Light at the end of the tunnel?

After suffering with endo for what seems like a lifetime, I am booked in for a hysterectomy at the end of July. Up until 8 months ago I was having the Prostap injecton which worked for a long time and kept symptoms pretty much at bay. Following a bone density scan they found some bone density loss in my lower spine, so had to stop the Prostap injections. I have had 2 periods, the first one was ok, but the second one 3wks later is awful. I have a range of symptoms but my pain is worse first thing in the morning when I walk up, lower back pain and pelvic pain. The pain is at its worst when I need the loo, so I guess that's why I suffer badly when I first get up. I take pain killers constantly and the pain is like tooth ache always there, but I do get days when its so bad I can't function. The pain has always been worse for me outside my periods. Some days I look like I'm 6mths pregnant with the bloating. I get 2/3 days when I actually feel ok then the cycle starts all over again. I have to suffer for a further 5 weeks then fingers crossed everything will be ok. I hope so because its affect my life and at 43 with an 8yrs old son (who we struggled to get because of the endo) I need to be well again.

7 Replies

  • Have you tried excision? Have you been seen by a real endometriosis specialist? There is a lot of "mis-treatment" by well intentioned but uneducated physicians.

  • Excision? I will look it up. Yes I have been under a consultant for 10yrs+, 4 laparoscopies, so I know I definitely have it. I have looked up my consultant and he is the leading one in the North West, so I am confident he knows what he is talking about.

  • Hi :)

    Trust in your consultant is so important, and I am glad you have that sort of relationship with yours.

    That being said....have a read of this article...I am usually hesitant to ever quote the Daily Mail but this is worth a read. A hysterectomy is a big operation with huge repercussions at your age and no guarantee that it'll work in terms of making things better, so make sure you're aware of everything before you go into it

    Good luck, and lots of love

    C xxx

  • I am 17 months post hysterectomy and for me it has changed my life. Sounds very dramatic I know, however having had various operations and treatments the pain and distress of miscarriages and just pure misery i finally feel good for the first time in years. I will stress that I did not make this decision easily. My quality of life was horrendous most days I ached from head to toe struggling to walk my son to school, sleeping all the time moody,out of breathe stomach complaints, bladder infections, the list goes on. I was struggling to hold on to my job things where getting so bad.. I had to make the devastating decision to give up on more children having struggled to have my beautiful boy. Endo ruined my fertility. I had a spell on pros tap first which was great for the first couple of times. This also helped with the decision to have a hysterectomy. Unfortunately I could not continue with pros tap as it caused depression. Before I had my operation I did loads of research as I wanted to be in control of what was happening and informed. It really helped and helped with my recovery, which is lengthy. I made sure I had a good support network this is key to recovery and I did exactly as I was told for once. Lol :0) I had surgery in January 2012 and in sept 2012 I did a London to Brighton bike ride. Something I wouldn't even have considered before.. This isn't a miracle cure for all and shouldn't be gone into without lots of deliberation... The flip side of this is I am now in surgical menopause and suffer from hot flushes and achy joints nothing like before, and mood swings. I am on hrt which has taken a while to find one that suits me also they can't be oestrogen based as this can inflame any remaining endo that is left in your body. So it's a balancing trick. I have to take extra calcium and vitamin d to prevent osteoporosis. I think diet is a big help also and I have seen a dietician due to celiacs disease which is heavily linked to endo... That's another story, diet has helped with the flushes and mood. Hysterectomy is a painful and difficult operation both physically an emotionally, I had a wonderful surgeon who helped me exhaust lots of avenues before I resorted to surgery. I now have a very full life of swimming, cycling, running and keeping up with my 7 year old son. Which is a blessing. I also couldn't have done this without a very loving, caring and very patient husband. Do lots of research and good luck with whatever you decide.

  • Thanks for this, defo food for thought. I agree it's not a decision that shud be taken lightly, but unfortunately for me it's the last resort. I am lucky enough to have a wonderful 8yr old son Dylan - who we struggled to get coz of the endo. I count my lucky starts every day we have him. The hysterectomy will ensure I can enjoy my life with him again without being in constant pain. I have told my husband he may need some earplugs ha ha xx

  • I have also suffered with Endo for years. I had it lasered away in 2000 and had a baby in 2007. I am 45 now and after 13 years it has come back with a vengence. I am currently on sick leave (about 2 months) and am about to have a diagnostic laparoscapy to see how bad it is. I can only potter, every day I have pain and it is worse in the morning for me too and when I need the loo. I do have some hours pain free until I start to move about, as in shopping or normal housework. My pain is constant in the lower right hand side and I can't do anything after about 10 minutes. I asked for a hysterectomy but my surgeon has said he doesn't think it would work. I haven't had any energy for years and would love to be able to run around with my daughter, now 5. I think I will press on about a hysterectomy. Thanks.

  • I have had 4 laparoscopys and had laser treatment. The prostap was the only thing that worked for me. It got rid of 80% of the pain - which after years on struggling it was like a breathe of fresh air. I really feel for you, you sound to be I a similar position to me. I have been with my consultant now for 10yrs+ so he knows me and my case very well. He has always steered me away from having a hysterectomy because I was too young, but when I went back to him this last time, he admitted this was my only option and I have tried everything else and it hasn't worked for me. Don't feel that ur on your own, I know exactly how ur feeling. Some days ur at yours witts end. I will let you know how I feel after my op. Take Care xx

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