I have severe endo and am due to have a full hysterectomy, bowel resection and removal of endo and lesions. Has anyone had the same?

I'm not sure what to expect after the operation and just how long the recovery period is likely to be. I have already had endo removed from my belly button and lap, but this next op is going to be quite major (so I'm told!) and although I can't wait to have it done, I'm feeling anxious about it. I'm 40 and thankfully have my children, so I'm not worried about the hysterectomy, I have no choice now, I just want my life back! Just nervous about what I'm going to feel like after. I would love to hear from anyone that has already been through this. Thank you xx

8 Replies

  • Hey it makes me sad when i see people in a similar situation. After 14 laps removing cysts and endo and my right ovary removed and several failed attempt at ivf i had a full hysterectomy in march 2011. By October 2011 my pain had returned. They removed my appendix in emergency and i didn't Evan have anything wrong in Feb 2012. In march 2012 they found i had a hernia in my groin another surgery. After a heap of tests etc i have now been told the endo is back which i tried telling them in 2012. Anyway not happy as i can't have children and i still don't work or can't have a normal life. I wish you all the luck in the world because i wouldn't wish what I've been through on anybody. I just wish they could find a cure.

  • I felt great for about six months after. lost a lot of weight then after the pain started again i started gaining weight. I went off Hrt about 6 moths ago and have lost 8kg. But i am currently booked in for another keyhole in 10 weeks time will let you know how bad the endo is.

  • Hi. Thank you so much for your reply. You really have been through a lot and it's still not over for you. Is your endo back because they just haven't been able to remove it all? I've been told by my gynae, that I may not be pain free after, but I will have a better quality of life and anything has got to be better than how I feel at the moment. Everyone (family & friends)seems to think that once I've had the op I will be fixed and that's that, but I am worried that it may just be the beginning of an on going battle like yours. I'm determined to put up a fight though, because I'm fed up of watching life from the side lines with my painkillers and hot water bottle!

    I don't know what to say about your unhappiness not being able to have children, it's unimaginable. I just hope that you get fixed and get your normal life back and fill it with so many wonderful things and experiences. Please keep me updated and I wish you loads of luck for your next lap. xxxx

  • Hey faffy73 reading you comments was like reading my story !!! although I'm 52 ! LOL after a rotten year last year where my life was on absolute hold in agony only to be told by GP was IBS and live with it !! I just wasnt having it after 12 visits to GP and 2 scans later with nothing to see...had Lap which found the Endo had returned with Fibroids so had a Hysterectomy in April was a complete relief that it wasn't in my head and to have it sorted by an excellent Gynae Consultant jn Sheffield, ive been virtually out of pain , was off work for 3 months and was slow progress but i did as I was told and joined Hysterectomy UK send for a book which was very informative and excellent advice what to expect,,, but like you said it gave me my Life back

    SO hope you are the same and make a very good recovery !

  • Thanks for your message. I've joined Hysterectomy UK in preparation, think I will send for the book now! Our stories do sound similar, I was back and forth to the doctors and A&E countless times and was told that I was a mystery on one occasion! Once I found out it was endo I was so relieved that it wasn't just in my head too! I'm so glad you've got your life back, it's great to hear that it's possible! X

  • Hi, am four months on since my major op and am just great! Was off work 9 weeks and really rested, built up gradually, explained to my kids they had to help me and despite their young age they were great! I say to people I didn't know how ill the endo was making me feel until it had gone. I do still watch what I lift and am doing pelvic floor exercises. If you can, have laparoscopic and not a belly cut, it's a faster recovery. Have had some waterworks problems, uti etc, but I did have ureter work done so to be expected, it is gradually getting better, and I do still swell up at the end of a busy day...the famous 'swelly belly'! I was so anxious beforehand but so glad now that I did it. The terrible pain has gone, anaemia has gone, bowels normal, I really don't regret the op. Hope that has helped relieve your worries! There's some good support online, try Hysterectomy UK


  • Thank you so much for your reply, you have put a smile on my face and given me hope!! My husband and children are amazing and do so much, so I know that I will be able to take it easy after the op. I have a great gynae and bowel surgeon who both specialise in laparoscopic surgery, so hopefully the recovery as you say will be faster. I'm definitely feeling a bit more positive now, can't wait to be sorted out. Thanks again XX

  • Hi Faffy, just wanted to wish you luck and thank you for sharing your story as It's something I am going to end up having too eventually xx

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