My Endometriosis Story - My Symptoms, Getting Diagnosed and Life So Far

My Endometriosis Story - My Symptoms, Getting Diagnosed and Life So Far

Growing up my periods were excruciating, I remember struggling so much at school. The pain was so bad that the room would start to spin and I’d feel nauseous. So many times I remember the school calling my mum to pick me up and I’d throw up on the drive home. I’d spend the rest of the day in bed just willing myself to sleep so I didn't have to deal with the pain anymore.

This continued to be a problem well into my years at college, but I was now also getting dizziness and visual blackouts when I stood up. It turns out that my periods were so heavy that I was now anaemic. After a visit to the GP I was put onto Depo-Provera (the contraceptive injection) to stop my periods completely. This masked my symptoms for a while until I switched contraceptives due to Depo making me an emotional wreck. My symptoms began to creep back in, but this time they were all of the time, not just on my periods. I started to struggle to attend my university lectures and missed out on socialising with friends. I remembered how awful my periods had been in my teens and decided that I needed to see my GP - this couldn't be normal. After visits to two different GP’s and a nurse, they all told me that “some women just have more painful periods” and “thats just how it is”. I was so angry and heartbroken that I was repeatedly being told I was wrong, it felt like they were calling me a liar straight to my face. I sat in my car after each appointment and cried on the phone to my mum.

Fuelled by anger and determined to make someone believe that there was something wrong with me, I booked another GP appointment, this time armed with a symptom tracker and the name of a specialist. I was prepared to barge straight in there and demand she listen and refer me to the specialist I wanted to see, but to my very genuine surprise at this point, she asked me “do you think this might be endometriosis?”. I honestly could've cried, to finally have someone see what I was seeing felt like an actual miracle. She told me that she was going to get me booked in for some ultrasounds, just to rule out anything else, and told me that they’d likely not show any Endo but that this didn't mean there wasn't any there.

I left that appointment filled with so much joy and major relief. I finally felt like I was getting somewhere and wasn't going insane. I got my referral to the Endo specialist and had my first laparoscopic surgery in 2019. After my surgery, the specialist told me that they did find endometriosis and had the anaesthetic not still been strongly in my system I think I’d have cried at the relief I felt. I felt like I now knew what I was tackling and was just so happy to finally have an answer!

A few years had passed and I had another laparoscopic surgery at the end of 2023. The daily pain and fatigue had reared its ugly head once again and had gotten to the point that I felt like I wasn't even living anymore. For most of 2023, I was battling constant fatigue and ridiculous pain, so bad that I couldn't walk my dog, do my own shopping or head out to catch up with friends. This affected my mental health so badly and I knew it was time for another surgery.

I'm now 4 months post-op and I’m feeling good! I still have to manage my days, I know that if i have a really busy day then I’m going to have to spend the next few days recovering. It can be really frustrating, and some days I still feel the resentment that this is how I’m having to live my life. But I’m determined to figure out how to best manage my endo, and live a slower, less stressful life.

My journey with Endometriosis has not been the smoothest ride so far, but I’m grateful to have community and loving friends and family to support me along the way.

 

If any of the above is relatable to you, and you suspect you might have Endometriosis, be sure to contact your GP. Taking a symptom tracker with you can help massively! Here’s a free PDF tracker for you to use. You’re not in this alone!

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