[This post has been edited in line with Endometriosis UK's code of conduct]

[OllieF]

I recently saw a doctor at the endometriosis specialist centre at Kings College Hospital. They said it was my decision whether or not to have a laparoscopy to diagnose endometriosis and they usually only do it for people in lots of pain. They also talked about ablation/diathermy, which I understand from other groups like [this post has been edited in line with Endometriosis UK's code of conduct] is not as effective as excision surgery. I can’t pay privately to see the only [edited in line with EUK's code of conduct] doctor near me who does excision, should I go ahead with Kings or will ablation be the wrong choice? So confused

[Afrohair]

Ablation doesn’t get to the root they may only use that method in awkward areas like the bowl even then sometimes they remove part of the bowl excision is the best to prevent regrowing it will be good to find another surgeon are you in the u.s or uk I understand that the costs are expensive but if I’m uk you could have a private consultation and be referred back on nhs

[Mussya]

[This post has been edited in line with Endometriosis UK's code of conduct]

Are you suffering from pain?

If not, why go through ay type of surgery?

Personally, as I learned endo lesions have many shapes & forms and are great at hiding, plus since encountering the lack of basic knowledge around endo from gynecologists and surgeons - I refused the suggestion of an operation in my local hospital and asked to referred to an endo centre. There's a list fo them on the BSGE website, and they're meant to have specialist drs/surgeons. Most of them are NHS.

Good luck!

[Krithika]

I would trust that excision from a true expert can be a good choice and ablation can make things worse, as statistically proven. I had my doubts, so I surveys hundreds of women who had both done and got my answer. The clear winner was excision with ablation having poor outcomes, there’s lots of research to back it up. Some people do get help with ablation, but I think that’s either temporary or rare in most cases

[Natalie507901859]

Hi, I know you are trying to help but please check your infomation before you post - King's College London hospital has a BSGE accredited endometriosis centre, with several highly trained specialist surgeons. Just because you haven't heard of them, doesn't mean they aren't there, and it's not fair to spread misinformation which may panic people.

[OllieF]

I think this is what I will have to start trying to ask to get a clear idea, as it doesn’t say specifically on any of their profiles. the difficult thing is there is no one doctor I’m assigned to and I get the idea it could be anyone depending on the day

[StefaniaJW in reply to OllieF]

Yes, definitely ask them, that'd be wonderful!

[OllieF in reply to StefaniaJW]

One doctor at least says he does excision over ablation and that you can check with admissions who you would be assigned to and books accordingly

[LittleBlue125]

Hi Ollie - I think my advice is to trust your surgeon. If you're at a bsge centre that's the highest standard in the UK. I had surgery at the Sheffield bsge centre and I had a mixture of excision and ablation - excision for the deep infiltrating and ablation for the superficial. I'd been scared by a lot of people online about ablation as they seem so fanatical - but they're not experts the bsge surgeons are. Having said that endo is so unpredictable and there is so much they don't know there is no guarantee that anything will.completely get rid of it. I have a very good friend who had extensive excision surgery with a renowned expert and it came back. Nothing is guaranteed but it sounds like you're in a good place for treatment. Be kind to yourself and wishing you luck. I've given up second guessing everything as sometimes you just need to go with it and move on making as informed decisions as you can

[OllieF in reply to LittleBlue125]

Thank you, this is very helpful

[Christin_a]

I second what some others have said here. Bsge centres are centres of exilence within the UK for the diagnosising and treatment of endo. If your worried because none of them state what they use to remove endo then call up the secretary and ask the question.

Unfortunately Nancy's Nook has little to no information on the treatment pathway in the UK a is really only for those in the US, their treatment pathways are completely different etc. And they don't have places like bsge centres. And as surgeons have to answer a list of specific questions to be included on Nancy's list alot of them don't because it's not in their interest the way it is for US surgeons, who need people to choose them specifically.

For UK specific based information there are other Facebook groups with information and knowledge specific to the UK such as Endorevisited on Facebook. They have extensive knowledge and documentation about appropriate surgeons in the UK with open conversations about experiences with surgeons and the admins are very involved with being able to tell you if the surgeon you're under is a endo specialist. And how to make sure your being seen by the correct people on the NHS etc.

[OllieF in reply to Christin_a]

Thank you, this is really useful to know

[Lindle]

Nancy's Nook presents the options as excision v ablation with excision being the magic answer. Period. But it really isn't black and white. If everyone having excision with a 'Nook expert' were from then on cured and pain-free for life then perhaps we might be tempted to believe their argument. But we all know that isn't the case and any genuine excision surgeon will say the same.

As yet we only have treatments, and excision is the best 'treatment' we have for the more severe stages (3/4/RV). But that doesn't guarantee good results and in itself is a high risk operation even in the most expert of hands. Ablation is the best and safest method for certain applications and the most expert excision surgeons use it where appropriate. Any surgeon, Nook or otherwise, attacking your ureters, ovaries, Fallopian tubes or going near blood vessels with scissors or a laser cutting tool is likely to cause all sorts of damage. It is about the skill of the surgeon and the area that is being treated. Why there is this bizarre campaign by Nook followers to promote excision only without any consideration of these things is hard to comprehend and does seem to show a lack of appreciation of what is involved. We know excision is recommended for the right applications but it isn't the holy grail it is claimed to be. We really should be credited with the intelligence to be able to research for ourselves without being told what we should believe. If a surgeon tells a woman with endo that they will use excision only no matter where their endo is then they should run a mile. Anyone wanting some clarification is advised to read the article below by Camran Nezhat, the world-renowned excision surgeon who actually invented video laparoscopy.

nezhat.org/wp-content/uploa...

Furthermore, as we know, the Nook surgeons represent a tiny sample of our wealth of excision surgeons in the UK, with some on that 'list' getting very bad reviews outside that group. To forbid any discussion of our many other surgeons simply because they haven't heard of them (demonstrated frequently by the so-called UK admin) can only harm UK women and doubtless already has those remortgaging their homes to see a Nook surgeon who in some instances had failed to apply BSGE standards and left them without follow up and significant disease left in. There are many such accounts.

All the surgeons in BSGE accredited centres must be trained to ALAP standards, but in practice many will have been treating severe endo for many years/decades. Yes, there are some who don't seem to be performing as well as they might, but that applies equally to some on that other list also. Why does endo advocacy have to be such a contest? We should all be in this working together and not competing for knowledge when there isn't anything definitive to be claimed as yet.

[Lindle]

I don't know in what capacity you research and recommend surgeons in the UK such that you are qualified to stand in judgement over our advanced excision surgeons who have done the ALAP ATSM. You say 'they claim to be trained in advanced laparoscopic treatment of endometriosis but it doesn't say whether they only perform excision or not' when the title of the ATSM required as a minimum training standard for advanced surgeons at tertiary centres is quite self explanatory:

ATSM ADVANCED LAPAROSCOPIC SURGERY FOR THE EXCISION OF BENIGN DISEASE (ALAP)

Mr john Bidmead who is lead for the Kings college BSGE Centre for Advanced Endo surgery is an advanced excision surgeon who has has taught minimal access surgery extensively in the UK and internationally. I don't know what protection is given to individuals posting on here under usernames but if I were you I'd be very careful before making such comments since defamation law applies here every bit as much as in the real world.

I see from your profile that you are on here to promote Nancy's Nook, a US group that allows a select number of UK surgeons (9 at the last count) to be promoted on social media over their colleagues, which is directly against the GMC and BMA regulations. I hope members on here realise what is behind all this and that we have so many more skilled advanced surgeons to choose from.

[StefaniaJW in reply to Lindle]

Had he stated he is trained in Advanced Laparoscopy for the Excision of the Benign Disease, I would recommended him.

I am not here to promote any group at all. I often link several other BSGE centres that are not on that list.

What I do is I look and research EVERY single surgeon online to find the EXACT expression "excision". If I can't find it, I don't say anything about that surgeon. Period.

You have to understand there are so many women on here who don't know what the ATSM or ALAP mean or even what the difference between excision or ablation is and I have seen such severe cases you cannot even imagine, so much so that I just CANNOT go out on a limb and tell people "oh yeah he has laparoscopic training. Definitely go to him!" anymore. I have seen people kill themselves because of endometriosis. I have lost friends. I have become so defensive and unable to trust anyone, not even 99% of physicians that unless I see reviews on top of reviews on at least two websites and a clear EXPLICIT indication of training and EXPERIENCE with excision that I just cannot say "yes, go to him/her"

[Lindle in reply to StefaniaJW]

I am still in the dark as to what your position as an Italian is within the UK health sector to be recommending who women in the UK should and should not be seeing. You have regularly told members on here that you have a list of surgeons you can give them if they would like to message you and have confirmed it is the list on a particular US FB group, currently consisting of 9 UK surgeons who allow themselves to be promoted on there against UK regulations. You have said in your above reply ‘I often link several other BSGE centres that are not on that list’, when you should not be linking anyone at all as a recommendation.

You say:

‘What I do is I look and research EVERY single surgeon online to find the EXACT expression "excision". If I can't find it, I don't say anything about that surgeon. Period.’

So presumably if you view several profiles of surgeons on say BUPA or Nuffield pages and excision isn’t mentioned and you can’t find anything else on them you dismiss them? Presumably you are aware that there is not a code for excision and so all these profiles will say ablation of endo unless the surgeon has written a detailed personal profile.

In the case of the surgeon mentioned I am not sure what you mean by 'Had he stated he is trained in Advanced Laparoscopy for the Excision of the Benign Disease, I would recommended him' so your assessment criteria are purely based on semantics in such cases regardless of their known skills based on BSGE standards? In any event a quick search reveals the published article ‘Laparoscopic excision of deep rectovaginal endometriosis in BSGE endometriosis centres: a multicentre prospective cohort study’ on which he was a collaborator along with many of our other highly recognised advanced excision surgeons.

bmjopen.bmj.com/content/8/4...

Whilst a detailed personal profile is of course helpful, a BSGE surgeon doesn’t have to say exactly what their training is on a profile. Obviously women don't need to know what ALAP means (that was for your benefit) only that surgeons working in BSGE accredited centres are required to fulfil BSGE standards and be trained/experienced to that level under The Health and Social Care Act 2012. That is their assurance that they have the required credentials ‘on paper’ and it is then up to the individual to do their own research as to their actual likely suitability by assessing feedback objectively as far as that is possible and talking with the surgeon themselves.

You say you have seen such severe cases I cannot even imagine; what gives you the right to make such an assumption about me? I have been researching this disease for over 15 years and see every presentation on the group I run which is entirely evidence-based. We have the means to check the credentials of any surgeon we might wish to consider and, importantly, our members’ reviews are based on their own experiences and not on someone’s opinion who has decided to choose for them depending on whether the word ‘excision’ is on a profile and their assessment of biased feedback. Patient feedback is only a small part as it is so personal and on my group one of the rules is that it must only be based on a member's personal experience otherwise it will be deleted. We have seen on other groups, especially on the US group whose list you promote that doesn’t allow negative feedback, how second-hand 'positive' feedback can take on a life of its own and turn into relentless promotion of a surgeon that in some cases turned out to be unsubstantiated in the aftermath of negative outcomes for the swarms of women believing it. That seems a very dangerous foundation to be recommending surgeons on.

Ultimately it is the woman herself who should be deciding who she sees.

You say you have ‘become so defensive and unable to trust anyone, not even 99% of physicians that unless I see reviews on top of reviews on at least two websites and a clear EXPLICIT indication of training and EXPERIENCE with excision that I just cannot say "yes, go to him/her"’. To work from a base point of not trusting 99% of surgeons because of your own admitted defensiveness and inability to trust seems equally dangerous in recommending who women should or shouldn’t see since your opinions are necessarily going to be skewed negatively.

Note: since referring to the profile of the person to whom I am replying she has edited it to remove the name of the US group she was promoting on it.