Clear MRI - could I still have endo? - Endometriosis UK

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Clear MRI - could I still have endo?

Dartmouth93 profile image
11 Replies

Hi ladies. Had a follow up with my endo specialist today who said my MRI was normal - but fortunately he’s still put me on his surgery list to make sure as he said superficial endo won’t show on and MRI only DIE…was just wondering if anyone else has experienced normal MRI results and then had endo found during their laparoscopy? Just want to have some answers finally! Also on another note I had my routine smear test yesterday and it was agony when she was tightening the speculum especially. Anyone else experience this? 😭

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Dartmouth93
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11 Replies
CryBaby91 profile image
CryBaby91

100% you can have clear scans and then boom find endo in the op! So please don't worry too much, there's no way they would recommend a lap if they didn't think it was a possibility. Sending huge hugs xxx

Dartmouth93 profile image
Dartmouth93 in reply to CryBaby91

Thanks so much lovely I feel so much better after everyone’s advice ❤️ Xxx

I had clear ultrasound and MRI results, then they found endometriosis in the laparoscopy and hysteroscopy. They only found a little endo, yet I had excruciating pain. My consultant explained that it can all play havoc with your nerves and that mine had clearly been affected. Alternately, my sister had far more extensive endo and very little pain 🤷🏻‍♀️

The procedure really isn’t that bad and you should get some solid answers.

In regards to the speculum, I experienced severe pains and couldn’t use tampons without severe discomfort. It’s really really horrible.

One thing this site/app has taught me is that we are not alone in our struggles - and I’ve found that really helps x

Dartmouth93 profile image
Dartmouth93 in reply to PenelopeClearwater

That’s reassured me a lot thanks lovely, I feel a lot more hopeful that I’ll get answers this time round ❤️ And I also find tampons really uncomfortable too 😞 defo helps knowing I’m not alone thank you xx

Hunter-23 profile image
Hunter-23

Normal MRI, superficial (as far as I'm aware) Endo found at diagnostic laparoscopy

EndoJaz profile image
EndoJaz

Yes had many normal scans and then found in lap. Hope you don’t have to wait long for it. X

e-sian7 profile image
e-sian7

Hey I had an MRI and it was normal, then in my laparoscopy they found I have stage 3 endo so it definitely misses it - good luck xx

Larajanejohnston profile image
Larajanejohnston

All of my scans were clear and I have stage 4 endo! It was on my bowels, uterus, ureters and peritoneal cavity, so 100% go through with the laproscopy. I was in the same boat as you and nearly cancelled it, but its been 7 months on and I can't tell you how much my life has changed xxx

Dartmouth93 profile image
Dartmouth93 in reply to Larajanejohnston

That’s given me so much hope that it’s not all in my head thank you so much, can’t believe how severe yours was and it showed nothing at all! I’m so glad you’ve noticed such a difference since you op xxx

Hayayaya profile image
Hayayaya

Hi,

You’re in exact the same boat as me. I’ve had ultrasounds and an MRI. They found nothing in either but I’m still on the list for a lap. Been waiting since March and they’ve told me that my op should be sometime in 2022 😣

KezMurr profile image
KezMurr

Bit late to this one but YES. I had completely clear MRI and trans vaginal ultrasound sound. I was told that I couldn't have endo. I had to fight to get a laparoscopy which took 3 years from the point of the scans. The pain remained the same. The laparoscopy showed that I had stage 4 endometriosis. Multiple organs had fused together involving my bowel, ovaries and uterus. It is incredibly frustrating and beyond ridiculous that medical professionals keep to the script of either saying 'there's nothing there' or 'it must be superficial since it's not showing up on scans'. Biggest load of poop. If we have figured this out, how have they not.

Hope your situation has improved xx

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