I thought I was going crazy. I kept telling doctors that I was sleeping hours longer than was normal, I had weird black spots under my arms, and my hair was falling out like mad. It still took a year to find someone who knew what was happening. A dermatologist, who reassured me that the spots weren't some kind of strange armpit cancer. She was shocked that nobody was taking me seriously and promised to go to bat for me if I still couldn't find help. When my blood work came back after that, my doctor was stunned at how high my insulin levels were and in his millions-of-years career had never seen insulin that high in someone.
Unfortunately, that was only the beginning of the struggle to get care. I've never met a doctor who agreed with others about the cause of PCOS. Some even blame me for it. Most aren't interested in helping. Maybe it isn't exciting enough. Maybe it is easy to ignore something you think a patient has done to themselves.
The reality of PCOS is that it is a group of symptoms that are both irritating and dangerous in the long term. My hair falls out. My skin breaks out like I'm still a teenager. My skin is darker where there are creases on my body. I will struggle with infertility and ability to carry a biological child (I have already skipped ovulating and menstruating for 4 years consecutively). I carry excess belly fat I cannot shed with normal, healthy means, while the rest of my body does not. There is a real risk that the insulin resistance PCOS comes with will harden my arteries and eventually kill me.
My grandmother died from heart and stroke disease and her mother before that died from a heart attack in her sleep. Looking at their health histories now, it is very likely they also had PCOS. It is scary to know that this could shorten my life and have it treated as a mere annoyance and cosmetic issue.
I am on my own with this, clawing for even a bit of success at keeping the symptoms at bay. I'm not the only one. About 10% of women in Canada have PCOS, which is a significant percent of the population Despite the numbers and the troubling symptoms, it isn't treated as a serious medical issue. Women have to rely on themselves and on other women with PCOS to try and keep their bodies healthy and their symptoms in check.
Doctors need to step up and take PCOS and the health of their women patients seriously. When you treat something that affects our whole well being as insignificant, you are treating us as insignificant.
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