Endo ablation without my consent

[endo_the_stigma]

Hi all!

I had my first laparoscopy last month where they confirmed extensive endo was found in four different places, as well as adenomyosis, and as agreed they removed it all. The day of my surgery before I went down to theatre I asked the surgeon (being done on the NHS) to confirm that they would only be performing excision, not ablation, as my private specialist had made it clear that I should not have ablation due to the risks of endo growing back much quicker and/or making things worse in the long term. The surgeon said 'yes, excision only don't worry' and when I came out of surgery and she showed me all the photos of where it was found (one of these places being a large nodule of endo on my bowel) she said it had all been successfully removed so I was happy.

However, a couple of weeks ago I had a letter through the post from the surgical admin team to my GP explaining what was found & done in surgery and it said 'excision of widespread endometriosis along with ablation of a larger nodule of endo found on the bowel'. Obviously this rang alarm bells straight away and shocked/confused me as I had been very clear that I only wanted excision and nothing about ablation was mentioned when she explained their findings and removal of the endo.

So now I am a little unsure of what I should do next? I have made an application for all of my surgical records and photos to be sent to me so I have all the information and evidence but what do I do after that? Just a PALS complaint or something else?

I am also concerned, due to previous comments she (the surgeon) has made and an unpleasant experience with her I have been told about by someone else, that she may not have removed all of the endo and/or may have done other things during the surgery that she hasn't told me about. So I am wondering if it is a good idea to take my records and photos of the surgical findings back to my private specialist and see what he thinks?

Apologies for the long post but I am just in a bit of a spiral about all this (plus, I'm almost 5 weeks post op and still in pain every day and very very exhausted constantly - although this may be my adenomyosis and mirena settling).

Thanks all🥰💛

[Lindle]

Presumably this was done in a specialist endo centre? Are you in England?

[endo_the_stigma in reply to Lindle]

My private endo specialist at my endo centre referred me to one of his surgical team on the NHS because his waiting list was too long with the amount of pain I was in. yes I'm in england

[Lindle in reply to endo_the_stigma]

So it was a NHS BSGE accredited centre?

[endo_the_stigma in reply to Lindle]

Yes (I've just double checked)

[Lindle in reply to endo_the_stigma]

Would you mind sending a dm with the name as you’re not allowed to name on here. I run a big UK endo guidance group and it would be interesting to see if we have had complaints.