Why women should know about polycystic ovary syndrome

In some ways, Sasha Ottey was lucky.

For many women with polycystic ovary syndrome (PCOS) like her, it can take years and untold doctor visits before they get a correct diagnosis. All too often, doctors end up treating the vast array of symptoms caused by the hormonal disorder. Severe acne. Sleep apnea. Obesity. Or thinning hair and excess hair growth on the face or body.

But Ottey’s OB-GYN pinpointed her illness in 2008 after just two missed periods and one visit. Problem is that was it.

“She gave me a pamphlet, referred me to an endocrinologist and said, ‘Come back to me when you are ready to conceive,’ ” Ottey recalled recently.

When she followed up with the endocrinologist, Ottey, then 28, was told to lose weight and come back in six months.

“I decided I needed to see a nutritionist, but my insurance wouldn’t cover that because I was not a diabetic,” she said.

Ottey, then a research microbiologist for the National Institutes of Health based in Bethesda, Md., began digging deeper into PCOS and soon realized the syndrome is one of the most pervasive and underserved public health issues threatening the mental and physical health and quality of life of women and girls.

Ottey decided then she had to do something and within months of her diagnosis in 2008 founded the PCOS Challenge: National Polycystic Ovary Syndrome Association, a nonprofit which works to raise awareness about the condition and help girls and women with the condition overcome their symptoms and reduce their risk for related diseases.

Besides the dearth of resources and evidence-based information about PCOS, Ottey, executive director of PCOS Challenge, discovered there was little funding allocated for research and few doctors even aware of the syndrome.

“This is a platform for people to learn accurate information, get support and to empower themselves as advocates for the cause,” Ottey said.

The lack of support she felt from her doctors became a defining moment in her life. Ottey, who moved to Georgia in 2012, decided to leave her lab coat behind and respond to what she believes is her calling: ensuring a better future for those impacted by PCOS.

“In retrospect, many of the symptoms — the acne, thinning hair and weight gain — I experienced growing up were directly related to PCOS,” she said. “This isn’t just a reproductive health issue. This is a lifelong condition and it leads to some of the heaviest burdens on health care. I know many people who have lost their jobs, lost their relationships because of PCOS, so there’s a tremendous and urgent need to address PCOS and take it seriously.”

The good news is interest in PCOS among lawmakers here and across the country is increasing.

In December, the U.S. Senate, in response to PCOS Challenge’s advocacy efforts, unanimously passed a resolution to recognize the seriousness of polycystic ovary syndrome, and designate September as PCOS Awareness Month.

Then just weeks ago, U.S. Rep. David Scott, D-Ga., and 37 other leaders in the U.S. House of Representatives reintroduced a U.S. House version of the resolution.

According to Dr. Mark Perloe, medical director at Shady Grove Fertility Atlanta, nearly 15 per cent of women have been diagnosed with PCOS, which can lead to infertility, Type 2 diabetes, cardiovascular disease, cancer and other life-threatening diseases. More than 50 per cent of women who have PCOS don’t know it.

Symptoms can emerge in girls as early as puberty — age 13 or even younger — while others may not show signs of the disorder until much later in life, or after substantial weight gain.

The vast majority of women don’t receive a diagnosis until they are struggling to get pregnant.