PCOS: The woman’s disease I’d never heard of until I learned I had it

When I was about twelve or thirteen, my body started doing some really weird things to me. And while most people’s bodies do weird things to them during adolescence, mine decided to develop something of a mean streak. Out of nowhere, this thick, coarse patch appeared on my lower abdomen, and dark hairs started sprouting on my face. Meanwhile, the hair on top of my head was growing sparse and mousy. I didn’t have my period for months at a time, and when I did get it, it lasted for weeks. Once, it hung around for the entire month of August. And even though I was always a rather pudgy kid, I continuously gained more and more weight.

After much of what seemed like trial and error, and a whole lot of blood draws, my doctors eventually concluded that I had a disease called polycystic ovarian syndrome, also known as PCOS. What is this disease, and why do many people — including doctors and many women I’ve known — not know a lot about it?

Firstly, the name itself is somewhat misleading. An ovarian cyst is a fluid-filled sack on the ovaries. However, in women with PCOS, these sacks also contain immature egg cells. So, it is not a disease that causes cysts, per se. Rather, it prevents women who have it from ovulating properly.

Another reason why we don’t hear much about PCOS is that researchers have not been able to identify a specific cause of the disease. However, according to the Mayo Clinic, there may be three main factors that play a role in causing the disease: low-grade inflammation, genetics, and overproduction of insulin. Both inflammation and the excess insulin have been shown to make female bodies produce too many male hormones, which in turn prevents proper ovulation, resulting in cysts. Since women with mothers and sisters with the disease are more likely to develop the disease as well, scientists are searching for genes that could cause the disease.

But the main reason that we don’t know a lot about this disease is that it is something of a weird animal. It affects women differently, and many of the symptoms of PCOS often appear unrelated to each other.

In my case, it has been a rather dynamic condition. I started with irregular periods, abnormal hair problems (for example, I still have too much where I don’t want it and not enough where I do), some acne, and weight problems. With the help of birth control pills, my cycles and acne problems have become much more controlled, but they haven’t gone away entirely. I have also developed insulin resistance, which means my body’s cells are resistant to the effects of the hormone and has to make more insulin in order to function properly. 

My symptoms are also much worse when I’m stressed. When things are going well for me, weight falls off no matter what I eat. My skin is clear and my hair looks fuller. However, as soon as I start to worry about something, it all goes to hell in a hand basket. My skin starts to erupt like Pompeii. I can eat right and exercise, and still gain weight inexplicably. My head hair starts to thin, and as far as facial hair is concerned, let’s just say that on a good day I look a lot like Frida Kahlo. Sometimes, if my stress is strong enough, my cycle will do all sorts of wonky things like come twice in one month or hang out for three weeks, despite being on birth control. And yet, someone else with PCOS might not exhibit these symptoms. I have known people who don’t have any other symptoms but weight problems and irregular periods.

Does any of this sound familiar? If so, please talk to your doctor as soon as possible. If left untreated, PCOS can lead to other complications, like type II diabetes, sleep apnea, uterine cancer, and heart problems.While there is not yet a cure for PCOS, there are quite a few effective treatments. Trust me, your body will thank you.

Kirsten Dearden is a cat mom, self-taught cook, and barista. She’s a northern girl who recently moved to the South. When she’s not crafting homemade treats or tasty coffee, she enjoys reading, marathon watching shows on Netflix, gaming and drinking green tea.

(Image via Yelena Bryksenkova.)

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