Anyone had a laparoscopy and the consultant didn’t remove any endo?

[Cowgirl3]

He said mine is wide spread and is too risky to remove. I’m waiting for a second opinion

[Lindle]

Which country are you in in the UK and was this in general gynaecology?

[Cowgirl3 in reply to Lindle]

I’m in Staffordshire but had the op done in a Cheshire hospital and yea it was just general gynaecology

[Lindle in reply to Cowgirl3]

So it's a good thing they didn't attempt to remove any of it as they are not allowed in general gynaecology assuming it is deep endo. You now need referring to a tertiary endo centre. It's beyond words really if they still don't know this. This is the NHS England treatment spec that applies - your GP can refer you.

england.nhs.uk/commissionin...

[Cowgirl3 in reply to Lindle]

So the consultant told me that I had 2 options, 1) to get pregnant(been trying for 4 years) 2) to turn my ovaries off for 6 months and apparently the endo will shrivel away(his words)

After my op he come round and spoke to me literally 2 mins after I woke up, I can’t remember that conversation. So I rang the hospital and asked what they had found to which they booked me a phone consultation with the consultant. I’ve only just found out what they actually found and what stage I am after having that phone call. And I wasn’t hooked in for a follow up or anything, I was discharged.

[Lindle in reply to Cowgirl3]

He clearly has no knowledge of endo at all and shouldn't even have operated on you.

[Cowgirl3 in reply to Lindle]

Thank you for replying to me 🙂 I’ve now got an appointment next week privately so I can get a second opinion. And I will get on to my GP and see what they say about referring me.

[SVGee in reply to Cowgirl3]

I took matters into my own hands after being seen by a general gynae. Also as the wait list for diagnosistic in Wales was over 5 years and I couldn’t wait that long. I sought out a specialist and went private. Even the initial consultation you can see a difference in knowledge. Well worth you getting that second opinion privately, and if you can afford to do so, continuing that route. I gave up my flat and moved in with family because I was confident I’d get the best treatment. ImNow 2 weeks post op and the specialist removed endo he knew would have been missed by general gynaecologists.

[Nikneja]

Yes my first one there was too much to remove as it was a gynaecologist who did my laparoscopy and they wanted an endo specialist to remove it all so had to wait about 6 months for a second operation

[Cowgirl3 in reply to Nikneja]

I’m so sorry you had to wait another 6 months 🥺 I hope you’re doing ok now? X

[Lily1986]

Yes. I’ve had this happen twice with diagnostic laparoscopies, they’ve opened me up and realised the endo was too severe and high risk to remove there and then.Once was my very first lap and the second occasion was when it grew back worse, which it has done again.

I was rebooked in for excision surgeries a few months later on both occasions where they needed a few surgeons present to deal with each area where the disease was present.

Prior to the excisions I needed to have consultation with bowel surgeon, urologist and fertility specialist. I also needed a chemical menopause to try calm the disease down before the last excision but it didn’t work as much as they’d hoped.

Sadly it’s grown back again on bowel despite having left ovary and both tubes removed.

I’m sorry you’re having to go through this.

Feel free to message me any questions anytime.

Best wishes to you xxx

[Cowgirl3 in reply to Lily1986]

I’m so sorry, it sounds like you’ve had a tough time 🥺 did they manage to remove all the endo when they had the right specialists in the ops? Xx

[Bobs0207]

Hi,

Yes this happened to me May 2021. Doctors didn’t believe I had endo but I finally got a lap done. They found stage 4 endo way more severe than they were expecting (they weren’t expecting any… because they didn’t believe me!). The surgeon wasn’t an endo specialist and didn’t feel comfortable removing it so I was referred to a specialist. Am still waiting for an operation date to have it removed.

[Helena45]

I had the same experience, diagnostic laparoscopy but nothing removed during procedure, performed by an endo specialist at a BSGE centre. Mine is widespread with ovarian endometrioma and lesions on bowel and ureter. The Consultant followed procedural guidance that they don't perform excision until they have discussed all pros and cons and have the other relevant specialists alongside to assist surgery. There are very strict national guidelines that they adhere to both for patient safety and to stay within informed consent legal requirements. It's frustrating to have to have subsequent procedures but I certainly wouldn't have appreciated my surgeon performing an oophrectomy without my consent.

[haimfan94]

Just be aware that not all private consultants are equal. I saw one to speed up my diagnostic process, and the main good result is that she had me get a second internal ultrasound, by a private consultant on harley street. he was a specialist and scanned basically every organ in my abdomen and found where my endometriosis was (pouch of douglas) which was totally missed by the nhs scan. but then back with my private gyno to discuss the results, i realised she was really behind the current endometriosis guidelines as she told me that an IUD was a pointless treatment. I was able to use the private diagnosis and scan to get referred back into my local endometriosis clinic, which wouldn't have happened without this sidestep. so all in all i've managed to get the right doctors looking at me, but it's taken a lot of project management and my own research. Just to warn you in case your private doctors end up being a mixed bag!