It is a disorder that affects one in ten women. It can occur in women of any race or nationality, causes side-effects which range from inconvenient to crippling, and is the leading cause of infertility among women of reproductive age. Yet mention its name to most people, and they have no idea what you’re talking about.
It’s called PCOS, or Polycystic Ovary Syndrome. And I’ve got it.
No two women appear to experience the disease in the exact same way, so being positive for PCOS can mean many different things. For me, it means I will forever be battling my body for balance. Having PCOS means I’m slightly insulin-resistant, which leads to weight gain and, if not controlled, diabetes. To manage these insulin spikes, I take two different medicines which I will essentially be on for the rest of my life.
I’m actually one of the lucky ones, however, to only deal with insulin resistance. Some of the other side-effects of PCOS can be far more debilitating and tougher to hide. Hirsutism, or unwanted body hair, is a common side-effect, which results in women growing hair on their faces and bodies like men. I’ve seen pictures of twelve-year-old girls with beards full enough to put most men to shame. Other women may suffer alopecia, which results in thinning of the hair on the scalp and, eventually, male-pattern baldness. Skin irritations are another factor, including darker patches on the skin, which are a sign of insulin resistance, and seborrhea, which causes itchy, flaky, red skin.
PCOS can also have long-term side-effects. It can increase the likelihood of cancer, especially endometrial cancer, and can result in infertility or miscarriage. It is connected closely to obesity and diabetes. On top of everything, there is no cure. Once determined PCOS-positive, all a woman can do is treat the symptoms and hope for balance.
It is still not known what exactly causes women to develop this disorder, although some researchers believe it has much to do with genetics. While this is not proven, I definitely buy into that theory. Many of my aunts on my dad’s side of the family struggle with the insulin-resistance as I do, and I have a cousin who is in great physical shape but is already beginning to show signs of alopecia (as well as gestational diabetes, which she was fortunately able to shake off after her pregnancy.)
Being told you are PCOS-positive is not an easy thing – the disorder’s name alone is enough to scare many women. I still remember how I felt when the endocrinologist told me I had Polycystic Ovary Syndrome. I had never heard of it before; although I had been coping with some weight and skin conditions for much of my life, no one had ever tossed that disorder out as the source of these issues. The idea of it though, the thought that I had a syndrome, terrified me. All I could think was, I have cysts? I have cysts on my ovaries? What is happening to me? I nearly cried right there in the examination room.
Now, many years after the fact, I’m not as frightened of the concept. It took me a while to understand that the lax lifestyle I once led would lead to complications which might kill me if I didn’t change something. The knowledge that I would have to change the way I lived – permanently – was scary. But now I’m learning to do what I can to keep balance in my body and prevent this disease from owning me.
Article comments
1 - Sheri
I wish I had someone tell me about PCOS when I was younger. I was admitted into the hospital with stomach pains, told I had cysts that were 'no big deal' and put on the pill at 17 years old. Now, another 17 years later, I am struggling with one miscarriage and infertility. Very well written article. Thanks.
2 - Lisa Solod Warren
I was diagnosed with this more than 30 years ago, told I would never have kids, suffered a lot...but lo and behold, I had two kids, both wanted, and only one with the "help" of clomid. Now that I am menopausal the disease seems to be causing some problems, but, it is manageable. Good luck with it! I had to tell my then husband about the possible no children thing, but it worked out in the end. Treatment is possible. If it gets too bad, the cysts can be "popped" (sounds awful, I know, but is minimally invasive and I had worse things than that done. Good for you for writing the piece.
3 - katie
This article was really helpful for me. I am in college too and just got diagnosed last semester. I'm IR but my doctor wants me to try controlling it with diet for now but I get so frustrated because I'm eating 1200 calories a day and working out an hour everyday and nothing seems to change. I've tried going to PCOS support websites but most of them focus on infertility/pregnancy. It sounds shallow but I just want to be pretty. My sister weighs like 120 lbs and is three inches taller than me. I feel like the ugly troll sister. Sometimes I leave the gym crying because while I know what I'm doing makes me healthier, I'm still really overweight!