Meg's Endometriosis Journey - Struggles Getting a Diagnosis, Starting an Endo Instagram and Advice for Getting Diagnosed

Meg's Endometriosis Journey - Struggles Getting a Diagnosis, Starting an Endo Instagram and Advice for Getting Diagnosed

Please can you tell us about your Endometriosis journey?

I actually starting having problems at 15, I used to come home from school because periods hurt so bad I couldn't concentrate, I was so heavy I'd bleed through, so I wanted to be near a bathroom. I had multiple ultrasounds that showed nothing - I mean, like 10! I would lay on the bathroom floor at 3am crying because I felt so sick from it. Then when I was 24, I had excruciating pain on my right hand side. They kept me in hospital as I was vomiting so they thought it was appendicitis. After a scan they said it was a ruptured cyst because of fluid and that I should speak to Gynaecology if I was having problems.

I saw an awful doctor who told me I should lose weight, that would solve the problems - I was a size 10. I came home and sobbed to my mum who made me book a second appointment at the GP. She came with me and said that I was suffering, that GP then referred me to a Gynaecologist. The Gynae I saw listened, and after a Laparoscopy, I was diagnosed at 25 years old!

I think it took so long because doctors either thought I was exaggerating or they didn't want to investigate further. I did also suffer with UTIs so they often palmed me off with antibiotics and just hoped for the best!

What have you found most difficult when it comes to your journey with Endometriosis?

💛 How long it took to get a diagnosis - it took me 10 years! So when I finally got it I cried happy tears that I wasn't going mental (which actually is a bit insane if you ask me!) Who is happy to be told they have something wrong?!

 💛 Being medically gaslit. Ultrasounds were always clear and they would say maybe it's your weight or a favourite "periods are supposed to hurt a bit" "we don't know why you're in this much pain" which fed into that feeling like it was in my head when it wasn't.

 💛 How it affects relationships and friendships. I don't want to be intimate if I'm dying with pain, I can't help around the house on bad days, I might cancel important plans and just curl up. -  I hate being seen as weak or lazy when I'm in agony!


What inspired you to start your Endo Instagram?

I originally wanted to have a space to rant about Endometriosis. I now want people to see the affects it has on others and raise awareness that it's not just a bad period, I was just upset that people don't see how debilitating it is because one day I'm smiling and one day I'm in agony.


What's one piece of advice you'd give to someone suspecting they have Endo and trying to get diagnosed?

My advice would be to not give up with doctors, you are the only person living inside your body and you can tell when something is wrong. Advocate for your own health because no one else will!

- Meg (@endomydreams on Instagram)

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