Getting a diagnosis that helps explains your life can be liberating, but that liberation can go hand-in-hand with pain and fear. When I was 24, I was diagnosed with Polycystic Ovarian Syndrome, or PCOS for short. Its main cause is hormone imbalance and it effects 1 in 10 women, but before getting diagnosed, I’d never heard of it.
It was 2015, I was very stressed at work,and tension headaches were my new normal. I finally went to see a doctor about it, a young male walk-in doctor who was kind and patient with me and listened to the complaints about my headaches. At the end of the appointment, he gently started asking me about my periods. I was a bit taken aback as I was there about my head not my vagina. But I answered: no, I don’t regularly get my periods, maybe only about 3 times a year. After hearing my answer, the doctor told me that there might be a reason for my missed periods. He pointed out the hair growth on my face (as politely as that can be pointed out), my body shape, and my stress levels. He suggested I book an appointment with my regular doctor to talk about polycystic ovarian syndrome. He also gave me a script for massage for the headaches and sent me on my way.
Of course, I immediately googled 'PCOS.’ The internet is a scary place to look for a diagnosis, and this was no different. According to the internet, infertility was the common theme—having PCOS meant you couldn’t have kids, would have masculine pattern hair growth and/or balding, and be overweight. As a woman who had always felt feminine and had dreamed of one day having a family... this news was a blow. I cried the whole way home.
Out of fear, it took me a long time to seek out an actual confirmed diagnosis. I started seeing a naturopath who recommended a few supplements, changing my diet, and exercising more. I took the supplements. I finally had the blood tests and ultrasound that would confirm PCOS. I had higher than normal testosterone levels, and many small “cysts” in my ovaries—about 12 in each. Oddly, while the syndrome refers to polycystic ovaries (literally many cysts on ovaries), the cysts aren’t the be all and end all for PCOS. You can have PCOS with no cysts, and honestly, they aren’t really cysts at all. They’re more accurately small fluid sacs of old eggs that your ovaries did not have enough hormones to push down into your uterus. Sometimes they can burst, and it can be painful; for me, it can feel like a swimmer’s cramp or diarrhea pain (just in my ovary and not my colon).
My periods are starting to get more regular, finally. I’m at about 45 days per cycle, which isn’t terrible. It’s a relief for my body to have a cycle at all. Honestly, I feel so incredibly grateful on the first day of my period—pain or no pain. I know that my period brings all the hormones my body has been missing, soI feel happy, horny and productive. It’s the best week of the month! I know, that sounds strange, doesn’t it?! Having PCOS has really changed my relationship to my period because it’s one I actively try and cultivate now, even though it can be hard. I still have a long way to go on the lifestyle part;eating right and exercising are truly the only proven ways to improve PCOS symptoms, and I still suffer a lot of them. My symptoms consist of masculine pattern hair growth on my face, stomach weight and bloating, and additional complications from my hormones not being in balance (think aura migraines and swollen ankles, trouble sleeping,etc).
PCOS effects my life and wellbeing in more ways than I can lay out here. But at the same time, I’m still able to lead a normal happy life. If you’ve just been diagnosed with PCOS or if you’re struggling with your diagnosis, just know that you’re going to be okay. And you aren’t in it alone. Information can be your best ally, and I recommend checking out the following resources (and staying away from google):
Period Repair Manual, LaraBriden
Read if: you’re not in love with the idea of birth control and you want a sustainable way to manage your period health
Taking Charge of Your Fertility, Toni Weschler MPH
Read if: you’re actively trying to get pregnant, or want to know more about fertility and PCOS