Hello - any suggestions ?

[Madeline_]

I'm Madeline, I have stage 3 endometriosis with history of endometriomas on my ovaries. I was diagnosed formally in 2023 with MRI and laparoscopy. After removal of a moderate cyst and 6 months on Prostap 3 i'm trying to make informed decisions about how best to manage my endometriosis. I have had experiences with both private and public health care with varied quality of support. I just don' know whats best for me. I feel like i've gone through a lot in the last year just to be told i wont be scanned unless severe symptoms occur again and that I am to simply to on the mini pill. While this may be a bespoke option - no one will tell me why!, leaving me sceptical having done my own reading and listening to others.

Has anyone else been here ?

[Lindle]

Endometriomas are most often associated with rectovaginal endo which is classed as severe. Did the MRI show that?

[lin1992]

What is it you are trying to manage about your endometriosis? Do you have an endometrioma causing pain currently that you would like to have surgery for removal, or do you just have generalised endometriosis pain/other endometriosis symptoms which you would like to manage? If the former, I would recommend asking to be put on a waiting list for another surgery. If the endometrioma is causing sufficient pain you should be able to insist on surgery. Your consultant may want to do an ultrasound/MRI first, which is fine. Otherwise if you are just looking to manage your endometriosis better and to slow/stop its progression then I'd really recommend healendo.com. You can buy the book 'Heal Endo' by Katie Edmonds if you like or you can just read everything on the website for free. She has an amazing approach to making diet and lifestyle changes which really truly can put endometriosis into 'remission'.

Btw I wouldn't say being put on the mini pill is a 'bespoke option' exactly - it seems to be common practice in the UK as a 'treatment' for endometriosis. There seems to be only 2 treatment options offered by consultants, both private and NHS, and those are surgery or hormone treatments (pill, mini-pill etc), or both. It seems it is up to those who want to manage their health better to do their own research and implement their own diet and lifestyle changes.