Should I be referred to a BSGE Endometriosis Centre for confirmed excision?

[gettingusedtoendo]

Hi

I have been put on a waiting list for laparoscopy with confirmed excision at my local hospital. This is to be carried out by an ‘endometriosis specialist’ I have had an appointment with. As my MRI picked up cystic areas and a large adhesion between rectum/bowel and uterus, I know that I will be having excision carried out. The specialist has told me he does not believe in using laser.

A poster on here mentioned to me that NHS hospitals should only be carrying out exploratory laps and that if excision is to be carried out, we should be referred on to a BSGE Endometriosis Centre. It was also mentioned that excisions undertaken in regular gynae wards sometimes lead to further pain/do not remove all endo and so trigger more adhesions etc. I wanted to expand on this a bit because it was news to me and not something the specialist I saw spoke of at all. I am obviously a bit worried.

As this dr is considered an endometriosis specialist I wondered if this made a difference?

And if I should be referred to a BSGE centre, do I need to make contact with my GP?

Thanks so much for taking the time to read and answer.

Lauren

[Lindle]

The general hospital can carry out excision but only on stage 1/2 endo along with uncomplicated endometriomas. Note that laser is most often used for excision nowadays - it is a tool rather than a method. There are criteria to be fulfilled for referral to BSGE accredited centres which are suspected severe endo (by scans/clinical exam) or confirmed severe endo. You fulfill this criteria by having rectovaginal involvement. The consultant should know this. Your GP or the consultant can refer you. Please feel free to pm for further details and references on how the referral should be made.

[gettingusedtoendo in reply to Lindle]

Thanks for your help, Lindle I read that cutting was more precise and was seem a gold standard but there doesn’t seem to be anything very concrete on the internet.

Although I have an adhesion I had a sigmoidoscopy a couple of days ago which was all clear, the endometriosis is not inside my bowel so I wonder if that makes a difference.

Feel a bit stuck as GPs seem a bit clueless about endo

[Lindle in reply to gettingusedtoendo]

Whether or nor excision or ablation are appropriate depends on the stage and location of endo and is about the skill of the surgeon over and above anything else. There are several situations where excision would be too dangerous such as close to the bowel, ureters, and on delicate structures like blood vessels and the Fallopian tubes. It also can't be used on the ovaries. The black and white notion that excision is good and ablation bad is too freely circulated on the internet when it is far more nuanced than that. A suitably trained skilled surgeon will know when to use which. Excision in the hands of a non-expert can be very dangerous.

As mentioned laser is a tool rather than a method and is used for both excision (cutting) and ablation by vaporisation. Ablation by laser is preferable to diathermy that uses heat to burn endo and can damage surrounding tissue and also leave endo behind since it is not possible to see when healthy tissue is reached. On the other hand ablative vaporisation uses a small focus of energy that destroys cells layer by layer without harming surrounding tissue and allowing healthy tissue to be seen once reached. It can't be used on deep endo though as it would take forever.

Endo rarely infiltrated through full thickness of the bowel but still required advanced skills to separate it from the uterus. Basically apart from uncomplicated endometriomas anything else that shows on MRI or transvaginal ultrasound will be outside the realms of secondary care.

[Spireite]

Pretty much all the UK BSGE centres are based in NHS hospitals, it sounds like you may already be at one if you are being offered excision over ablation. Check on the BSGE website to see if your specialist and current hospital are listed on there.

[gettingusedtoendo in reply to Spireite]

Thank you!!

[Lindle in reply to gettingusedtoendo]

Unfortunately there is no way of knowing from what you have said in your post - excision is carried out in both secondary care by those in general hospital gynaecology with a special interest in endo, so with additional training including in excision, and in tertiary care (specialist endo centres) where they have highly specialised advanced training. It isn't based on whether or not you are offered excision but whether the referral criteria are met which means you must fulfil the definition of 'severe' endo in the NHS England treatment specification for tertiary centres. I would guess you currently are not under a centre.

[Tewks1978]

I’m really interested in the responses here. I was treated for stage 4 endo in November 2014 by a surgeon at a private hospital. He is not a BSGE specialist and it was not a BSGE hospital. I was not told or advised at the time that I should face been seen by a specialist clinic. I had another operation last week as my symptoms have returned and been told by the same surgeon he cannot treat it due to the amount of adhesions around my ovaries, bowel, rectum and bladder and he’s now recommended a hysterectomy. It did mention that the nearby specialist team was Bristol, but they are more geared towards fertility issues, so his recommendation is still the hysterectomy. I’m now concerned that my issues were worsened by having surgery done in 2014 by someone that wasn’t a full endo speciaist. And even more concerned that he now thinks the only course of action is a full abdominal hysterectomy. Should I now be insisting on being referred to a BSGE centre for a second opinion?

[Nicjane in reply to Tewks1978]

Sorry to hear about your situation. I was dialogised stage 3 in 2018. This person claimed to be a specialist and done excision but i cannot find their name on any BSGE list or any other specialist, also things they told me like ' you are too young for endo' before my diagnosis is quite the red flag, she appanrelty took every bit of endo within 40 minutes which is doubtful. i haven't had much relief i will be honest. I would definitely get a specialist opinion and ask for a referral, by NICE guidelines i believe if you are stage 3 or 4 you must be taken care of by a specialist. I'm confused about my instance too. But will be adamant to see a true specialist one day. Good luck! keep insisting! x

[gettingusedtoendo in reply to Tewks1978]

I really hope you get some answers. I’m sorry to hear you have been through so much

[Christin_a in reply to Tewks1978]

Yes you should be insist on being referred to a bsge centre. You have stage 4 so you merry the criteria. Your Dr or consultant should be able to refer you. But it must be under tertiary care not the usual choose and book system.

[Lindle in reply to Tewks1978]

On the NHS it is required by law that you are only treated in a tertiary specialist endo centre for severe endo or a history of severe endo - under the Health and Social Care Act 2012. When having private care you must not be disadvantaged in any way compared to what would have applied on the NHS so this surgeon is advising completely inappropriately and actually against the law. I would avoid him at all costs and ask your GP to refer you to a centre in accordance with the NHS England treatment specification for severe endo in centres. I will pm you with how you should be referred.

[Tewks1978 in reply to Lindle]

Thank you. I really appreciate your advice on this.

[Lyly2323 in reply to Tewks1978]

Hi there are few specialists in the UK who can deal with your type endometriosis. I had stage 4 attached to my rectum. Used to bleed there too. Sorry a bit graphic. Asked to be referred to one of the specialists. Had a total excision. Removed part of my rectum. I am here 6 years later no endometriosis symptoms. Only few related to fibroids. And one side effects is constant constipation. Please ask to be referred. You can message me if required more information. Good luck

[Tewks1978 in reply to Lyly2323]

Thank you. This gives me hope that there are more options/treatments to be done x