I remember when I was in middle school and all my (girl) friends started getting their periods. They were maybe 12 or 13 years old; one even got her first period when she was 11. As a uterus bearer, I naturally wondered when I would get my first period, since we were taught in school that during the teenage years our bodies would change and develop from girls to women. By the time I turned 16 and still hadn’t gotten my first period, I had a suspicion that my body wasn’t like that of other girls. 

I shouted at the top of my lungs, “Yes, I’m normal!”

I waited and waited, mentally accepting that maybe I just wasn’t ever going to get my period and experience the menstrual cycle, until one day while I was on the toilet I noticed some blood. I was 16 and a half and I thought, there it is! I shouted at the top of my lungs, “Yes, I’m normal!” However, after that first period I didn’t bleed for another half year.  I thought, okay, my menstrual cycle just needs to stabilise and then it will become a regular cycle like so many of my fellow uterus bearers have. I was 16 and while I knew that it was a much later age than usual to start experiencing my menstrual cycle, I thought, it happens. Nothing too strange about it. However, when I told friends and family about my menstrual cycle experiences, I could tell by their reactions that perhaps what I had been experiencing, or not experiencing rather, might be something to investigate more. As any curious person would, I started googling things like “irregular period” or “non-existent period.”

I started reading about hormonal disorders affecting the menstrual cycle. I came across a condition called polycystic ovarian syndrome, or PCOS for short. Symptoms of this condition include: Irregular/non-existent periods; acne; increased weight gain or difficulty losing weight; increased testosterone levels and increased risk of cervical cancer due to increased testosterone levels [1]. 

“Yes, it’s the classic cysts on the ovaries. Very clearly PCOS.”

Suspecting that PCOS could explain why I rarely experienced periods, I went to the doctor to confirm it. During an internal echo, it was discovered that my ovaries were covered in cysts.  The gynaecologist who came to give the diagnosis looked at the screen and said, “Yes, it’s the classic cysts on the ovaries. Very clearly PCOS.”

While I felt relieved to have a clear diagnosis of what caused my body to be the way it was, I also felt a sense of sadness. I felt a sense of loss, learning that I most likely would not be able to conceive a child naturally, or that it would be difficult for me to do so. I felt a  sense of frustration at, once again, having something that made me feel different from other women. I always thought my body was different, from having scoliosis to hydrocephalus to now, this.The PCOS diagnosis confirmed my worries that I really was different. 

I am now 23 years old, and since my diagnosis I have learned a lot about PCOS. I’ve learned to adjust my lifestyle to minimise the effects of PCOS, such as changing the exercise I do and the food choices I make every now and then (I can’t give up some guilty pleasures!).While the root cause of PCOS is unclear, the syndrome affects 5-10% of women worldwide [1],  making it the most common hormonal disorder amongst women. I hope that by telling my story people are more aware of PCOS and I hope that increased research can lead to a cure for this disorder. 

Footnotes

[1] https://www.degynaecoloog.nl/onderwerpen/pcos-polycysteus-ovarium-syndroom/