Freaked out by rectopexy info.

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Been given loads of info about a laproscopic rectopexy with mesh which is the surgery I need to repair my vaginal bowel prolapse. I need some repair to my bladder also as the bowel has cause some damage. I don't get freaked out easy but I can't get past the fact that the mesh is attached to your back bone. I have been told about potential back pain as a side effect and now knowing where the mesh is attached I'm not surprised! I'm only in my 20s and my specialists are telling me this op only lasts 10 years and each time surgery gets more difficult due to scar tissue created. How are you supposed to make a decision like this when both sides have negatives! My pelvic floor isn't working at all so physio will not help however I am starting on a pericalm machine today with my specialist in the hope it may improve my bladder function. I don't really have anyone to discuss this with so if anyone has any advice at all that would be great. Thank you, Rachael

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  • Posted

    Hi Rach. I'm in my twenties as well and am awaiting a rectopexy with resection - I have internal rectal prolapse (which now on bearing down becomes external by a couple of mm), rectocele, enterocele and perineal descent. I first saw the colorectal surgeon and urogynaecologist in August last year and they very much stressed to me that whilst the repair would hopefully reduce my symptoms, it wasn't a complete fix and would need reviewing in the future. They were hesitant to book the procedure there and then because of this (and also because I haven't had children) and wanted to see if I could cope with "conservative management". I couldn't and things have got worse since August, so I am now awaiting the surgery. 

    I've had to leave my job because of my symptoms and also put my postgrad research on hold. The procedure and recovery does seem daunting but my surgeon is hopeful that there should be some improvement for me that will help me cope with any remaining symptoms that I may have so I can control my life again. I think a lot of the time I've got upset about it it's been over the why and how I've ended up in this state and now not able to be "cured" back to how I was before. I've started to move away from that way of thinking and am hopeful that things will be better, as they are for so many women that have this procedure each year. 

     

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    • Posted

      Thanks for your reply edith, mine is very similar to yours, external when bearing down with perineal decent and interssusception.

      I think I have been getting upset about why this has even happened in the first place and how it has taken a hold on my life! I know it's not a good way of thinking and I should probably do the same as you and move away from it and focus on getting it sorted.

      Sorry to hear this has impacted you so much, I hope your surgery comes round soon. Xx

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    • Posted

      It can be truly miserable, can't it? On a particularly bad day I do find that I feel sorry for myself, but like I would say to you or anyone else suffering, give yourself the space to feel like that for a little while and not add another layer of woe getting upset at the fact you are upset..!

      I don't know if it might help with picturing, but where the rectum is repositioned to is the sacral promontory which is at the top of your sacrum rather than your coccyx. At first, I thought oh god they're going to staple my rectum to my tailbone, but the sacral promontory is of course at the top of the sacrum and "deeper". Picturing this instead is a lot less visceral!

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    • Posted

      I've just seen your reply to Matron and don't want to hijack your reply thread - but our experience is incredibly similiar. I use irrigation as well and got sick to the back teeth of having the "I am sure that I don't want to have children" conversation being met with a wry smile. I still had to keep saying it even thoug even though they had said that i would have difficulty maintaining a pregnancy. 

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    • Posted

      It's very strange how similar our situations are! I have allowed myself a day to feel sh*tty as my meeting with the nurse didn't go great and I was again put in the position where I am trying to convince her I don't want kids however I feel she somehow knows better by the grin she gives me. Grrrrrr!!!!!

      I am in my 20s but I'm not a child!! Makes me feel so mad! Xx

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    • Posted

      I'm sorry to hear the consultation didn't go well. It''s awful having to fight and plead when these are the clinicians that have the evidence of our problems in front of them! It sounds like we have the same nurse... I hope you feel there is some catharsis in sharing your experience with us here; it does sound so similar to my own so you've provided comfort me to me and I hope I can do the same for you.

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  • Posted

    Hello Rachael. It's daunting all the information out there both negative and positive isn't it. Was the use of mesh the only option given to you? I presume your urogynaecologist is one of the specialists on the register who is allowed to operate using mesh which is a good thing because it's use is closely monitored. Back pain is one of the side effects but from experience it is rare because a more refined mesh is now used and as for the 10 year life span then I can only imagine your consultant doesn't have the same results as other areas because the repair is expected to last longer than 10 years. I think if you are careful following the surgery and you don't start lifting too early you will have the best outcome. Only you can make the decision however there are people you can talk to. Most urogynaecologists now have specialist nurses working in urogynaecology. Some are Research Nurses/Clinical Matrons and they give you more time to sit down, ask questions and talk about your fears and concerns.

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    • Posted

      Hi Matron thanks for your reply, yes mesh is what I have been told I need I haven't been offered anything else. I am working with a specialist nurse also who is doing my pelvic floor therapy and showing me how to empty my bowels with the water irrigation system. I am seeing her today and will ask her questions regarding the surgery however I know she wants me to wait until I'm older as I haven't had children yet so I feel I wont get a straight answer. Despite me repeatedly saying I don't want children people seem to refuse to believe me. I'm in a same sex relationship, I have many health issues I don't want to pass on to children and I am on meds that wouldn't even allow me to carry a child.

      Everything just feels like too much right now.

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    • Posted

      I can imagine how daunting this must be and the nursing and medical staff have to listen to you when you say you don't want children. We certainly do when we have a lady in a similar position. Good luck with your appointment today and please keep in touch.

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