Tibolone and Zoladex, help please?

Hi all, I'm starting zoladex treatment for endo (after a diagnostic laparoscopy) next wednesday along with tibolone to manage side affects, and safely to say I'm dreading it. At the age of 20 I didn't even think about menopause but here it is waiting for me. I know its only temporary but I'm still scared. The doctor says I'll probably only get hot flushes and a bit of bone loss but I'm still terrified I'm going to end up a fat old lady with osteoporosis and a beard at the age of 20! Especially as I stupidly researched it online and read all the bloody horror stories! I read tibolone can cause hair growth and I'm a tad worried. Although the sheet that comes with the tibolone says it affects 1 in 10, the NHS website says it affects 1 in 100 so I'm not sure who to believe. Do any of you have any experiences of Zoladex and tibolone you could share with me? Any help would be greatly appreciated. Thanks, Poppy.

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  • Hi Poppy, just wanted to let you know I'm joining you on zoladex too I have my first injection on Friday. I have been on it before and it worked wonders for me. The only treatment that really has to be honest after 7 laps and every other hormonal treatment out there over the last 11 years of diagnosis. I have not had tibolone though I'm having fem seven patches as they worked well for me last time. They helped with the hot flushes and night sweats and my mood didnt really change. If you don't get on with the tibolone maybe see your gp or Gynae and ask for a different type? I was on prostap many years ago and they gave me livial but that was awful for me as brought back bleeding and pain and didnt help the flushes at all so I guess everyone is different. One thing I have learnt from Endo treatment it's a trial and error thing and what may work for one person may not for another. Good luck to you and I'll let you know how I am after Friday.

  • Hi Poppy. I'm 20 too and had my course of Zoladex when I was 19. In the first couple of weeks when I was adjusting to it, I had hot flushes, headaches, and things like that but after my body began to adjust it was too awful! I obviously had the hot flushes still and some tiredness, but nothing I couldn't manage. I didn't have any tibolone with it, so can't help you on that one I'm afraid. Obviously it does differ person to person :) hope it goes okay, take care x

  • Thank you so much for responding, you've really, really helped me :) Good luck with your first injections Missylm, I'll be thinking of you! 11 years is a bloody long time and I hope it helps this time round! I've not heard of Fem seven before, but then again I'm new to this whole rigmarole. Lival is the same as tibolone, (I googled it) apparently I just got the generic version. Hopefully it'll work okay for me, but as you suggested I can always go back and ask to have it changed. Elmo29, have you had any lasting side affects after you've come off of the zoladex? Thank you both for responding, you've really helped and I appreciate it so much. :) We can beat the beast that is endo! :) X

  • Hi! im also having my first injection on Wednesday, im not really sure what to expect, as far as I know they aren't giving me anything to manage the side effects, so im a bit nervous that they are going to be horrendous. Have they said to you what they expect you to get out of the injections? I know they gave them to my mum to see if her pain would stop once in the menopause (it did, and she had a hysterectomy a few months later) but I know that's not their idea with me, they have told me that the effects could last for a few years after just a few injections (as in...the pain wont come back) im just feeling a bit sceptical about it!

    Good luck with it!!

    x

  • Hey ladies, I had my injection yesterday, had a local first so then didnt feel the implant going in. Not felt anything from them yet just a bit of a headache last night. He said it will be a week before it kicks in. And not to start my patches for 1-2 weeks. Laur87, it's supposed to halt the Endo from growing and hopefully shrink any patches that you have.. That's the gist of what I got from my Gynae and looking online. It can be a while to get periods back afterwards so again I guess this also helps. I know some people do go without hrt so maybe see how u go and if your struggling go to your gp and ask if you can try some. Good luck to you both for weds, let me know how u get on and I will update in the week also xx

  • Glad to hear all went well with your implant! I had mine and I was just wondering if it is standard procedure in the UK (Are you guys from the UK?) to have a local first? I had my implant yesterday and they didn't use a local, or, in fact, any numbing agent whatsoever, and holy shit didn't it hurt! I nearly cried! I mean have you SEEN the size of that needle? And that went in my gut with nothing to stop me feeling the pain. I too had a bit of a headache but I just put it down to me gritting my teeth so hard as it went in. Ah well, only five more to go!

  • Oh my god I cannot believe they did it without any local or numbing cream?? Are u getting it done at your gp? Ask for the numbing cream if they won't do the local, they can prescribe it to you so u pick it up from pharmacy before the next one and put it in an hour before your injection. Def dont suffer!! It's a mean old needle. My Gynae did my one but the next is the nurse at the docs and they said they will sort me out the cream. How's your symptoms have u had any? I got some night sweats but put my patches on and have been fine! Touch wood it stays like that, although still in pain

  • Sorry my brain isn't working tonight I meant put the cream "on" not "in" and I meant side effects not symptoms...

  • Hi, I'm about to have my third implant, yes it pinches a bit as its not been numbed. I also started tibolone at same time. I found that initially i put on about a stone but that was more due to my very limited movement from one end of sofa to the other. The pounding headaches etc all calmed down significantly after 2nd course. I also found endo diet helpful. Now im moving about and able to work again for last 4 weeks and have also lost 16lbs, without exercising persa. Hope this was useful xx

  • Hi, I'm suffering bad with endo and hrt, what is an endo diet? x

  • I haven't had any side affects yet but its not even been a week. I'm getting on okay with the tibolone so far, although I only started that a day before my first injection. Sadly no difference with the pain, I think the laparoscopy has made things worse, going to the toilet hurts my ovaries. Go figure. I'm getting my implant done at my GP's and from what the doctor implied a numbing injection or cream is not standard practice and the nurse just told me "it hurts less each time as you know what to expect." I hope she's right but I will ask and see what they do. Sorry to hear you're still in pain though :(

    monkeymagic72, I'm guessing you don't have any numbing agent put on before you're injected either? It doesn't half pinch does it! Not nice. What is the endo diet? Have you had any side affects other than the head aches? Glad things are improving :) I've got to say I'm not feeling so positive myself and am dreading the side affects that will probably hit me as well as the possibility it won't work.

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