I have no officially diagnosis, I am (NHS background) and self diagnosing. Since the age of 16 I have been on the pill due to uncontrollable pain, bleeding through clothing, missing school days because of the embarrassment and pain. Over the last 2 years I have experienced right sided pelvic pain, it’s always sudden in character and will leave me on the bathroom floor in sweats, usually starts and worsens on movement. I saw a GP who advised me to take Paracetamol the first incident and referred me to gynaecology who later refused to see me. The last I was advised to take myself to A&E. 8 hours of being in hospital I got referred to surgeons to be told it wasn’t an appendix (I knew this) and again was refused by gynaecology. I did eventually get a scan and was told there were cysts on my ovaries but nothing to cause concern. I was advised by surgeons that if the pain came back to return to A&E.. which I’m not doing - it’s not an emergency but isn’t being dealt with by GP.
What’s your experiences/advice?! Like I said above I am self diagnosing but what are you meant to do when you get no GP support?!
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Lauren66
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I know what you’re going through, it’s important to write it all down. For contacting your GP I have found the econsult better as it’s all there in writing that can’t be ignored. Try and stick with one GP, that was my mistake. I don’t understand why gynae would refuse to see you, that’s ridiculous.
In 2019 after a year of hell back and forth to GP, I saw a gynae privately with no referral (they go wrong far too often) after handing him history/symptoms and some questions he diagnosed endo.
I’d had an ultrasound prior to that which showed three fibroids, I’d had it done for bladder rather than gynae. Everyone thought too small, but it turned out there were far more and in awkward places.
I went to A&E a couple of weeks back, it was ok.
Can you go to another hospital?
I’ve asked GP for a referral elsewhere now to a different endo team. You have to push, keep going, you will get it sorted 🙂
Kinda feel like I could of written this myself. Although I’ve now finally been able to see a gynaecologist in the last year.
My pain is always in my right side and I’ve constantly ended up in hospital for my appendix every single time. But every time they scan me and it shows cysts on my ovaries, only this latest time it showed my tube was blocked aswell.
Keep at your GP or better still try see a new one, i went through countless GPs in my surgery before I finally found one who listened, what’s the hardest is getting Gynaecology to accept a referral, it took me 5 years to get Gynaecology to accept my referral and it’s taken me the same amount for my GP to realise I can’t just use paracetamol to deal with the pain.
I know it’s a hard long process, this is part of the reason why it takes 7-8 years to get an official diagnosis of Endometriosis as the only way to diagnose it is through a Laposcropy procedure.
You just have to keep at it the best you can, don’t let your GP get away with thinking they don’t have to deal with it; because they do and it isn’t nice been left in pain. I hope you manage to get somewhere soon Xx
My advice is to not take no for an answer. Change GP and get them to push for a gynaecologist. Depending on how severe the pain is, it can be debilitating, so it needs to get sorted quickly. I’m really sorry you’ve had this experience, I hope it gets better soon x
Like lots of the replies, I feel your post and your symptoms very relatable too. If you click on my picture, read my profile, it might help you a bit. Buy books on endo, read a lot about the condition, because knowledge is powerful. You’re going to realise that getting diagnosed with endo is a battle and we warriors have to shout loud and push hard to be heard. Good luck.
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