I need advice im so confused

[Chocolatefanatic]

So 4 years ago i was diagnosed with endo cia a diagnostic laproscopy. This year i was re-refferred to gynae (the ones that refused to see me before my diagnosis as they claimed it was not gynae related) . I had an mri that showed endo in a few places and less than a month later i was admitted due to the pain. They did an ultrasound which showed my ovary attached to my uterus and a negative sliding sign( which is normally adhesions) and possible adenomyosis. So 5 months later im back with general gynae who say i need to go to the end specialist and the multi disciplinary team. Now i just get a call to say they have all reviewed my MRI (this didn't show my ovary being attached or the possible adhesions) and they have now told me they dont need to be involved as i just need a diagnostic lap to determine endo? I dont understand why no one will see me and why the ultrasound wasnt taken into consideration - i know they are specialists (as i was rudely told) but something isnt right i have alot of symptoms that show my bowel is affected but now they said i should go back to general gynae. I stood my ground and said i want the specialist to review me. But they just want to review my symptoms and might not even do surgery? I guess im wondering if i should stick it out and hope they stop making me feel so small or should i get referred elsewhere? Has anyone been in anything similar?

Sorry for the long message im just so lost.

[Tangoandmax]

Hi, I experienced drastic differences on MRI reports between the general gyne team and the BGSE centre findings. General gyne report said DIE, involving bowel wall, multiple organ tethering (uterus to bowel/ovary to bladder), BSGE centre said no bowel wall involvement, ovary attached to uterus/pelvic wall and DIE of pelvic walls/ligaments. I went to a recommended specialists privately to see which they sided with - they said my MRI scan looked completely normal could offer a diagnostic lap if needed but they couldn’t see anything out of the norm, it’s beyond frustrating knowing who to listen to/borderline ridiculous how often the gyne and specialists get it wrong.

I think you’re right to want to specialist to review, simply as they’re more equipped to deal with whatever is found when they go in, general gyne are known to miss all sorts, if it’s not their specialism they shouldn’t do it unless it’s a diagnostic in my opinion. With you already having a diagnosis I’d push on for the specialist.

I had my first lap with the BSGE centre in August, they located endo as reported on my MRI. Therefore, their interpretation of my scan was correct.

[Chocolatefanatic in reply to Tangoandmax]

Thank you that is helpful. Its so frustrating i have all the symptoms yet it seems no one wants to deal with me.

[BloomingMarvellous]

Am a touch confused here- you were diagnosed via lap 4 years back.... endo isn't something you have and then you don't have... A diagnostic procedure I presume is to update themselves as to the extent rather than treat ???

It sounds to me as if they don't really know or are t really that qualified to analyse the information they have before them. Insist you are sent to a BSGE centre instead and go to PALS for back up . You deserve efficient and proper care and treatment not being run round the houses.

[Chocolatefanatic in reply to BloomingMarvellous]

That makes two of us! Yes i was diagnosed via lap 4 years ago but im assuming they havent read my notes and just reviewed the MRI as they said i had “suspected endo”. They stated i would need surgery to confirm if it is endo or not so guessing they read nothing about me?

I have said i want to see the endo specialist still. I currently have a complaint in with the hospital so waiting for the letter that states what they did in the MTD meeting before adding to my already very long complaint that they keep making longer.

None of it makes sense but the nurse who was in the meeting sounded shocked i had already been diagnosed?

[BloomingMarvellous in reply to Chocolatefanatic]

Asking for the endo specialist isn't the same as a BSGE centre unless at your hospital there is a BSGE centre ....