Can’t get a clear answer! Don’t know what to trust and believe…

[Hermi_t]

Hi everyone, so after 3 years of fighting i was finally diagnosed with endometriosis a couple of months ago by MRI.

Initially i was told that i have deep infiltrating endo on my uterus and my bladder. Because of it being on my bladder they were contemplating referring me to a specialist endo clinic to have it removed.

However today my gyne called me to say that it actually isnt on my bladder or my uterus and that its just in my ligaments (still deep infiltrating) so they can do the surgery there (my local hospital). So now im completely unsure what to believe baring in mind that when my MRI was first looked at i was told that there was no endo whatsoever!!! Kind of just ranting but if anyone has any advice on what i should do that would be very much appreciated!

**for context, I’m being treated in France

Thank you x

[Lindle]

Where do you permanently live?

[Hermi_t in reply to Lindle]

I live in France

[Lindle in reply to Hermi_t]

Then your treatment options will depend on what standards/treatment specifications they have in France.

In the UK severe endo is only treated in specialist endo centres and this includes uterosacral ligament endo. This is the most common location for deep endo, referred to as rectovaginal endo, and actually excising endo from the ligaments requires great specialist expertise as there is a nerve that runs in the ligaments that has its root in the spine where the sciatic nerve arises. Ladies with endo there often have referred leg pain (usually but not always the left) and this nerve can be easily damaged by inexperienced surgeons. In the UK we have historically had inexperienced general gynecologists indiscriminately applying diathermy (heat) to the ligaments with permanent pain resulting.

I've put the link below that applies in UK endo centres which confirms that US ligament endo is included under 'Rectovaginal endo' which is deep endo and I would think should only be treated in specialist endo centres everywhere. I don't know if you have standardised treatment pathways in France but you might like to draw on the Feb 22 ESHRE guideline that does apply in France which recommends that deep endo is treated in centres of excellence. I would google all you can to try and find any nationalised treatment pathway for severe endo or whether there are any standards that must be applied by consultants as applies here. I've added the link for the ESHRE guideline (P53 - 'II.3.f. Surgery for deep endometriosis' applies) and a screenshot of the recommendation.

UK specification:

england.nhs.uk/commissionin...

ESHRE guideline (full guideline link on right):

eshre.eu/Guidelines-and-Leg...

Deep endo to be treated in an endo centre

[Hermi_t in reply to Lindle]

Thank you so much for your reply! My local hospital where my gyne is does have a specialist endo team and surgeons i think they just have more resources in the specialist centre in Bordeaux. I have my next appointment with my gyne in a couple of weeks and might ask her if she can refer me anyway just for my peace of mind. If not i might look in to coming back to the uk and go private…do you have any idea what the waiting times are? Im completely out of the loop having lived in france for so long.

☺️