Second surgery in 12 weeks for severe endo. Advice needed?

I was diagnosed with stage 4 endo during a laparoscopy and cystoscopy in April. Consultant referred me to anothef consultant who specialises in bladder endo. In meantime I started with Prostap injections but I feel terrible. Pain, fatique and a feeling if being overwhelmed by everything . The new consultant has advised to treat this agressively and go for excisional laparoscopy to remove from around pelvis and to open the bladder as he feels this is the quickest way to get relief. I feel confused and can't trust my judgement. I know this surgery poses more risks and it terrifies me but trying to weigh up the pros and cons. Has anyone been in similar situation and has light at the end of the tunnel and what to expect during recovery.Thanks

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  • Hi Hun I had to keyhole surgery 2 years ago. And they found endo on my bowl and ovary and tubes I got them removed I had open surgery . It didn't take lone for me to get back to normal and back to work. But my endo came back. And I got told it is on my bowl now and am running the toilet 5 to 6 times in the night with my bladder. But what has stopped my pain and slows your endo down is prostap injections. And you do have side effects but there only mild Hun. Av come off them for a break and you do feel sick and overwhelmed by things but it gets better good luck and let me know how you get on lucky_ 7xx

  • Thanks so much . I think I was initially just relieved I had a diagnosis but starting to understand this is just the beginning of managing the condition vs curing it. Will let you know how the surgery goes and of course the dreaded bowel prep xx

  • Do be warned that prostap doesn't work for everyone though!! I haven't had any relief - in fact I'm in worse pain now than ever before. It works for some but not for others.

    As for surgery, don't worry too much about it. At the end of the day, that's the only thing guaranteed tk take the Endo away...for a short while. Endo hasn't got a cure so nothing will get rid of it fully. No painkillers will work fully, no hormonal treatment will work for every patient, no surgery will fully remove Endo and stop it from coming back. If any of it did, they'd have to class that as the cure and since we don't have one, that proves that not everyone responds well to everything.

    The best thing to do is stay positive and focus on one thing in life. For me, I want children. I'm going to start trying later this year so I'm focusing on finishing prostap, having my lap and then trying. Then I'll be focused on the baby and not having much time to think about the Endo. Then when the baby is old enough, around 2-3, I'm planning on going to uni to finish off my training as a midwife. That plan for me keeps me going, I've set reachable goals and that way I'm focused on doing something so I can build up to it. When I didn't have any plans, I felt lost and unsure of what I was meant to be doing. Just think of two or three things in life you want to achieve and go for it.

    I hope you get better soon. Good luck with surgery.

    Leya xxx

  • Really good advice and comforting to know other people are going through this. My GP signed me off work until the surgery in June as I know stress is making it worse. I am very lucky as I finally have a GP who listens. I am loving your goals and think will use the next few weeks to have some me time ;) Have you changed your diet at all as have heard in can help manage symptoms but not sure if is true ? Thanks so much x Clare

  • Hi, I'm in the same situation as you, and am actually having the op on 19th June. It's being done by 2 specialist, gynae and urology. The plans is to open the bladder, remove then endo, stitch it back and hope it doesn't come back. The procedure is called a partcial cystectomy. I'll be having open surgery as it very close to uterus and my surgeons feel that they'll have a better view if open. I'm not bothered either way, I just want it gone, and get on with trying for a baby. At the moment we've been trying for a year and no luck so they think the bladder endo is having an effect. I've done a lot of research and feel that surgery to remove bladder endo is the best option, and if removed completely it shouldn't reoccur in the bladder. Reading the literature hormonal treatments are quite ineffective for bladder endo, so considering surgery is scary but the best option. Hope this helps. Xxx

  • That really helps and although I dont want people to feel like this it is reassuring that others are going through it. The hormones have made me feel worse if anything so am starting to feel more sure that surgery is the correct approach. Good luck for the 19th and let me know how it goes xx

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