Hope everyone is doing well. I was diagnosed with deep invasive endometriosis in 2023 last year and I had a MRI scan done which showed that I had deep endometriosis at two places that was affecting my bowel, bladder and uterine fold. The solution given to me was having a surgery to resolve this. The specialist mentioned there was a high risk with the surgery due to which I decided to get a second opinion of another consultant.
I recently went to another endometriosis specialist and he did transvaginal ultrasound and he mentioned that my previous MRI scan is exaggerated and that my endometriosis is not as deep. I am really confused with two different diagnosis and I wanted to know if someone has had this issue before? I would also want to know between MRI and transvaginal ultrasound, which one is more accurate and reliable? Thanks.
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Fabha
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Hi, first of all I’m sorry you are also suffering from this horrible disease! Long story short. I had my laparoscopy in 2021, which found adenomyosis, fibroids & severe stage 4 endo on womb, uterus, ovaries, diaphragm & dotted all along my small & large bowel. Chocolate cysts, cysts & possibly fibroids showed up on ultrasound & internal scan. However, they said there was no point in having a MRI, as the only way to see endo itself is with the naked eye only. A number of specialists repeated this, & did not know what they were facing until my surgery.
Thank you so much for your reply! I completely get that the scan/ultrasound won’t tell the whole story but I was hoping they both would have similar diagnosis. As you said, I guess I won’t know the whole picture until I go for the surgery. Thanks xx
That is my main worry! I don’t want to say yes to surgery not knowing how bad it is and you can’t even do anything once you are in surgery because you would be under anaesthesia!
Mine is similar... ultrasound (in 2021) gave lots of question marks as its harder to get accurate measurements, see how it's affecting bowel and what the difficulties colours or echos actually are, - MRI (in 2022) showed deep invasive endo affecting bowel, large choc cysts, ovaries stuck in pod etc. One specialist said i need a section of bowel cut out as its muscle invasive and the other said its not in the muscle so need a rectal shave. On wait list for surgery (hopefully this year but been waiting 2 years already so not sure) for the rectal shave then if once they are in it is worse they will do what they need to do. Hope that helps!
I think the difficulty is as people have said there are problems with both scanning techniques and really the only way to definitively diagnose is with surgery which I agree is terrifying as you’ve then got to commit to an unknown level of risk. I have heard of people having diagnostic surgeries where they don’t do any excising of the cells, just see what’s going on, so maybe that’s an option privately.
It’s really frustrating when the consultants talk about it so definitively when they can’t know, I had one look at an ultrasound, examine me and then say I had stage 4 bla bla all the risks bowel bladder, then went to another and he wasn’t anywhere near as concerned, and gave me a medication called deinogest which I’ve been on ever since.
Regarding the accuracy of MRI and ultrasound I believe MRI is thought to be more accurate but I think they both have their uses ncbi.nlm.nih.gov/pmc/articl....
The other thing I recently found out is that some endo centres have radiologists trained to detect endo and others don’t. So it may be worth checking on this website if the centres you went to have one listed, as I have assumed (might be wrong) that otherwise the radiologist may have just been general and so it might be that that would impact the validity of your scan bsge.org.uk/centre/category...
The radiologist interpreting the MRI is very important. I think the j on nlyvway yiu’d be certain is by going to kaparoscopy. Are your symptoms bad enough to warrant this?
Hi, yes I have really bad endometriosis symptoms so both specialists have recommended laparoscopy .I will definitely need to check if the MRI was interpreted by a radiologist. Thanks for your response! x
The thing is the second doctor would not have seen the actual MRI images, so how does he know it’s exaggerated? Is he just comparing what he saw in ultrasound and perhaps it didn’t look as bad on the ultrasound, because it’s very plausible that things looked different on the MRI vs the ultrasound
My understanding is that MRIs are a far better diagnostic tool than ultrasounds for deep endo specifically. But as others have said you do need someone reading the scan who has specific experience reading endo on an MRI.
Anecdotally - for me, I had lots of pain but multiple clear ultrasounds on the NHS over literally 20 years (both external and transvaginal). It took going private and a single MRI to identify that I had deep endometriosis on the bowel and uterus (tethering the two) and on the uterosacral ligaments on both sides. I had excision surgery one week ago and while it's too soon to say if it's helped my (absolutely crippling) period pain, they found endo mostly where the MRI said it was (on the bowel and uterus and ligaments, but also some bonus small bits on the ureters on both sides).
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