“Adults at school, even after my diagnosis at 14, looked at me like I was making the pain up.”
When I was 13, I got my first period. At first, it seemed a pretty normal experience as to the limited education I received on what a period would be like. I remember discussing who was the last girl to get her period in school like it others thought it was strange we hadn't synced up and were not all the same.
In that year, things changed really quickly for me. Pain became unbearable. My anxiety turned into depression. I felt sick all the time, even when I wasn't actively bleeding. I thought for a long time that this was normal. I watched other girls in my class, who I'm still friends with today, cry in pain, need hot water bottles, go home from how severe it was.
Looking back, they also had PCOS and Endometriosis. It's clear as day now, but back then, I didn't even know what it was. Adults at school, even after my diagnosis at 14, looked at me like I was making the pain up. They reluctantly sent others home from pain. They made jokes, even.
At 14, I got my PCOS diagnosis via ultrasound and blood test. It was an immediate result. 'Yep, you have it', verbatim. The nurse doing my ultrasound told me, a child, that I'll have trouble having kids. Which is all I've ever wanted, mind you. The next few years would carry on the same.
As I got older, it just got worse. By 16, I was missing school every week. By 18, I couldn't function and I was in hospital every week. I then got my second diagnosis letter, this time for Endometriosis.
'Although unlikely at her age, it's the only thing it could be', verbatim.
I have this letter still. I kept it to show people how ridiculous the healthcare system is.
My PCOS and Endometriosis are genetic. My mum almost died from it before I was born. She passed out in hospital after being turned away, and bled out. A cyst had ruptured. Yet, apparently, I was too young, as a new adult, to have Endometriosis? 'But that's all it could be'. Not a care in the world went into the diagnosis or letter. They didn't want me to do the surgery, and I didn't want to. I still don't and I probably will never get it done. I was then put on the pill. At first, I was hesitant. I was going on SSRI's at the same time for PTSD and OCD. My body became a medical cocktail overnight. But since then, now five years later, the pill was the best decision I ever made. I don't have periods anymore, so a good 95% of my symptoms don't appear. I am still chronically exhausted, all the time.
The PMOS label makes sense, despite me not having the weight gain symptom, due to the lack of energy people with PCOS have that I also have. It burdens me to this day. It makes it hard to have a job. I have never been able to work on site, I missed most of my university in person, and to do this day, most companies and brands don't understand the legal Disability Act in the UK, and how they must provide for folk like me.
Whilst it's been the worst thing in my life, it's made me stronger, braver, and educated. I have been able to use my social media platforms to spread awareness and connect people across the world.
I know my journey with these conditions has only just begun, despite it being 10 years this year. I'm not prepared in the slightest, but the awareness helps. I hope it helps others too.
-Mia
