Confused by Conflicting scans

[Starry]

Very confused..

Gp suspected fibroid and enlarged uterus

Ultrasound one and gynae 1 said adenomyosis plus slightly enlarged uterus and deep Endo but no fibroid

Ultrasound 2 reported fibroid somewhere else nothing else.

Gynae then 2 warns of significant Endo, no mention of adenomyosis and states normal uterus (meanwhile pain worse)

MRI results in and letter now out of blue mentions small endometriomas in both my ovaries but nothing else.... no one has talked about Endo in ovaries till now.

Why is each scan result conflicting with each other?

Dont get me wrong, It sounds promising that not more was found. And the deep rectal thing seems not to have been raised by anyone but first bloke.

Maybe I can just have one op with treatment not two now. But it's confusing to get somany mixed messages. Why do the scans not agree. ? My symptoms come and go but surely the cause is there all the time?

[Marcia71]

Because unfortunately scans aren't great at seeing what's going on with endo a laparoscopy is the best way to see exactly what's going on and where. And hopefully treat as necessary whilst in there! Hopefully that will be next step for you. Good luck

[Hope264]

Hi , it is likely you could have all of these things. It sounds hard when you don't know what might be causing various symptoms, but it can all also be interacting together. I have stage 3 endometriosis that was deep infiltrating in utero sacral ligaments. More recently likely adenomyosis that has not been confirmed but was diagnosed based on my symptoms. I have also had several smaller fibroids, which did not effect anything as I understand it. None of it has ever shown up in an ultrasound scan. But I have been lucky with doctors and specislists that listened and have communicated clearly. This takes time and longer appointments. I have also let a few go along the way that didnt.

The way I understand it is that fibroids are often just monitored as they are common, also that adenomysis needs to be confirmed with a biopsy. In terms of surgical treatment I understand the choices may be much more limited with adeno. So it is likely they might focus on the endo for surgical stuff to start with, apart from a biopsy? I am no expert but this is based on my experiences. It is good that one of your doctors is recognising that you probably have significant endo that needs to be treated.

Do you have access to get refferal the specialist centres in UK? These sound like a good service. I don't live there but read about these centres on here. Best of luck

[Starry in reply to Hope264]

Thanks Maryanne. X Yes the 2nd consultant was in a UK specialist centre, that's why I swapped. When do you get told what stage it is.?

[Hope264]

Hi Starry,

I am in Australia it sounds like you have some really good free services in UK. I am glad you have found a specialist centre to access too. I never really got told the stage and my gynae and doc just call it 'severe endometriosis'. Maybe you can post and ask the UK ladies? I have read around the condition on this forum especially and seen the pics from my surgery, so have sort of worked it out. I am sure I could still learn more about the stages too.

It does sound like you have rather alot if it is showing up in scans in different places. I hope you can get some surgical help soon. I did feel much better for a while when it was removed years ago. I am still trying to understand how the adeno differs myself but kind of have the understanding it is the same disease showing up in a different way, in a place (uterus muscle) that is harder to manage surgically. Best of luck with your resolving your endo 🌷