MRI tomorrow : Hey everyone hope everyone... - Endometriosis UK

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MRI tomorrow

LolaLo3 profile image
9 Replies

Hey everyone hope everyone is all good ,

I have my first mri tomorrow this is a random question I have nail polish on my toes will I need to take it off for tomorrow ?

I’m having a abdomen and pelvic mri scan, anyone else had mri and how long did you have to wait for results?

I’ve been told to contact my specialist at my endo centre to let them know I’ve had my mri .. has anyone else had to do this? Xx

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LolaLo3 profile image
LolaLo3
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9 Replies
Flynn_Maverick profile image
Flynn_Maverick

Hi I’ve read before not to wear metallic nail varnish but I think normal stuff is okay... I had two MRIs last month both with very glittery nail varnish on my toes and no one said anything!

Are you NHS or private? I had a consultation the week after my MRIs and got the results then. Yes I did have to contact the surgeon’s secretary as he asked me to so he knew to look out for the results. Hope that helps :) x

LolaLo3 profile image
LolaLo3 in reply to Flynn_Maverick

Hi, aww that’s good I’ve not long had them done and the thought of soaking them off tonight is a tough task 😂 I’m nhs I had a meeting few weeks bk and they told me to contact them after I have mri, they did say I would be fastracked for the discussion meeting but that’s all I know Jus now.. I’m hoping I will hear how things go after mri or if I will get my appt through for my op I think the toughest part is the waiting game!

I read your recent post I also have endo in my diaphragm do U get breathless it’s either me being very unfit or the endo? I would mention to your anthesist that your worried about breathing when you wake up, I had a panic attack as soon as I woke from my general anaesthetic and I’m now panicking I will do the same when I get my next op , to be honest I was more mortified than anything , but When they woke me I sat up straight away so I will not be doing that again, I am going to make sure I say to my anthesist (spelling is rubbish ) wen I get my next op what I experienced before and what I’m worried about when I wake up.. what Stage is your endo if you don’t mind me asking ? Xx

Flynn_Maverick profile image
Flynn_Maverick in reply to LolaLo3

Hiya! No problem :) when you’ve got endo even the simple tasks are hard work 🙄 I can remember the first time I had surgery my back was so bad I hadn’t been able to shave my legs for ages and didn’t realise at the pre op they measured your legs for surgery stockings 🙈 the nurse was very kind and didn’t make any yeti references 🤣

Second op was NHS and I remember now that they sent the results to my gp and I was copied in, so actually you might get them faster than having to wait for your next consultation! Fingers crossed!

Yep I definitely get out of breath when the endo comes back on the diaphragm along with lots of other lovely symptoms - I’m normally fairly fit but even things like going up the stairs or picking stuff up off the floor (boyfriend’s clothes!!!!!) gets me slightly out of breath. Only slightly but it’s definitely noticeable!

Okay thanks, I will definitely talk to the anaesthetist as you suggest. It’s just pot luck with them - my first one was horrible but the second time she was lovely and I did tell her I was really worried about certain things and she was very good and reassuring. I also feel really sick after an anaesthetic and I’m having a much longer op this time so am worried about being sick!! I’ve got constant nausea that’s so bad I’m now pretty much phobic of being sick so I might mention that and ask them to pump me full of anti emetics before waking me up!!

Sorry to hear you had a panic attack - it must happen a lot post op so I’m sure they wouldn’t be thinking badly of you because of it. I don’t think having a panic attack is remotely embarrassing after you’ve been through a very stressful and traumatic experience! But fingers crossed it won’t happen again for you. I think you should definitely mention it to them - I said I was incredibly anxious about what happens after I wake up and got put on morphine last time. Marvellous stuff! Couldn’t have been happier! Did jazz hands at my parents and boyfriend as I got wheeled out of recovery haha!

Weirdly I have never been staged?! I had the same surgeon for the first two ops who never mentioned it but it was one of the first questions my new consultant asked so I think he will stage it once he’s had a look.

Do you mind me asking what your diaphragm symptoms are please? I get all the usual rib, shoulder and arm pain but I also have horrendous hiccups (I’m currently a joy to live with - when I’m not curled up trying not to be sick I’m hiccuping away like mad!) and also this weird sensation between the shoulder blades like I want to stretch them out but can’t. Just wondered if anyone else with diaphragmatic endo has those two!

Anyway thanks for your advice and good luck with the scans :) x

Flynn_Maverick profile image
Flynn_Maverick in reply to LolaLo3

Ooh also - my first MRI they were meant to be doing the pelvis and diaphragm but they saw a reference to endo and just did the pelvis as I think they just assumed. We then had to wait for hours for them to get a doctor to authorise them doing another scan to check the diaphragm. I would advise you keep saying the word DIAPHRAGM at them very loudly and make sure they’ve done it!! Also just to warn you, the MRI itself is fine (I’m claustrophobic and coped!) however when they are scanning the diaphragm you have to hold your breath quite a lot. Don’t panic it is doable but I did have a panic they had forgotten to tell me to breathe out!! Just so you’re prepared and don’t think they have forgotten you :)

SimplyDeeDee profile image
SimplyDeeDee in reply to Flynn_Maverick

I actually wished I was prepped about holding my breath, it’s all a very strange experience and not nice if you don’t like such small spaces.

I got given some headphone playing tranquil music which is lovely until it was interrupted by there directions to hold your breath.

Flynn_Maverick profile image
Flynn_Maverick in reply to SimplyDeeDee

Yes it came as a shock to me - I genuinely thought they had forgotten to tell me to breathe!! And have had MRIs before!! I always ask to be put in upside down so my head is nearest the entrance to the scanner. Wish I had had tranquil music - all I had was a picture of a slightly sinister cartoon monkey to stare at for 50 minutes!!!

LolaLo3 profile image
LolaLo3 in reply to Flynn_Maverick

Thanks you for your reply sorry it’s a late reply, ohh that’s interesting as my specialist told me I would have a abdominal and pelvic mri but my app letter jus says pelvic mri , so I will sure to tell them that I have it all over my abdomen , i didn’t know you could even get endo on diaphragm or liver or upper abdomen until my surgeon told me If was all over abdomen and told me exactly where it all is . It did make sense why I had pain upper abdominal aswell as lower abdominal I do get out of breath a lot and pain right across my two shoulders and just under my ribs it comes and goes every other day just like flare up days... it’s feel’s like I have winded myself..

I’ve heard they give headphones and can choose songs you like.. I don’t feel as nervous now so thanks!

My docs haven’t been that great because I’m seeing a endo specialist it’s like they don’t know what going on , I went last week for my review for my medication my doctor didn’t know I had the lap and didn’t know I was diagnosed until I told her and she them read my notes still didn’t ask how I was coping with it or how I was doing tbh I was hoping she was going to ask how I was coping with it a lot of people don’t understand endo sometimes it’s jus nice to be asked esp from your gp , I came out thinking guilty of having to take medication.. but if I don’t hear form my specialist by next couple weeks I will contact my gp.. and hope I’m not waiting for long ... good luck for your op! Let me know how you are getting on it’s good to hear about each other stores when we both have the same thing.. 😊 xx

Flynn_Maverick profile image
Flynn_Maverick in reply to LolaLo3

Hiya sorry I didn’t reply to you before your scan... how did it go? Did they check the diaphragm? I think that’s what my letter said too, just pelvis but was meant to be abdomen too! Not that anything has ever shown up for me on MRIs anyway, even when it’s there...

Yep those sound very familiar symptoms!! I can feel the diaphragm spasming when it’s not happy! And it feels like something’s trapped... a horrid pain! My liver and diaphragm got stuck together which was incredibly painful - I had to eat lying down 🙈

Sorry to hear you gp doesn’t know what’s going on - none of mine have ever known or cared when it comes to endo. They also don’t get that even if your symptoms clear up after a lap there’s a whole heap of psychological effects that endo has on you as well ... anyway you’re certainly not alone on that one and I’ll keep my fingers crossed that you hear soon.

Okay will do :) feel free to give me a prod and send me a message in a couple of weeks if my pain killer addled brain doesn’t remember to reply! Thanks for the good luck wishes! Keep me posted how you get on too :) x

LolaLo3 profile image
LolaLo3

Hi, mri went fine wasn’t as loud as I thought but I got headphones n got to choose the songs I wanted. I kept my eyes closed the whole time I opened them once s got a bit of a fright as i didn’t relise I was that close 🙈😂 I didn’t even think when they put the bed up to go in.. but it’s was all fine, thanks yeah when I went it I said to the nurse my app letter said it was a gynaecology pelvic mri and told the nurse my specialist Told me I was getting a abdominal and pelvic scan I also told her I have endo on the diaphragm and liver and next to glallbladder that was the reason I was to get both, she said yeah we will cover all of your abdomen and pelvic, so I’m assuming they got abdominal and pelvis, I called my specialist today but got there voicemail I did call A bit later than I was going to .. if I don’t hear bk next week I will call again,

I’m actually getting that feeling as soon as you mention I’ve been diagnosed with stage 4 endometriosis they don’t bother because have my own specialist it’s like they don’t bother about you... I jus keep my tablets on repeat so I don’t need to see any docs 🙈 hope your doing ok xx

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