Alisa Morse – Overland Park, KS

September means more than Pumpkin Spice Lattes and Back to School season for some women. September is Polycystic Ovary Syndrome (PCOS) Awareness month. Not many people know this – I didn’t know until last year. And until recently,  the Septemeber Wikipedia page covered 11 other causes, but unsurprisingly forgot PCOS (Don’t worry, I fixed it).

You probably haven’t seen PCOS Awareness infographics and videos on your Facebook, Twitter and Instagram the way you do for National Chocolate Chip Cookie Day. Don’t get me wrong – I live for chocolate chip cookies, but this absence further illustrates how little PCOS is recognized. Polycystic Ovary Syndrome is a hormonal disorder that affects about 5 to 10 percent of all women.

download
Click for full image

When PCOS was first identified in 1935, it was misunderstood – and still is in some places. Gynecologists Irvin F. Stein and Michael L. Leventhal originally described PCOS as the presence of multiple ovarian cysts resulting in anovulation (absence of ovulation). These two factors became the standard with which women were diagnosed.

Well, nice try gents, but your 1930 science doesn’t hold up. The trouble is many women experience multiple cysts or anovulation, but do not have PCOS. Some are still misdiagnosed because of this assumption. Today, multiple tests exist to aid identification and diagnosis.

Though PCOS is a disorder without a known cause, doctors and scientists have identified many factors, signs and symptoms that lead them to believe the condition affects multiple systems in a woman’s body, including the endocrine and reproductive systems.

At the root of these systems are insulin and androgen levels, which affect more than just ovulation. Many women experience both outward and inward effects, like excess coarse hair growth on places like the face and tummy because of high androgen.

cystMy personal nemesis? Cystic acne, a result of elevated androgen hormones. It’s terrible and most times there’s nothing I can do about the giant marbles and red horns that jut off my face. I’ve learned to accept it with age, but good lord was it hard in college when everyone else’s hormones had settled into gorgeous, smooth skin.

Acne is infuriating, but it’s the least of the problems for women with PCOS. Insulin levels are perhaps the most dangerous. You’ve probably heard of insulin in connection with diabetes – Women with elevated insulin levels are at a higher risk for Type II Diabetes and obesity, and we all know obesity carries a semi-truck full of health risks on its own. More than 50 percent of women with PCOS are obese.

When combined, anovulation, obesity and elevated insulin levels create the perfect storm for endometrial or uterine cancer. The big C. Cancer, along with infertility, is the scariest part of having PCOS, according to most of the women I know.

All in all, we know little. We all experience PCOS differently; we have infinite combinations of symptoms. We learn to cope with them the best we can.

pcos-aware2Cysters (as many of us call our collective selves) struggle daily with the superficial, medical and emotional effects of PCOS. Many of us were never made aware of our options or the way our lives would be affected daily.

For those of you looking for a basic yet thorough breakdown of the systems affected, how they are connected and why they matter, go here.

How can you help? Please share and spread awareness of Polycystic Ovary Syndrome this month and every month. A friend, relative or Facebook friend of yours may find answers because you said something.

I want to say a huge THANK YOU to the brave women who have contacted me over the last month sharing their PCOS stories. Remember there is strength in numbers and friends. You all are incredible, you are strong and you radiate light from within.

CLICK HERE to read Alisa’s PCOS story.