Told all endo removed in surgery, found out months later I was lied to...

[endo_the_stigma]

Hey everyone, long time no post...

Very long story short, I had my first laparoscopy to diagnose and remove stage 3-4 endo in June by someone I thought was an Endo Specialist. After the operation, the surgeon came and spoke to me, showed me where all my endo was found (all over the back of uterus, POD, bowel and diaphragm) and told me she had removed it all. Since then my symptoms haven't really changed much - periods are still very heavy & painful, bowel movements are actually worse and I have just felt like crap still - and I have assumed it was the Mirena coil causing these issues which was put in during my surgery.

However, I have been back to my private specialist (who referred me to the surgeon so I could have it done on the NHS and she was his trainee/registrar) who has told me that he knows she did not remove the Endo from my bowel or diaphragm because she is not trained to deal with either of these areas and would have had to call him to take over which she did not (and he had spoken to her and she confirmed his concerns). So, she completely lied to my face and I have spent the last four months thinking I must be going mad because 'endo can't grow back that quick' so I'm imagining it or its being caused by the coil.

My specialist has now taken over my care and has said I will need another surgery fairly soon as he doesn't want to leave the endo on my diaphragm in case it grows to my lungs and obviously doesn't want it to do more damage to my bowel either. He is also concerned that I am 'high risk' for quicker regrowth due to having it outside my pelvis. I, however still cannot afford to have the surgery privately so am having to be put on the NHS waitlist but I am concerned about things getting worse while I wait even though I am only having another surgery so soon due to the surgeon's error in judgement & communication so why should I have to suffer another 6+ months?

Has a similar situation ever happened to anyone else? If so, did you make any sort of complaint or application to expedite your second surgery on the grounds that the surgeon was at fault and mislead you?

I have been in and out of hospital the last couple of weeks from the pain which is how I ended up finding out this news so, as you can imagine, I am not in a good place mentally and just want all this to be over so I can get some sort of quality of life back 💔

Thank you in advance for any advice.

Lil💛

[Hello33]

Wow I'm so sorry to hear what you have been through! I found out recently that I have also been lied too! I've got it in writing from my Drs as I wanted to take it to a private gyenocologist found out I should have had another operation but I was just written off their books! I might just put in a negligence claim just for the fun of it maybe you can do the same? I wish you all the best stay strong x

[Giraffegreen]

Hi, I was lied to as well. I was told following surgery they'd removed all the endometriosis and I should be good to go. It was only when I requested a second opinion by an endometriosis specialist that I found out none of it was true, that the gynecologist wasn't even present during my surgery, I had some random general surgeon. They'd inappropriately tried to heat treat an area which for me resulted in permanent chronic pain. My notes were incomplete and it was a mess. I put in a complaint the first step was PALS and it went no where they sent a reply telling me they'd contacted the gynecologist and she said she wasn't made aware they hadn't removed anything, they'd lied to her too basically but nothing could be done because I'd requested someone else by the time she realised. I didn't pursue anything further because I didn't have the mental strength but if you do and you have some form of proof then go for it.

As for expediting an appt you could try your GP to make a case for you? Or the private clinician whomever made the original referral may be able to help you

[Lily1986]

I’m so sorry, this sadly seems to be happening so often.

I would firstly contact your hospitals legal team and obtain all videos, photos and reports from your surgery.

Also complain to your MP, PALs, Healthwatch and/ or the hospitals management team.

It’s terrible we have to do this when already feeling absolutely awful.

They’re not caring for us as we they’re paid to. To lie and gaslight us is just appalling.

I’ve had similar experience, was in more pain following last excision. My previous consultant was almost furious when I returned 3 months after excision still in a lot of pain. In fact his surgery left me in constant pain which I wasn’t.

He kept saying all visible disease had been removed but I later discovered this wasn’t the case. MRI confirmed disease had been left and also had returned incredibly quickly. Putting my body through so much was a waste of time.

It’s interesting to read your specialists comments on Diaphragm, he sounds like a good one.

I’ve been told my diaphragm Endo is best off left as it could cause adhesions in dangerous places.

Best wishes to you ❤️