The month of September is Polycystic Ovary Syndrome (PCOS) Awareness Month. As it affects between 6 to 10% of all women across the world, we will be having voices from across the community share their experiences of the syndrome from the diagnosis through to having a child.
When I was first given my diagnosis of PCOS, it was while I was going through what we thought was a miscarriage but turned out to be an ectopic pregnancy. To say that I had other things on my mind is rather an understatement. I accepted the nurse practitioner’s word. I didn’t ask questions or request details. I knew that she looked at my blood tests and ultrasound results and was confident that I had PCOS.
I don’t know who was the first to say it but as I started telling people about my diagnosis, I got several responses along the lines of, “Really? You don’t look like you have PCOS.” The less tactful were more direct. “But you aren’t fat,” they would say. As though weight was the be-all, end-all of PCOS. I even had one doctor, who was problematic for many reasons, say, “You don’t look like you have PCOS. Did they confirm it with blood work and imaging?”
I have to be honest. Understanding the diagnosis itself was not my priority. I wanted to know what my treatment options were. I was focused on getting pregnant, not the overall state of my body. I knew that PCOS was linked to insulin resistance. My father is a diabetic and I have struggled with episodes of low blood sugar since my teens. I wasn’t sure how this all fit together, but it made sense to me.
I also learned some of the telltale physical features linked to PCOS: overweight body, excess body hair, masculine features. I had none of those. I didn’t look the part. Yet medical science was saying that I had PCOS. And it explained why I wasn’t getting pregnant: the hormonal imbalance caused by PCOS explained my wildly fluctuating cycles and suggested that I wasn’t ovulating every cycle. The way I looked didn’t matter.
I don’t remember when I first heard someone refer to people like me as having “skinny” PCOS. But I remember it angering me. I remember feeling like the term managed to diminish both women like myself and overweight women with PCOS. It also played games with my body dysmorphia. At the time I was diagnosed and throughout treatment, I was clinically overweight. Many people didn’t believe me when I told them that, but I was in the overweight category based on BMI. My brain knew this. My brain saw my body as overweight, regardless of what others saw. So being not only described as skinny, but dismissed because of it, caused quite the cognitive dissonance.
I don’t know what PCOS means for my future. I don’t yet know if we will try to have another child. I don’t know if I will struggle to convince other medical professionals that I have a serious diagnosis. What I know is that this condition brought me grief as cycle after cycle failed to produce a pregnancy. It brought false hope when a cycle would last beyond the expected length and I would hold my breath before looking at the stark white negative pregnancy tests. It brought struggles with scheduling doctor appointments that needed to happen during specific times in my cycle. But it also brought me treatment in the form of Femara (aka Letrazole) and the sexy-as-it-sounds timed intercourse. And that finally brought me my son.