Endometriosis sticking my womb and bowel together, need combined op!

I'm wondering if anyone could give me any advise. I'm 26 and was diagnosed in 2013 with stage 4 endo. In my laparoscopy they found my womb and bowel are stuck together. Yesterday I saw a specialist surgeon who specialises in very severe cases on endo. I have been advised to have a combined surgery to separate my womb from my bowel but they said the risks of causing damage to my other organs is higher than a regular laparoscopy. I'm in a dilemma as to wether to go ahead with the surgery or not. I feel that I don't have enough info to know wether it's worth me going ahead with it given the risks. I also have to go onto zoladex injections (I think that's what they're called) this also concerns me too as in 2013 I was put on prostap and have never felt so terrible in all my life. The operation has to be done in 2 parts. It all sounds pretty scary and I don't know what to do. I'm trying to weigh up if it's more of a risk to have the op or not to have the op? Has anyone else had/need this surgery? If so what would be your advise? Also does anyone know what the risks are of damage being caused in one of these more complex operations? Thanks in advance!!

13 Replies

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  • Sorry don't have an answer but is a really good question as I'm in the same boat . Mine are stuck together too and I'm waiting on my post op appointment to let me no what's what with the plan.

    Have they given you choices of what's next?

    Xx

  • Hey thanks for the reply! They have said its up to me wether to go ahead with the surgery. If I'm not to have the surgery then I must go onto the implant to help my symptoms, the problem is that this won't sort out the bowel and womb being stuck together. They didn't really offer anything else. The only thing that will sort the problem is surgery. I have a lot of questions I want to ask them now that I have come away from the appointment. What I wonder is, is it more of a risk having the surgery on not having it. If this is left and I don't go ahead then I could need a bigger operation in the future. Do you have to go onto the injections too if you go ahead for surgery? Good luck with your post op! X

  • I literally have a million questions that keep popping up to ask.

    They have opened me up. closed me up & told me it's extensive that my womb and bowl are stucj together . Now I have wait until 8th Feb for a chat about my options.

    Im completely in the dark.

    What op would you need in the future if left it ? Xx

  • Apparently if I leave it there is a chance I would need a bigger operation called a complete bowel resectioning. The waiting isn't the best but at least you can have a proper think about questions and wether or not you want to go ahead with the surgery. Are you recently diagnosed? Getting more info is helpful especially at the beginning. I know how you feel about being in the dark, not the best that's for sure! X

  • Hi, I had a similar operation a year ago and it was successful. They had to separate my uterus from the bowel, and it was all done in one surgery. I was warned about damage to the bowel and I think they said it was 1-5% chance. In my case I was on pain daily so I thought it was worth the chance. If you have doubts maybe you can put a list of questions together and send to your surgeon? What are your symptoms like at the moment? Feel free to ask any questions

    Merry Christmas xxx

  • Thanks for your reply! That's good to know that your surgery went well. The main symptom I have daily is stomach problems. I have an upset stomach every morning and on a bad day I have to go to the loo after every time I eat a meal. Pain wise I'm okay throughout the month but really bad the week I have my period. Thanks for the advise, I'm going to try and arrange an appointment with my surgeon to talk through some of the questions I have! Merry Christmas to you too! X

  • Hi I had a subtotal hysterectomy in march 2013, my uterus was completely stuck to my bowel and they had to leave my cervix behind as that was stuck to my bladder. I'm now awaiting surgery to remove my cervix, ovaries, tubes and full excision of endometriosis and will also need a bowel resection to correct the damage done from my uterus as it has collapsed, if I were you I think I would go ahead with the surgery as if the general gynaecologist that performed my hyst new what was going on with my insides then maybe I wouldn't need specialized surgery now. Good luck 🍀 and all the best 😊 xxxx

  • Hey Heidi, you make a very good point about not waiting too long. This really makes me think that it's probably best to have the surgery very soon in the future to avoid needing an even bigger operation. I'm sorry to hear that you have ended up needing such a huge surgery, I hope that it all works out well for you and that you feel much better once you have had your next surgery! Take care! X

  • Oh I will also need a further oo on my bladder once healed xx

  • I also have my bowel stuck to my uterus and am having op on 4th Jan (only 9 more sleeps to go). I cant remember a day when I wasn't in pain. I hardly eat anything as I seem to have started with intolerance to everything so hoping op will sort it out.

    Are you seeing an endo specialist or just gynaecologist as I think this can make a big difference.

    The way I feel I just wanted surgery as I really don't want to live my life as I have for the past year but we are all different.

    Definitely compile a list of questions ready for next appt.

    You say Prostap caused you problems. Can I ask what because I think it was that that made me worst. I only had 2 but had to stop as I started with gastritis and acid reflux 8 days after first one and am sure they caused too many hormone problems.

    I hope you get your answers quickly, I relate to each and everyone of you on here and particularly at this time of year when everyone is enjoying themselves and all you want to do is crawl up in a ball and die, I never knew I had so many tears in me.

    Big hugs to us all xx

  • Yes I've just been referred to an endo specialist. He was very good actually, I saw him on the 23rd. I also had the same problems as you when I was on prostap. Christmas has been really hard this year, I was really unwell yesterday, couldn't eat any of the Christmas dinner which was rubbish because it's one of the best things about Christmas. I've always loved my food but recently I'm so sensitive to everything and can barely eat somedays. Then I end up feeling nauseous because I'm so empty. just trying to weigh up what to do right now. I'm going to go back the see him and have a really good think to decide wether I think it's worth going ahead! Thanks you for your advise and feedback. Good luck with your surgery! X

  • Hi. My first lap op revealed extensive damage. So they just closed me up and referred me for major surgery...excision. bowel was stuck to one ovary and other was stuck to side of body. Not much of a choice re surgery as pain was not manageable and life was not with living. Due to endo on bowel, was then diagnosed with IBS. Risk of surgery was damage to bowel which would result in colostomy bag. Was first thing I checked after op. Surgeon has left some endo on bowel but he would rather do that than risk piercing bowel. Successfully separated from ovary. Will always have bowel probs and am now on bowel meds as well as endo meds but would have been worse without op. Your endo will continue to grow and symptoms will worsen. I'd say have the op...good luck with your decision.

  • Hi I'm sorry to hear what difficult choices you have to make. I just wanted to offer another perspective though as I think surgeons will always try surgical solutions but these may not always be the best option. I have stage 4 and had major surgery a couple of years ago and it feels like it's all grown back as bowel issues worsening but I saw a bowel specialist nurse the other day and she talked about working with lots of 'endo ladies' who regret having multiple surgeries as their symptoms don't necessarily improve and they often talk about wishing they had not had further surgeries after their first one and trying non-surgical options. It made me really think that I'm personally going to try to avoid further surgery but I appreciate everyone's case is different! Good luck with your decision X

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