PCOS and Me
By Sarah McClure
It was my sophomore year of high school when I realized something was wrong.
I didn’t pay too much attention to my period but I noticed it was suddenly late by months at a time. I remember hoping and praying that it would come and I wouldn’t be pregnant, that I wouldn’t have messed up my life that badly. I was so scared to go to my mom about it—at 15 years old, I was sexually active with my then-boyfriend and was afraid of my mother’s wrath, and that of God (I was raised Catholic and was very religious at the time).
I think it wasn’t until late junior year when I was finally single that I told my mom my periods were inconsistent. I had started to put on a bit of weight, which was noticeable because I used to be very skinny, so my mom attributed it to me needing to eat better. I was presented with all sorts of excuses: you’re doing more physical activity so it’s making your period late, you're not doing enough physical activity and that’s making it late, you’re not eating well enough… but I knew it wasn’t any of those things. I didn’t get the chance to go to the gynecologist until my mom brought me before I went off to college.
One blood test later, I was told I had polycystic ovary syndrome, or PCOS.
From there it was a nightmare of trying hormonal birth control pills with horrible side effects: weeks of bleeding with a few days break in between, horrible cramps, terrible depression and exhaustion… all to make my periods regular. I felt so alone and confused. Was all this suffering really worth it?
There were other side effects from my PCOS that the pills helped with, ones that I experience full force now that I’ve decided to stay off medication for about a year. Hormonal acne, difficulty sleeping, brain fog, constant sugar and general food cravings, heart palpitations, difficulty losing weight… and of course, irregular periods. Not to mention the increased risk for diabetes, heart disease, and strokes, to name a few.
After being off medication for about a year, my friends and boyfriend encouraged me to see my gynecologist again. I hadn’t gotten my period for months, and even though my mental health was better, it started to take a turn due to my appearance. I chose the earliest appointment at the office without regard to the doctor I was seeing–a male gynecologist. Boy, was that a wrong move. After anxiously awaiting the appointment, excited to finally start managing my menstruation again, the male gynecologist scoffed when I told him I had PCOS.
“They call anything PCOS these days. Who diagnosed you?”
“You guys did, in 2018.”
“I don’t see that on your chart.”
“Well, it was you guys. I’ve only ever come here. You’ve also prescribed me a bunch of different pills that didn’t work for me, or had bad side effects like depression.”
“I don’t see anything about that here. I think you have thyroid issues. You should see an endocrinologist, and I’m putting you on my favorite hormonal pill. I give it to anyone who is having irregular periods.” (I didn’t know male gynecologists had favorite hormonal pills.)
What followed was a series of blood tests with enough vials to make even the most hardened person pale nervously, waiting for an endocrinologist appointment for months, getting an ultrasound of my thyroid done, only to be told I didn’t have thyroid issues. Pissed that my time had been wasted, and still with no period (I stopped taking the pill that man prescribed me because it made me not want to do anything), I swore I would never see a gynecologist from that office again.
Thankfully, when I moved down to South Jersey recently, I started seeing a new gynecologist at the Cooper Ripa Women’s Center in Voorhees. I can’t believe I ever put up with the treatment from my last place! I was quickly given all the tests and ultrasounds for PCOS, and was told I do have it (duh!). I was even given alternative treatments I didn’t even know could be used and were never offered to me before in the form of a hormonal IUD. While dreadful, I’m happy to say I’ve gotten my first period of 2023 this September and I’m on a pill that doesn’t make me miserable!
When I began to talk about my PCOS more frequently, I found that many people I knew were also diagnosed with it. I found other people willing to share their stories, which made me feel less alone. This led to more conversations about periods and menstruation and eventually, period poverty and menstrual equity. I did more research and have acted in ways that will help reduce my risk for disease and help with my symptoms.
Part of Flow Forward NJ is education, not only on periods but also on all things related to menstruation. I want others to know that they are not alone in their diagnosis. We should not be ashamed or silent when it comes to our struggle with PCOS. The more we talk about it, the more we can advocate for research into discovering new treatments for this disease and make sure the conversations about PCOS do not stop. I always try to initiate the conversation and get those around me to open up now, especially about PCOS. There is something so reassuring about hearing others' experiences, and it’s like a weight off your shoulders to finally share your story.
I started Flow Forward NJ so women and girls like me will know they’re not alone. So that all people, regardless of income, will be able to address their menstrual health with dignity and confidence. We are a community who are not afraid to stare the stigma in the face and try to dismantle them. It’s my hope that all bathrooms across the state, and across the country eventually, will offer accessible free products to those who menstruate.
This is my story. What’s yours?
