Endometriosis UK
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Agree to Surgery or Refuse??

Hello

I have stage 4 Deep Infiltrating Endometriosis affecting uterus, ovaries, bowel and rectum. By my assessment I've had endo for 25 years. Diagnosed last year. I've been advised by gynae and colorectal surgeons that my only option is open surgery, colostomy bag, and analogue drugs to induce menopause. I am requesting a second opinion at the BSGE clinic nearby.

I read and head alot about the risks associated with this extensive surgery, but what I don't know is what are the risks if I refuse surgery. (I did have this on my list of questions to ask surgeon but was so shocked by his description of the procedure that I forgot to ask!)

Can anyone shed some light for me?

Im especially keen to hear from anyone who has said No to surgery and how they are doing.

Thank you x

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I had surgery for this sort of endo including a large RV nodule last year - I was told by my local gynae that I would need an abdominal hysterectomy, went on to have keyhole surgery at the big bsge centre in London where they fully excised all endo including from my bowel. I was warned about the possibility of a bag but in the end they were able to shave the endo from my bowel. Most women do not need a colostomy or resection. The drugs to to cause a temporary menopause (zoladex, prostap etc) can be given before surgery. You don't need surgery to have them.

I can't stress enough how important it is to be seen at a bsge centre if you have bowel endo - it is in the NICE guidelines. I would hold out for this and refuse surgery until you've been seen there. x.

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Thanks for replying to my post. Yes, perhaps I should just wait and see what they say at the bsge clinic. Do u know how long it takes for referral to go through?

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I was due to have my next lap in March which I ended up cancelling as I didn’t know if I could face such a massive surgery (bowel resection, possible colostomy bag, possible hysterectomy etc). I have fought this surgery for 3 years as I simply just didn’t want to put my body through another operation. I think this will be my 5th lap and 6th operation in 5 years or something ridiculous.

However I’m now having the operation in a few months time because I really talked through my fears with my consultant and he listened to every one and found a way to work around them. I also asked the question of what would happen if I didn’t have it and he just said that I would probably end up needing a much bigger operation down the line with far more aggressive intervention. A lot of this is down to my absolute refusal to take a lot of the hormonal treatments offered as I have wobbly mental health and I don’t want to do anything which could impact that, so it may be the case that it could be managed with menopause-inducing drugs etc.

I’m stage 4 and I just came to realise that I need the operation and the one person I trust to do it is my consultant (who is semi retired) so I didn’t want to miss my chance of him doing it.

It’s a horrible decision. Nobody *wants* to elect for something when we know the recovery is going to be tough for body and mind and it seems grossly unfair. I really understand your dilemma :( xxx

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Hi. Thanks for ur reply. Your reason for being cautious about the hormone treatment is exactly my reason.. I told my consultant of my fears and that for me, as mum to a 6 year old, my mental stability is crucial and something I've worked hard to achieve. He just shrugged his shoulders!! This could have meant a few different things, but none of them helpful. He made me feel silly for raising it so I'm glad to see ur post. (Though sorry u have this to factor in also).

2nd opinion sounds like best option.

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That’s awful that your consultant doesn’t value mental health, it’s a huge consideration especially as you say you have a little one to look after. I think a second opinion would do some good as even if they agree that surgery is the only way, at least you will know you have exhausted all your options :( hopefully you find someone that is sympathetic to your mental health as mine is. Best of luck xxx

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