnosed with PCOS, you need to have two of the following three things:

• Irregular periods (for example, a period only every few months or otherwise not on a 21 to 35 day cycle)
• Signs of extra male hormones (extra hair on the face, acne, or something that shows up in bloodwork)
• Small cysts on the periphery of ovaries (sometimes described as a “pearl necklace” on the ovary)

What causes PCOS?

As you can see above, cysts, despite being in the name, are just one of the three possible things used to diagnose PCOS. That’s because the disorder is primarily a hormone problem, Todd said.

The hormone imbalance actually causes the cysts, not the other way around.

When a woman ovulates, a cyst is a normal part of that process, she said. What happens in PCOS is that excess male hormones interfere with the normal release of the egg, so the cyst remains on the ovary.

“So what happens is instead of forming one cyst every month that releases an egg, you kind of get a start-stop phenomenon in the ovaries. You get a whole bunch of small, tiny, little cysts that form,” she said.

These don’t usually cause much discomfort or require surgery to remove, she said.

Because the eggs aren’t released as usual, this interferes with a woman’s menstrual cycle and causes irregular periods, Kirkham said. This can lead to an abnormal buildup in the uterine lining, because it isn’t shedding regularly.

As a result, some women, when they do have their period after a few months of missing it, might have an abnormally heavy one.

This is also why some women with PCOS may have trouble getting pregnant: their eggs aren’t being released as frequently. Kirkham says this isn’t infertility, but rather “sub-fertility.”

“If you go online and you go to support groups or whatnot, people talk about, ‘Oh I’m so devastated. I will never have children.’ And that’s actually wrong and it’s a disservice to patients if it’s wrongly presented or misunderstood.”

She notes that women with PCOS are still capable of getting pregnant and should definitely continue using some method of birth control if they want to avoid pregnancy.

The excess male hormones also cause some of the other common symptoms, like acne or unwanted facial hair.

As to what causes the hormone imbalance in the first place, doctors aren’t really sure. There seems to be a genetic component, Todd said. It’s also linked to high levels of insulin and obesity.

Kirkham noted that the condition should be treated, as it is linked to higher risks of uterine cancer and insulin resistance, which can lead to diabetes. It’s also associated with metabolic syndrome, which includes high blood pressure, high cholesterol and diabetes, Todd said.

How is it treated?

Treatment depends on which symptoms you’re trying to address, Kirkham said.

One thing that can help generally, she said, is lifestyle changes. Eating a healthy diet and getting regular exercise can actually diminish the symptoms.

“I really want to stress that that is first-line treatment for polycystic ovarian syndrome,” she said. “Ten per cent weight loss in those with PCOS who are overweight leads to ovulation.”

Making these changes isn’t always easy though — people might want some help from a dietitian or other health professional, which can be hard to find, she said.

To regulate the menstrual cycle, or deal with acne, doctors might recommend a birth control pill, which targets the hormonal imbalance. Kirkham noted that sometimes symptoms can return if someone stops taking the pill, but hasn’t made any lifestyle changes.

For someone who doesn’t want to be on birth control, Kirkham said, doctors might prescribe a dose of progesterone so that the uterine lining gets shed every few months, which would cut the risk of uterine cancer.

“Women should have a period at least every 90 days and that’s usually the minimum treatment that we offer is a medication that allows them to shed that lining every 90 days,” Todd said.

Some women are also prescribed Metformin, which is a medication often used to treat diabetes by reducing circulating insulin, she said.

Women who want to get pregnant might be referred to a fertility specialist for a medication to trigger ovulation, Kirkham said.

Todd urges women to monitor their cycles and seek medical advice if they notice something unusual.

“I think the most important message of this is that women should be tracking their menstrual cycles because I do believe it’s as important of a vital sign as your heart rate, your weight, your blood pressure.

“And women should know that normal menstrual cycles occur every 21 to 35 days. And if you’re not in that window, that’s a reason to go see your health care provider.”

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