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🥰💛
Written by
endo_the_stigma
To view profiles and participate in discussions please or .
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
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.
I’m so sorry to hear that you had something carried out that you hadn’t consented to, that must have been really upsetting. I thought it might be helpful to share that when I was discussing the whole ablation vs excision argument with my private endo specialist he said that it’s not as simple as excision is always best despite me saying this was the NICE guidelines. He said that as far as he’s concerned the evidence base for excision being better isn’t compelling and that what matters the most is the cells being destroyed, not how this is done. In addition, he said in reality different nodules or areas of endo call for either ablation or excision depending on things like size therefore most surgeons will use a combination of the two even if excision is used for the majority.
Completely agree with making the complaint regardless as for them to have done something you didn’t consent to without a pretty good reason, like risk to life, seems wrong. I just wanted to try and maybe reassure you about the ablation that sadly like everything in this field it probably isn’t as straight forward as that being 100% bad/wrong, or at least to share that other highly qualified and experienced specialists don’t think it is.
Really hope you’re feeling better from your surgery soon and hoping this helps to calm worries about the ablation somewhat.
Morning. This happened to me but it was a long time ago when I didn’t know any better and didn’t ask questions, Just trusted everyone. A private surgeon but done through the NHS.
For me, my operation(s) didn’t help. I wish I had more knowledge back then, I was in my thirties and I’m in my fifties now with a lot more knowledge under my belt. And a lot more years and experience of endo pain and heavy bleeding.
I didn’t think about it for ages (years actually) or the words full endometrial ablation until I was asked recently if I’d ever had one, by a gynaecologist after an ultrasound to investigate post menopausal bleeding. I explained it was done after my surgery to “reduce my bleeding” (mine was not deep excision cut) it was burned off or cauterised by laser surgery. So 2 invasive procedures that didn’t particularly help me.
Her letter to my GP says “as she’s had an endometrial ablation we wouldn’t be able to get a coil into her” I was particularly interested in this wording as various others have offered me a Mirena coil but my gut instinct always said ‘no” so the end of her letter was the first I knew about this.
Interesting. Hope you get some answers and some pelvic peace.
I’m sorry you’re going through this, I too have the disease very severely including on bowel.
I think this is because of the damage excision would have done to your bowel from excision, especially if there wasn’t a bowel surgeon present at your surgery.
The bowel wall isn’t that that thick and it’s high risk of perforating if excised.
What they should have really done is gone in for a diagnosis and then stitched you back up as soon as they saw the bowel involvement. Then planned a joint surgery with a colorectal surgeon as well as endometriosis specialist.
Mine has been shaved from the bowel twice and now my bowel is badly scarred and no longer works. Currently awaiting bowel resection with a stoma.
The first place it always returns to after excision is always the bowel.
Have they referred you to a colorectal specialist? I would strongly recommend this to avoid you getting the problems I’m now having later down the line.
Just reading through your experience and I am horrified.
Performing a procedure on a patient without their consent and without informing them afterwards is surely against professional (and possibly legal) standards.
This consultant should be reported. You can raise official complaints with the hospital but in my past experiences some hospitals do everything they can to cover things up/not take any responsibility for wrong doing.
You should still make a complaint but also notify the integrated care board for your area to ensure it doesn’t get brushed under the carpet.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Endo detection after surgery
severity of endo
Bowel shaving/resection and hysterectomy. Anyone had surgery for these together in one surgery?
Really confusing appointment with my gynae!!
BSGE Gynae said he will remove with ablation ?! Advice please
