What Every Woman Needs To Know About PCOS

It’s one of the most underdiagnosed disorders around

by Tamim Alnuweiri

Knowledge is power. Remembering this has become increasingly vital to the survival and rights of women in America as we face an unsure and terrifying next four years. As women’s reproductive rights continue to come under alarming attack and scrutiny, we need to make sure we’re prepared and informed. Which brings me to an extremely overlooked and underdiagnosed disorder affecting 5 to 10 percent of women between the ages of 15 and 44: Polycystic Ovarian Syndrome (PCOS).

I was diagnosed with PCOS at the relatively young age of 18. The road to my diagnose was long, tedious, and frustrating, but ultimately, not as bad as many other women’s. At the very least, I have been diagnosed, whereas more than 50 percent of women are never diagnosed at all. 

For most of my post-pubescent life, I’ve struggled with my weight, had terrible all-over acne and completely irregular and (what I imagine to be) childbirth-like painful periods. I could never tell when I was going to menstruate—sometimes it was twice a month, other times it wasn’t for months on end. While it seemed like a mild grievance, when I eventually got myself to an OBGYN, I had an ultrasound done which revealed multiple cysts on my ovaries and led me to Dr. Michelle Warren, the founder and medical director of the Center for Menopause, Hormonal Disorders and Women’s Health in New York City, who officially diagnosed me with PCOS. 

But before I get ahead of myself, here's some basic information: According to Dr. Warren, PCOS is, in layman’s terms, an inherited hormonal and metabolic disorder with symptoms and side effects that can include irregular periods, diabetes, infertility, and higher chances of endometrial cancer.

These are some pretty dire consequences, and yet despite the fact that it’s 2017 and we have some pretty advanced medical science and technology at our disposal, PCOS is still super undiagnosed. Why? Well, one big problem is that, for most people, the symptoms are so vague and seemingly random that they look like a bunch of little problems instead of one big one. Some of the symptoms are more obviously related to reproductive health, like irregular or extremely painful periods, but others are harder to recognize as being similarly related and include things like an increase in acne and facial and body hair (but also hair loss) and difficulty with weight gain (or, on the other spectrum, obesity). These oftentimes contradictory symptoms (many of which just sound like the bad parts of puberty) are so difficult to tie to a disorder that many women aren’t diagnosed with PCOS—if they’re ever diagnosed at all—until they have trouble getting pregnant.

Another problem is that a lot of OBGYNs and doctors aren’t always looking for PCOS, and since there isn’t exactly one aha symptom, whose early recognition will save you from years of pain and suffering, it's relatively hard to diagnose.

But if reading about it here makes you suspect that you or someone close to you is suffering from PCOS, Dr. Warren recommends going to a PCOS-friendly doctor, someone who knows what to look for in regard to PCOS or endometriosis and isn't inclined toward dismissing women's health concerns as being "hysterical." Unfortunately, even today, that kind of thing happens a lot, and many women’s severe period pains and other symptoms are often dismissed as “normal,” when they're anything but.

While there isn’t exactly a cure that will completely rid you of PCOS, there are ways to mitigate and manage the disorder, including options ranging from specific types of birth control to insulin treatments. The only way to find a good treatment, or to know if you have PCOS at all, is to see a specialist for diagnosis and treatment as soon as possible. In the meantime, stay healthy and informed. Knowledge is power, and now is as good a time as any to get smart about your health.