PCOS: The little-understood syndrome affecting 1 in 10 women

At the age of 16, Tanya Laube had acne all over her chest, face, and back, and although she wasn't eating more than average, she had trouble controlling her weight.

"I suspect you have cysts on your ovaries," her doctor said. An ultrasound proved the diagnosis right. The doctor didn't put a name to her condition; it was the late 1980s, and information about polycystic ovary syndrome (PCOS) — which Laube would later find out she has — wasn't widespread. Laube was prescribed a birth control pill.

Although PCOS affects up to 13 percent of women of childbearing age, many do not know it exists. It is a hormonal disorder marked by irregular and infrequent periods, excess body hair, stubborn acne, and lack of ovulation. Women with PCOS are more likely to struggle with their weight — around 80 percent of those diagnosed are obese.

Cysts common

Some women with PCOS, like Laube, have cysts on their ovaries. Although this is a classic sign of the disorder, it's not necessary for diagnosis. The only feature necessary for a PCOS diagnosis is higher androgen levels, which can be tested by sampling the blood.

Considered "male" sex hormones, the most well-known example of an androgen is testosterone. Although men carry these hormones in higher amounts, women have androgens too — in fact, too-low levels of androgens can cause problems for women, resulting in low or nonexistent sex drive, fatigue, and muscle loss.

But too high levels can cause unwanted symptoms that can be hard to treat.

Diane 35 and metformin

In the following years, Laube didn't think much about her cysts. She liked that she'd been prescribed birth control — it meant she could have sex with her boyfriend without too much worry.

She moved to Germany from her home country Canada at the age of 21. During her first year in Europe, she used the birth control she'd been prescribed back home. Once that ran out, she found a German gynecologist who prescribed her Diane 35 — a birth control pill the doctor called "the strongest on the market."

"I took the Diane 35, and I had migraines; I had such strong periods. I had terrible cramps, I was losing more blood than I had even in my body … but without the Diane 35, I had no period, and I was losing my hair," she said.

Diana 35 is no longer prescribed as a general birth control pill but is still one of the more common medications prescribed to women with PCOS, cystic acne, and hirsutism (excess hair growth).

By the time she turned 26, Laube started looking for a different type of treatment. It was the mid-90s by then, so when she went to her office, she could use something new: Google. For the first time in her life, Laube could put a name to her condition. She messaged doctors — dozens of them — seeking anything to make her situation more bearable.

Eventually, she got a response from a US-based doctor who advised her to try metformin, a diabetes drug now often prescribed to PCOS patients. This was still the early days of PCOS awareness, so the idea was new, and Laube's German doctors advised against it. Still, she asked her mother to send metformin from Canada. She took it. Within weeks, her period returned, and two months later, she was pregnant.

At some point — probably because Laube was so persistent about wanting information, she said — the doctors from Hamburg sent her to Onno Janssen, a doctor from Essen studying the possibility of treating PCOS with metformin. Over the course of the next two years, along with around 200 women with similar symptoms, Janssen taught Laube about her condition.

Together the women, Janssen, and other doctors in his department formed Germany's first national "PCOS self-help group." Laube gets online messages frequently from women looking to understand their symptoms — she says it is almost always the same. Slingshot from one doctor to the next; the women sometimes cry with relief after speaking with Laube and learning they aren't alone.

Where does PCOS come from?

Laube's condition matches the profile of the typical PCOS patient almost to a T. She is Native American (African Caribbean, Native American, and South Asian women are all more likely to have PCOS). Her daughter has the syndrome (doctors think it's genetic). She's had weight issues, acne, and hair problems.

But there is no one-size-fits-all solution for PCOS. Although metformin worked for Laube, for others, the side effects render the medication unusable. Although Diane 35 didn't work, for others, it does. For each patient, treatment involves a (sometimes painful and laborious) trial-and-error process until something sticks.

"For almost 90 years, there have been no approved medications or treatments specifically for PCOS," says Sasha Ottey, head of PCOS Challenge, a US-based group aimed at raising awareness of the syndrome, which is not curable or contagious. All women with PCOS were born with it.

While it's easier now to get a diagnosis than two decades ago, women are often diagnosed and given no information — or misinformation — about treatment. Some, like Ottey, are told to lose weight and come back later. Others are told they are infertile, which simply isn't true, says Colin Duncan, a PCOS expert at the University of Edinburgh.

"When I see patients in the clinic, a lot of them have been told that they will not have children," says Duncan. "But actually, women with PCOS, even without any treatment, will often have children because they do ovulate every now and then. And I think that people get over-anxious about that."

Weight problems and mental illness

Duncan says that fertility aside, what worries him most about PCOS is the weight aspect, because it is unpredictable and often out of the control of the woman herself, which can trigger serious mental health problems.

"The question is: Why are women with PCOS more likely to be overweight? The answer is not because they eat too much or exercise too little. That's too simplistic."

If you look at women's diets with PCOS, most of the time, they don't eat any more than anybody else does. And if you look at physical activity, they don't seem to be doing much less than anybody else is."

He explains that this happens because women with PCOS have a lower energy expenditure, potentially due to their higher levels of insulin.

"They have less ability to burn off calories, so their energy expenditure is less and that means it is not a level playing field. They have to exercise 20% more or eat 5% less every single day to be the same as anybody else."

This lack of control can cause serious problems for women with PCOS, Duncan says. Patients are four times more likely than average to have an eating disorder, and depression rates are also reportedly higher than average.

And lack of understanding of PCOS among medical professionals only makes things worse.

Women Ottey knows with PCOS "feel judged and stigmatized and not believed and not listened to and not heard. A lot of patients said their doctors have told them that they're lying when they report what they're eating or their physical activity," she says. "It's not the same for people with PCOS. Our metabolisms are different."

Edited by: Rosalie Delaney