Hi all!
Been floating around as a lurker for many many years.
Just had my diagnostic + excision lap through UCLH last Friday where they did indeed discover and excise endo! The thing that finally made a big difference was my amazing GP who I have now been with for 2 years.
Surgery was smooth, but the surgeon(s?) spoke to me post-op while I was still groggy and anaesthetised. I managed to make a few notes, so I know that:
- I have endometriosis
- It was more extensive than they initially thought
- I had several adhesions
- Evidence that I may have had a pelvic infection in the past.
This is all I can remember (which is wild cuz the nurses said I had 3 surgeons come chat and check on me post-op - I only remember one 😭)
One of my biggest symptoms is unbelievable bowel pain during my periods. Before the operation, the surgeon said that if she found anything on the bowel, she would not perform any excision on it and that would be a future surgery involving the specialist endometriosis team at UCLH + a GI specialist. I don’t recall her mentioning anything about my bowels, so my assumption is it’s not there. It’s also not mentioned in my discharge summary:
> [MY DETAILS] who had diagnostic laparoscopy, excision of pelvic endometriotic
deposits and insertion of intra-uterine system (Mirena) under general anaesthesia. The procedure was uneventful with minimal blood loss.
The excised parametrium and pelvic side wall peritoneum were sent for histology.
> We will write to her when the histology result is out and inform her of any needed follow up.
I received a notification of a post-op review booked in July but no other information. I’m now wondering will be in that appointment. The questions I have are:
- Is there a more detailed post-op summary that I can find, or is it likely they only found endo in the pelvic cavity?
- I’m assuming I’m going to get discharged out of gynae after the appointment. How do I maintain a direct line of communication with gynae as endometriosis is chronic and progressive, without having to get referred back in which will take years again?
- Given that I don’t remember her saying it was deep/pervasive, I guess I’m not going to get referred out to the specialist endometriosis team?
Thanks everyone! Sorry for the long post