Adenomyosis conflicting results help?

[En89]

So in December 2023 I was diagnosed with adenomyosis via transvaginal ultrasound with a proper gynecologist..

I recently had a mri and now this consultant has told me he can't see adenomyosis except a really thick lining?

I am so confussed what am I ment to think?

I asked him will he now remove the adenomyosis diagnosis off my notes and he said but what would be the point? It's all very conflicting Im so confussed

[LJC1416]

Hey!

Just wanted to reply and say last month I had this exact same result!

Internal ultrasound showed what they thought was adenomyosis, a week later I have an MRI and it comes back all clear… they seem to be taking the MRI results as the right one though and ignoring the ultrasound.

No one seems to be giving me any answers. Surely it would show up on an MRI if it was there 🤷‍♀️

Hopefully someone on here can hop in with some helpful advice but just wanted to say you’re not alone! These tests are meant to help us but in my opinion they hinder! X

[KirbyStar]

Hello,

I’m sorry you’ve been given such conflicting information, the confusion and lack of clear information is so frustrating when dealing with endo and adeno! I have adeno and it didn’t show up on either my transvaginal ultrasound or MRI, in most cases it can only be seen via the laparoscopy, so I’d say you have it if it was seen in your ultrasound. It might also be the case that if a consultant more experienced in endo/adeno looked at your MRI they would also say you have adeno based on that too

[Potts22]

I would ask to get a second opinion from a different doctor.

[asread]

check who did your MRI report - was it a specialist radiologist at the hospital you are at with the Gyne team and possibly multi disciplinary such as gastro and urology - my MRI report in Jan was totally wrong. It said deep endo but it was reviewed in Gyne and told adenoymiosis. The MRI scan system in my nhs is to have the scan and they are outscored to a company in India and the radiologist is not specialist Gyne.

[Lindle]

It all depends on the protocol used for MRI and the expertise of the technician doing it. If it wasn’t stated to look for adeno then the appropriate protocol might not have been used.

Both ultrasound and MRI are around the same for accuracy so it may be that you just have mild adeno and the sonographer was more experienced in looking for it. Either way the MRI can’t rule it out so you will have ‘suspected’ adeno.

[Gunge_Ho]

I am new to this and just feeling like there's not that much information available about this condition. So thanks for sharing your experiences on here.

I wonder how important the time in cycle is for the diagnostic tests? Presumably this is a condition which is more visible during menstruation?

Has anybody has scans during menstruation to compare with scans at other times?

Obviously our health service is not geared up to providing tests at specific times- so many people struggle to get their dating scan booked in at the right time during pregnancy.

It seems to me that for a condition which affects approximately 1/6 of the population it's appalling that investigation is contradictory and unhelpful because it's too difficult to apply a timeframe on scans.

[Kimple123]

hi. I was diagnosed with adenomyosis around 2022 after suffering from such pain down below for 3 years. Gp was terrible. Referred me spinal and after surgeon saw me ( no examination at all) he sent me to have a steroid injection in coccyx! 6 months later pain was back. Went to Colon rectal and it was that consultant that said I should see Gynae. Within 10 mins of internal ultrasound I was told suspected adenomyosis! Long story short….I was told the only way to get 100% diagnosis of this condition is to have womb removed and then examine it! So ultrasound etc is the best they can do. It’s very common and doesn’t always cause issues. For me I had a retained placenta after birth and an op so it’s not surprising I have an enlarged dodgy womb!

I hope that helps.