zoladex and livial........help!!!!

I had my 3rd zoladex injection last week with 3 more still to go, i also have to take livial daily. Has this treatment actually worked for anyone, ever??? I am in pain almost daily, sore on both sides, pains in thighs, lower back pain, headaches, joint pain, nausea, sleep patterns messed up, at times i can't sleep and at times i'm exhausted. I am trying so hard to go to work every day as if I miss many days I be sent to our HR dept. Going to work each day is proving very hard as I am in pain at lot at work, the pain is so bad at times it takes my breath away, I can't stand up straight, walk with a limp etc. I am normally a very positive person but this endo has changed me and I am not the same person anymore, just want to get back to being me. Any help or advice would really be appreciated xxx

7 Replies

  • hey ...that was one thing obviously as well as the pain..but endo changed me alot..and i have to learn to accept it...its not easy and im still trying to figure it out...im sorry its not quite advice..xxxxxxx

  • Hi Missee, thanks for answering me. I'm not in a good place today so fed up and emotional, I hate being like this!! Did you have zoladex injections and if so did you find it worked? Hope you are feeling ok today xx

  • Hi Tracey

    Have you had a laparoscopy yet?

    I'd never heard of one when my consultant suggested I try Zoladex and livial. At that point i was wiling to give anything a go so i did for 9 months. At first it really helped me. It didn't take my pain away completely but it eased it enough for me to get on with normal daily things. After about 3 months the pain started to gradually get worse. The only other option I had been given was a hysterectomy so I spoke to a friend about it. I didn't know but she too had suffered with endo. She told me about the laparoscopy and that they had cut her endo out which had left her pain free. I went back to the consultant after 6 months and asked for a laparoscopy only to be told that they wouldn't do one now because the Zoladex would have shrunk my endo and they would be unable to find it. So another 3 months on Zoladex went by. Like you it made me ratty, completely changed my get up and go, sex was a complete no no, terrible backache and aches in my bones especially my hips, hot flushes.....it was terrible. My endo pain all the time getting worse. On my final appointment with my consultant I managed to persuade her to let me have a laparoscopy even though she had now given me a date for hysterectomy. I had my lap yesterday and woke up to find I had severe endo and adhesions which had stuck my uterus and bowel together. They were able to remove everything visible and if the pain returns there is the option for me to have a keyhole hysterectomy.

    I was so happy that I nearly cried, 1 because although I was sore from the op the constant nagging pain in my pelvis and back had gone and the other because it proved it wasn't all in my head.

    The point of this very long post (sorry) is that you know your body better thaN anyone. If it doesn't feel right then it probably isn't. If Zoladex isn't working for you go back and make sure you demand to try something different. If I'd of know about the laparoscopy procedure it would have saved 10 months or more of suffering.

    Do your research and don't let the consultants push you into anything you don't want,

    Lots of hugs

    Sarah x

  • Hey Sarah xx I had a lap in December 2012, I went in for the removal of what they thought was a dermoid cyst but when they went in they found I have extensive endo, I was covered in it, my bowel was stuck to my pelvic wall and some other bits and pieces stuck to each other. I was ok for about 2 weeks afetr the lap and then the pains began again!!! My consultant has said that if this doesn't work I will probably have to have more surgery, I would really rather not have to go down this road again.

    In mAY 2010 I collapsed at work with horrific pain on my right side, went to A&E but was fobbed off,I was taken to A&E a few more times, I then eventually got an appt for ultrasound dec 2010. About 1 week later my partner had to take me there AGAIN. I was given an tramadol injection by the Doctor and was told that if I worked I would be sent home. Thankfully I was violently ill everywhere around his surgery but then he left me for 1 hour laying on the floor in the waiting room to see if the injection would kick in, all the time I was being sick. He eventually admitted me to Hos. The next morning I had emergency surgery for the removal of a dermoid cyst which had ruptured and twisted. When I woke I was told they removed my right ovary as it was so badly damaged. I am just fed up of all this, just want to be me again.

    I really hope your lap works and make sure you take plenty of rest to let your body recover, if you need a chat I'm here.

    . thanks for taking the time to answer me and I too am sorry about the long post :) xxx

  • I also had a dermoid cyst removed 7 years ago, while they were doing the op they noticed I had two endo spots burnt them down and that was that, 7 yrs later am in agony getting worse everyday feel like an old lady. Today I got re diagnosed and putting me on hormone treatment....god am hoping it works :(

  • i'm very sorry you're having a naff time but actually happy as you've described my symptons to the 't' and i don't feel so alone/crazy! had two laps last year which gave short relief started zoladex (5 so far) and livial to see if pain stopped if so consultant suggests full hysterectomy 1st month excellent downhill from there like you i really suffer with thigh pain hips pelvis and lower back pain, the leg pain wakes me up so always knackered have really changed as so worn down have found hot baths, co-codomol and loads of chocolate helps!!

  • Hey Claires, I am glad that I'm not the only one with these symptoms. At times I feel like I am alone and no one understands. I hope you get sorted soon, my consultant doesn't seem to want to do much with me because of my age, I am going to try to be more demanding when I get to see them again June/July, if I remember correctly they said I may have to see a specialist or more surgery if the zoladex doesn't work, oh the joys!!! :)

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