So basically I’m going in for my surgery Monday as I had laparoscopy done in August and found deep Endo on my uterosacral ligaments and pouch of Douglas. My surgeon explained that because it was very deep and close to bowel that the surgery would be a lot more tricky so I would need further surgery and would need to stay in overnight. Anyway to cut a long story short I had a form through explaining I would have ‘excision of severe endometriosis’ plus dye test etc. So I got my date for Monday had pre op done over the phone and went for covid and mrsa swab today. They just gave me a pack of forms and I’ve been given a leaflet about laparoscopic laser surgery.
Somebody correct me if I’m wrong but I was under the impression I would be having the endometriosis cut out but I assume it will be laser. Does anybody know much about this? I feel like nobody has really explained what I’m having done or anything really about it and I get it’s because covid has made things hard but I still don’t what I am actually having done on Monday?!
Any help or advice would be much appreciated! X
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Chloelouise92
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Understand how you feel, if the surgeon is an endo specialist they should use excision, most likely as the leaflet is on laparoscopy, they just haven’t thought it through. Maybe a leaflet hasn’t been produced on excision, wouldn’t surprise me. What time do you have to be there?
I was told they are a specialist but he’s come from Bournemouth so not been down here very long and different from my previous surgeon! Just feel a bit out of the loop like I’m going for surgery on Monday yet nobody has actually told me what they’re doing to actually do on me! 🤦🏼♀️ 7am so I’m pleased about that x
You’ll have time to ask questions beforehand, write them down so you don’t forget anything. I gave the registrar the list, but she couldn’t answer all of them and have it to the consultant. It worked out well as it gave him an option that made it lap instead of open. Don’t be afraid to ask. If you aren’t happy, they won’t force you to do anything.
Do you know his name, it should be somewhere on the paperwork? At the moment surgeries are all over the place to avoid covid.
Yeah I did think this but the only thing is I don’t really know which option is better! Excision or laser?! But then I don’t even really know what they are planning to do anyway. Yeah I know his name I couldn’t really find anything online though. Not sure if I’m allowed to put his name on here or not?
Just making me a bit stressed about it as I don’t really know what’s going on 🤦🏼♀️ Oh yeah you can definitely say that! It’s obvious that they are massively overworked x
Excision is the ideal, but it can also depend on where it is. I’ve listened to US endo specialists and they’ll use both if need be. I think one said if it’s on an ovary a quick burst of ablation can better for fertility. They seem to take it very seriously over there and if they do specialise, don’t do much else. You can’t put names here, if you want pm me that’s ok.
Your thoughts are perfectly normal 🙂, any op is a big deal. The first consultant said he’d never had an op, I thought thanks for that 🤣
Op last week all paperwork had hysterectomy down nothing about endo, did eventually get an email from the secretary confirming. Because that’s what he does, they don’t mention it, not helpful. 🙄
We rely on this to make it all feel better, it adds to the stress. Other operations you are pretty sure of the outcome, this disease gives uncertainty.
It’s one of those that you can research but there’s seems so much info to know and like you say there’s no real certainty in any of it! It’s the unknown all the time...and of course in the middle of a pandemic everything is just heightened isn’t it!
Paperwork is always unhelpful because half the time you read it and never understand it and then you’re told different to what you’ve read! My notes said excision of severe Endo and dye test but yeah the leaflet is for laser laparoscopic surgery so who knows! I’ll be honest I never really had a full explanation of the last op but I have deep infiltrating Endo on the pouch of Douglas and uterosacral ligaments. No idea what this means really or how bad any of it is, which sounds crazy because it’s my own body but things just haven’t been the same recently being able to book a gp appointment etc is near impossible! I’ll pm you if that’s ok thank you x
Exesion is only option for deep endo,may be they use laser in few parts where they cant cut ,and I agree with that your surgeon will see you before u go to surgery ,you can ask him anything in your mind but again if he is endo surgeon deffinetly go for excision .If he is not an endo surgeon its better not to go with him.Good luck x
Yeah this is what I’m hoping that the surgeon will sit and go through it all with me. I know come Monday I’ll be too nervous and won’t ask any questions x
Chloe asked what was better - excision or laser and you replied 'Excision is the ideal' and then mentioned ablation in relation to the ovary. This gave the impression that laser is ablation and clarification was needed that laser and excision are the same when used as a cutting tool. It is ablation when used for vaporisation.
This explanation is better, in my mind I went to ablation rather than the instrument. Laser can be used as burning and cutting. By replying that way to me it was incredibly rude on a support forum.
First of all laser is a tool not a method and can be used for ablation (vaporisation) and for excision when used as a cutting tool. It is preferred by many excision surgeons over more traditional tools such as surgical scissors as it is associated with less bleeding and less adhesions.
The priority here is to know that deep endo such as you have must only be treated in a specialist endo centre in tertiary care by a multidisciplinary team that works to BSGE standards, to include two experienced lap surgeons, plus colorectal and urologist as/if required for the bowel or urinary system aspects (such as the ureters which are very close to where they will be operating). It must not be treated in secondary care.
You can't name surgeons on here but is your surgeon included in a team on this list:
No they aren’t on that list. I don’t know if it would make a difference but I was told they are very new to the hospital and have come down from Bournemouth. I was told they are a specialist but they definitely aren’t in that list from that link you’ve just sent me. I don’t know what to think really! I’m no expert so I can’t claim to know what the best thing is etc, but I haven’t been told very much at all so just got a lot of things going round in my head to be honest! X
Unless they operate in a multidisciplinary team in an endo centre in tertiary care it is actually against regulations. There are some who aren't on the BSGE list though who do work in such centres that fulfil the standards - can you send me a message with the name of the surgeon as you can't say on here. x
This is a support forum ! to answer excision is the best method depending on location of the endo if the specialist is using laser it could be only in certain areas which are difficult to get to some specialists use both so you need to get clarification to exactly what's being done
I’m hoping that the surgeon will tell me all on Monday as I know he will come and meet me anyway. The surgeon before who done my laparoscopy in august was definitely a specialist but I’m not sure about this one! Hopefully I will get all the answers I need Monday before I have it done x
I really hope you do it's sad you haven't got to meet your surgeon could you find him on google perhaps to find out his specialism I found one of my gynaecologist by googling his name and he wasn't specialised I immediately cancelled the laprascopy as my instinct told me from day one I wasn't getting the right care he kept talking about my misscarrige and not the endometriosis so I knew he would say no endo would be found on exam he didn't do the exam correctly to feel for the endo when I had the one done by a specialist he felt it straight away so I will say trust your instinct aswell if it dosent feel right you can delay ring the secretary and say you want to reschedule to give you time to gain more information they are ok with rescheduling I actually cancelled mine as I wanted it done right first time I didn't want multiple surgeries some ladies have had multiple I've still not had surgery for my endo as currently expecting but I may need to in the future x
His name does appear on a document linked to BSGE but other than that I haven’t really seen anything else. Guess I’ll have to wait until Monday and see what is said before the surgery! X
Hopefully you may even meet the surgeon I know that a lot of the specialists are moving location a lot lately as I had to reschedule the location of my private appointment As he was changing base and quite a few are moving about so there may be limited info around x
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