Would endo have been picked up on an MRI?

[Kitty-102]

Hi,

I’m convinced I have endo (I have all the symptoms!) but have never been tested for it.

I had a bowel MRI (as part of my Coeliacs check up) a year or so ago and wondered whether endo would have been picked up on that? I know ultrasounds aren’t very conclusive but not sure about MRIs? Does the fact nothing was picked up mean I definitely don’t have endo or does it not rule it out?

Thanks

[Lovisa]

MRI may pick up deep endometriosis, are you under the care of a gyne or just the GP.

[Kitty-102 in reply to Lovisa]

Just the Gp, although they’ve referred me for an ultrasound and will then decide whether or not to refer me to gynae. They weren’t looking for endo when they did the MRI but I’m just wondering whether they would have picked it up if I had it?

[Lovisa in reply to Kitty-102]

Ahh, then they may not see anything. You need a laparoscopy for an actual diagnoses of endo.

[Kitty-102 in reply to Lovisa]

Ok, thank you. I’ll push a laparoscopy then. Thank you!

[RicEndoUK]

Hi Kitty-102,

The only definitive way to diagnose endometriosis is by a laparoscopy. This is an operation in which a camera (a laparoscope) is inserted into the pelvis via a small cut near the navel.

Scans (including MRIs), blood tests and internal examinations are not a conclusive way to diagnose endometriosis and a normal scan, blood test and internal examination does not mean that you do not have endometriosis.

You may find the following information sheets helpful:

endometriosis-uk.org/sites/...

endometriosis-uk.org/sites/...

RicEndoUk

Volunteer Moderator

[Kitty-102 in reply to RicEndoUK]

Hi, thank you! That’s really helpful to know! Thanks

[Hidden]

I was told by my GP that neither CT or ultrasound are effective methods of identifying endo.

[Kitty-102 in reply to Hidden]

Thank you, that’s helpful to know

[Tillyfloss]

hi. As already said a lap is really needed but the surgeon really has to be experienced in endometriosis, my mild Endo after emergency surgery turned out to be far worse and that was with a normal ct and MRI scan they thought all they had to do was cysts and id be done in 2hours, I was in for 6 hours by which point they had to stop.

what are your main symptoms? Xx

[Kitty-102 in reply to Tillyfloss]

Thanks tillyfloss that’s helpful to know. My gp (who is pretty useless!) seemed to suggest that if the ultrasound was negative then they would have to be pretty sure that endo could be a possibility before he would refer me to gynae. I know ultrasounds aren’t conclusive but didn’t know if my MRI would make him decide not to refer me.

I have intense lower abdo pain that so bad it makes me pass out, bloating, diarrhoea, nausea and vomiting, heavy/irregular periods with clotting, painful sex (so much so that’s it impossible), headaches, extreme fatigue, hip/pelvis/tailbone aches, vitamin deficiencies.....

I was diagnosed with coeliacs in 2014 and I hoped that was going to fix all my symptoms but, other than improving the daily diarrhoea, it hasn’t really improved the other symptoms.

[el_ex]

Not necessarily - I had ultrasounds and MRIs and all they could pick up was 'excess fluid on the pelvis'. They wanted to just put me on some antibiotics! The cheek! I then paid to go private for my lap and they found the endo. My surgeon removed all that he could safely. Keep fighting x

[Kitty-102 in reply to el_ex]

Thank you! Good to know!

[foursimplewords]

sorry to change the subject but are you newly diagnosed as a coeliac? I have been coeliac since i was 13 months old and have never had a bowel MRI

[Kitty-102 in reply to foursimplewords]

Hi

I’ve had coeliac symptoms for 20years before I was diagnosed. I think my MRI was about a year or so after my diagnosis and as far as I am aware, they are not done routinely for coeliacs. I think mine was done because of my ongoing symptoms and unexplained vitamin deficiencies/neutropenia.

[KelseyJade]

I am under a specialist endometriosis consultant and had a laparoscopy with a normal gynae before being referred. Unfortunately the extent of endometriosis was not fully reported on so specialist did an internal ultrasound and then a MRI to get a full report. However to be able to see what was what I needed an enima and gel inserted in the vagina. I would say it's unlikely they would see endo on a normal MRI especially if that is not what they are looking for. They won't report on other things.

Sorry not the answer you wanted I'm sure.

[Kitty-102 in reply to KelseyJade]

Hi Kelsey

It actually is! The GP was reluctant to refer me to gynae but has agreed to send me for an ultrasound and said he’ll reconsider once he gets the results. My concern was that, if nothing shows on the ultrasound (which I understand is pretty likely!) then that, coupled with an MRI that didn’t show anything, he may decide not to refer me. At least now I now that negative ultrasounds and MRIs don’t rule it out and aren’t a reason not to refer me. I feel like he’s really reluctant to refer me and I have to push him at every stage!!

Thanks for your help