Feel like it is all in my head: I have... - Endometriosis UK

Endometriosis UK

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Feel like it is all in my head

bex89 profile image
5 Replies

I have gotten back my mri results which have come back sayin "no conclusive signs of endo" which i think means theres nowt there. But they have found a disc bulge in my lower spine, not what they went looking for but thanks for something to add to the list!! The longer this goes on the more I feel like it is all in my head. I know that I have been better since being on the mini pill in that I only have issues with bm, pain in certain sexual positions and lower back pain occasionally (which there now putting down to the disc) but i feel like it is all in my head now that they have come back with this?!? Kind of getting to the point that I give up. Pills working, i can take dulcolax and stay ontop during sex, just give me a diagnosis and stop prodding or let me get on just dont make me feel like its in my head.

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bex89
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5 Replies
moomoo8 profile image
moomoo8

Hi bex89! :)

The only way to definitely diagnose Endo is a Laparscopy.

I'm going to say this on all my posts..... lol!! As I feel strongly about it and wish I had done it myself more.....But trust yourself you know your own body best, don't doubt what you know and feel. That is the most important piece of advice I would give everyone on here!

I had a Lower Spine & Pelvis MRI in March last year and it didn't show any Endo which sent me into a bad spiral of questioning / doubting myself etc.....Anyway I had a Lap in December and I have Stage 4 extensive Endo none of which showed on the MRI not even a patch I have on my groin which is about 20x bigger than all the other ones! Both myself and friends / family where shocked as you just naturally assume that an MRI shows everything!!

Go back to your GP and ask to be referred to a Gynae at one of the BSGE Accredited NHS Endo Centres if there is one by you or if not demand a Lap.

bsge.org.uk/ec-BSGE-accredi...

Take Care xxxx

katie26 profile image
katie26

MRI can not diagnose endo. I was diagnosed with endo after a diagnostic lap in 2013 had an MRI in jan this year simply to see if the endo had penetrated the vowel before I had my surgery in march. and the results where. Polycistic ovaries my consultant laughed when he read it.

Don't give up you know your body. You will get your answers if you are suffering in your day to day laugh due to pain it's not right don't stop bothering. Your gp until you have the answers you deserve xxx

SallyBowles profile image
SallyBowles

Echoing what the others have said here. A laparoscopy is the ONLY way you can get a definite diagnosis. On ultrasound or MRI you can see other things such as chocolate cysts or whether your organs are being pulled around due to adhesions but endo lesions do not show up. I had already had a diagnosis of endo and had an MRI before a planned Hysterectomy, but even my endo specialist was unable to remove my uterus as it was so badly fused to my bowel and all the front of my bladder etc was stuck to the front of my abdomen. This didn't show up on the MRI. Push for a referral for a diagnostic lap.

bex89 profile image
bex89

Thank you for the replies. They have put my mind at rest a little. I was under the impression that the pain was caused by the adhesions and if the mri showed none of then the endo wouldnt cause the issues im having. Its all very confusing i have decided! X

dabba76 profile image
dabba76 in reply to bex89

Hi Bex totally agree with the ladies above after extensively searching on line about MRI. I hoped that I could have an MRI instead of a lap which would be my 2nd but it seems it's not the case. I too continually question myself and think what if its all in my head. I am starting counselling sessions as I feel like I am going mad sometimes and try not to burden my family/friends as I am sick of me moaning/crying/being depressed/angry so god knows how they feel.

Keep fighting x

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