is it too confusing??: hey, ok so this ones... - Endometriosis UK

Endometriosis UK

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is it too confusing??

Elismummy90 profile image
10 Replies

hey, ok so this ones a good one……. I've had endo for yearssss and had surgery twice but i now feel its back and this time worse than ever….. but you see im undergoing MRI’s right now for the severe back pains i get but turns out its a bone spur in my neck and narrowing of a nerve, with all this going on plus an umbilical hernia and a hiatal hernia well i dont want to confuse the doctors even more by adding all my endo stuff to the mix, what do i do?? My heads all over the place!!

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Elismummy90 profile image
Elismummy90
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10 Replies
Simo7 profile image
Simo7

Sorry you’re going through so much. I would get a referral to a specialist if you’re endo is back and worse. It’s not going to go away is it, so better an early referral than leaving it until you’re in worse chronic pain. Wish you well x

Elismummy90 profile image
Elismummy90 in reply to Simo7

its never ending but you're right, i need to just get it done. Thanks :) x

Marcia71 profile image
Marcia71

I’d ask if your mri can be seen by someone skilled at spotting endo on MRIs. It is a specialised area and bsge centres should have someone trained in imaging. And I agree that as others have said ask to be referred to endo specialist now as some of your pain maybe due to endo too - for example back pain can come from endo on uterosacral ligaments and only endo specialists are going to know that.

Elismummy90 profile image
Elismummy90 in reply to Marcia71

the MRI was only taking images of around my neck and top of my spine so id need to have an MRI arranged for my pelvis. My GP has been really shocking with me because the problems im having has been a nightmare to diagnose, I've been sent from department to department and pestered them none stop for answers, i didn't want to go back to them but i have no choice now. Thank you.

Marcia71 profile image
Marcia71 in reply to Elismummy90

sorry to hear that. I thought you might get away with just someone else looking at. Do you have a Gynae you can go to directly to ask? Maybe tell gp you just want to keep on top of all issues to ensure you are getting the best care for you but also that you’re trying to make efficient use of the wonderful resources available to you 🥰

Elismummy90 profile image
Elismummy90 in reply to Marcia71

ill need a referral as i haven't been for like 4 years i think. I dont think i can be so nice 😂 maybe ill word it a little differently lol going to ask for a referral tomorrow :)

Marcia71 profile image
Marcia71

You will need that new referral.

I’m sure you will find a way to word it but it’s often a matter of flattery or if you’re really brave telling them how you know the treatment pathway better than they do 🤣🤣. Good luck with it all it really does sound like you’ve more to deal with than most xx

Elismummy90 profile image
Elismummy90

yeah i thought so :( what a mess! Hahaha im not that brave! Doctors put me on edge lol. Thanks 😘 you get used to it all after a while lol but thats whats taught me to push and pester them or you literally dont get anywhere xx

Bubblepoppy profile image
Bubblepoppy

Im the same with my dr he's a pain on its own haha he was really good until I got endometriosis years ago now he seems to dismiss everything I say, all I say is I need to be referred to the specialist again or I email the endo specialist nurse now and tell him what she's said I think he hates the fact I can email them directly now im under the endo team he's still a good dr don't get me wrong I just think he's not good with endometriosis im just waiting on another scan now 🙄 I hope you get sorted out soon xx

Elismummy90 profile image
Elismummy90 in reply to Bubblepoppy

alot of people dismiss it because they know nothing about it, my old boss and team leader were exactly same. Its so frustrating because i just wanted to punch them both when they laughed like, just cos you've never heard of it consider yourself bloody lucky and show some respect ffs. Men especially have no idea about it so its worse sometimes talking to them about it. I wish i could talk directly to them, i called the doctors for a referral but she said i need an examination first with it being a few years since i had it, but im in thursday so its a step forward. Thanks hun and good luck with your scan xx

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