Help loads of endo still left in bowl and can't be taken out without high risk

Still in state of shock as told that even after lap and coil my endo is still very bad. Large amount struck on bowel and told it would be very dangerous to operate.

Now I can't cope . Feeling endo has finally taken over my life completely.!!

Has anyone had op on bowel for endo.?

Difficult to cope today with two little children and feeling so scared.

9 Replies

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  • So sorry to hear this, the option would be to really try and stick to the Endo diet to see if this helps. I have not personally had a bowel op for endo, more for adhesions and I have trouble with my digestion, can only stop terrible bloating by having a semi-liquid diet, smoothies and soups and one normal meal a day. Hopefully a drug to put the body into an early menopause could help you, xxx There are other options I am sure apart from surgery.

  • Thank you. Unfortunately had three lots of enforced menopause with awful side effects so desperately trying not to have more.

    I know others have had surgery for this and wondered how they got on.

  • Hi - yes I had endo on the bowel and successfully had it removed with no further problems - that was over 2 years ago now. I believe your consultant said it was too dangerous for it to be removed, but I believe you should get a second opinion on that, and make sure it is a recognised centre of excellence for endo. Maybe, he said that because he himself was unable to do this.

    I wish you all the best in finding a surgeon who will be confident in helping you.

  • Thank you. My consultant didn't say it was too dangerous to do, just that it would be quite a dangerous operation. I am at a centre of excellence and he us a very experienced guy in endo. Which is probably what worried me!!

    Where did you have your op done?

  • Hi Meme. I have had experience of a bowel operation. Your consultant is warning of risk because it is dangerous. Although I would emphasise that my experience was in the minority, I never thought the risks of surgery would happen to me. A successful op resulted in a ruptured bowel 1 week later. this caused an infection, heart problems, collapsed lungs, open wound on my abdomen, at least 4 more consecutive operations, intensive care, colostomy then ileostomy. 2 years later and I am lucky to be alive and after all this I still have severe endo, alhough the pain has improved for now. The risks are very real and surgery is not a guaranteed cure :-( I am not trying to scare you but emphasise the risks are real and any decision to operate should be considered carefully. again I was one of the lucky ones and a lot of people have very successful bowel surgery. I hope one day to be able to come on here and say I have a baby and it was all worth it. Time will tell. Good luck with your decisions and I hope this message doesn't scare you but empower you to make an informed decision on what risks you want to take with your body. Ultimately the decision is yours x

  • My original op was performed at a centre of excellence with a highly experienced gynae consultant and an expert bowel team on standby.

  • Thank you for replying. It is right to know the true dangers of these ops. The trouble is when faced with the consultant I seem to go into complete panic . This condition has completely taken over my life and that of my whole family. Two young children are having to miss out in so much nowadays, it really is not fair to them.

    Sorry for moan just feeling really down today.

  • I think it is perfectly natural to feel panicked. It must be so much harder to make decisions on treatment for endo when you have children to consider too. The pressures in choosing what happens next are immense. I guess my biggest disappointment is that I expected to have an operation and be cured, when the operation in fact nearly killed me. I have finally learnt (the hard way) endo is a disease to be managed (whether through diet, drugs, surgery etc) but not cured and consultants have the best intentions but ultimately I accept it's my choice what happens to me. I didn't read any of your comments and think you were moaning, I can relate to a stressed person who is having to face a horrible disease and make impossible decisions.

  • Thank you - it is nice to speak to someone who understands. Tomorrow is another day!!

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