I jumped in the shower feeling perfectly normal, and then trudged back into my bedroom resenting another early start. And then it hit me… An indescribable pain… A pain like no other I had ever experienced before.
I barely managed a meek but loud “mum!” before I collapsed to the floor.
Mum helped me back into bed and we assumed (hoped) it would pass. I’d started my period a few years earlier, the pain would usually rear its ugly head a day or so before I was due, it was painful but never this bad. It felt like someone was trying to rake out my insides with a thousand knives, whilst setting them on fire and punching me, hard, for extra measure.
After a few hours of being crumpled into the foetal position, it was clear the pain wasn’t going away on its own… It was time to go to the hospital.
My mind goes a bit patchy here. I’m not sure if I was in and out of consciousness, or if all I could focus on was the pain, but next thing I remember is being taken into surgery. The doctors believed my appendix was rupturing and needed to be dealt with immediately.
Once responsive after surgery, I was told they had discovered a 10cm cyst. 10cm! That’s the size of a small grapefruit, so think of that next time you’re tucking into your breakfast (or maybe don’t!) This monster cyst was fused firmly around my right ovary and had swallowed my appendix.
Luckily the surgeons managed to save my ovary!
(TW: the next sentence describes part of the surgery and does get a bit grim so skip to the next paragraph if you don’t want to read) However in order to save the ovary they had to puncture the cyst. This left me with a tube fixed below my belly button draining this excess fluid out of me.
The extent of the surgery meant I couldn't walk for about 5 days; I had to be woken up several times every night for medication and the anaesthetic made me nauseous, which caused a loss of appetite. This was honestly really tough for 17 year old me to go through, but after a gruelling week on the ward, I was released to recover at home.
…
About two weeks after my surgery I'm back at the hospital for a check-up. This is where I'm first presented with the word that would sometimes keep me up at night with worry over the next decade: Endometriosis.
That's what the 10cm cyst was diagnosed as - endometriosis. I had never heard the word before this consultation, I could barely pronounce it and I had no idea what it was. But neither did the doctor. I was just handed a print out from the NHS website and sent on my way. And until about 10 years later, that non-existent conversation and sheet of A4 was the most extensive information I was told from a medical professional.
I was just left to get on with it.
Now, shockingly, I am considered pretty lucky when it comes to my diagnosis as it was quick. On average it takes 8 years to be diagnosed. But even with an official diagnosis, I am also often dismissed by doctors.
Endometriosis is not just a bad period, it's a life changing condition that affects so many parts of your body.
I'm hoping that by sharing my story and talking openly about my experiences, that together we can raise awareness about this horrendous condition. Ultimately the diagnosis time needs to be drastically reduced and the level of care and treatment options must be increased. But that obviously takes time, so hopefully we can start today by opening a dialogue and being there for one another.
So… If you have any questions or just want to chat my inbox is victoriawellsjewellery@gmail.com or send me a DM @victoriawjewel
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