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Livial/Tibolone Beware

Posted , 10 users are following.

Guest
Guest

I am 53yrs old and was precribed Tibolone in January this year unfortunately this coincided with me going into full time work involving 2hrs travel per day. Since January I have felt more and more exhausted (even having to drop a days work to a four day week, and drop a days pay!!!) The aches and pains in my joints (particularly my knees and shoulders) have got worse, excruciating pain in my thighs and hips and I presume because of the constant pain I have become very depressed. Also swelling and pain in every joint in my fingers. My doctor has done all my bloods (normal) and then sent me to a rhuematologist who dignosed fybromyalgia. Life was hard and infact at times I thought I would be better off dead :-( Well...to get to my point approx a week ago on a Friday I realised I had run out of my Tibilone, I was a little worried but there was nothing I could do, I just had to wait until Monday to even put a script in at the Docs. By Sunday I realised the pain in my thighs and knees had eased a lot! by Monday my mood was so much better, I actually felt happy for the first time in months! I tried to think what was different? why has there been this change in my symptoms...I was looking at what Id eaten or not eaten then it dawned on me TIBOLONE!!!! I googled and got this sight and thank GOD I did. since I stopped this horror pill that Friday I have got better and better and feel I have a life again. I dont think I have Fybromyalgia I feel the side effects of Tibolone mimic the symptoms of Fybro. I know this HRT has worked for some but there are an awful lot on here that have had similar dreadful side effects so please anyone that is considering taking it just be mindful of how dibilitating the side effects can be. My hot flushes and insomnia were NOTHING compared to what I have been through..I will put up with them standing on my head than take any more HRT that could cause this again.

6 likes, 16 replies

16 Replies

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  • sandy17
    sandy17

    Posted

    hi,

    i know this is an old tread, but would still like to know what you did? i am 49 and removed my ovaries 2 months back, doctor has suggested livial, but i have yet to take it.

  • Debedee
    Debedee Guest

    Posted

    I was getting a little relief from hot flushes and more sleep but hadn't realised that my arthritic hands were so painful because of the medication until I stopped it!   I have now been diagnosed with endometrial carcinoma stage one Have to have a total abdominal hysterectomy. Hopefully lymph nodes will be clear so won't need further treatment.  I wonder if Livial is to blame?
  • joba
    joba Guest

    Edited

    I had very similar issues, but I lasted only 6 weeks before giving up in disgust.  I guess tibolone is good for some but definitely not for me.
  • shelley333
    shelley333 Guest

    Edited

    Hi there, I started taking tibolone 3 weeks ago, and am wondering if my muscle aches,  stiffness and low mood are related to this medicine. Prior to that I was using oestrogen patches for 2 months and I felt great (except for low libido, which is why I switched to tibolone).

    So far on tibolone...

    - hot flushes mostly gone

    - no improvement in libido

    - significant back, hip and thigh stiffness and pain (I was wondering if I had fibromyalgia)

    - low mood and loss of interest in things - not quite depression but it's going in that direction. 

    I'll keep going for another week or two with tibolone and may consider stopping if these new symptoms continue. 

    Anyone else experienced similar?

    Shelley

    • joba
      joba shelley333

      Edited

      I have never felt so much pain, put on so much wait, bloated and nauseous ... and only a day or two after I stopped taking tibolone I felt really well, no aches, pains, headaches ..  hmmm
    • joba
      joba

      Posted

      damn autocorrect ... Wait = weight smile 

       

    • shelley333
      shelley333 Debedee

      Posted

      No I didn't persevere, stopped the tibolone after 4 weeks. I'm pretty sure it was responsible for significant worsening of my neck/back pain, and definitely for my low mood and disinterest in things - bordering on depression. These both improved within days of stopping.

      Now back on the oestrogen patches, which are great for the hot flushes, my mood is back to normal and minimal musculoskeletal pain. Libido still non-existent though :-(.

    • Debedee
      Debedee shelley333

      Posted

      I need help with the flushes, my Libido is non existent too!
    • Lydia1982
      Lydia1982 shelley333

      Posted

      Yes, I've experienced similar to you.

      If you look through the comments, you'll see what symptoms I've had, except for the fact that I've also had low mood and depression. I'm in chemical menopause, which is why I'm taking Tibolone, and waiting for a hysterectomy and oopherectomy. The low moods could be because of progesterone intolerance.

  • ursula95933
    ursula95933 Guest

    Edited

    Hi Guest

    I am 68 yrs old and have been put onto Tibolone which I have used for almost 2 months now and am still experiencing extreme back ache stiffness and swollen painful fingers. I also felt bouts of anxiety so have decided to stop and see if there will be an improvement in my symptoms. These dreadful symptoms have fully cost me dearly as I cannot continue doing my care work. I have told my Dr about these

    symptoms but she feels I must continue. I find it so difficult that professional medical

    people doubt what one tells them about what is experienced in ones own body. They

    have a dilemma as we are all individual and need individually suitable HRT treatment

    and we could help guide them from what we experience.

    wishing you all the best

     

    • Debedee
      Debedee ursula95933

      Edited

      My advice would be to ensure smear test up to date. My hands are so much better sine I stopped taking Livial.  I still need to get help with the damned hot flushes as I don't get enough sleep.  Is will see my Gyny once I am recovered from the hysterectomy.
    • nat86421
      nat86421 Debedee

      Posted

      similar experience to you- i had hoped hysterectony would stop a lot of issues but stRting Oestrogel 6 months ago has caused pelvic swelling and pain abd terrible constipation which makes me think Oestrogel is fuelling my endometriosis. Naively i thought Endo woyld stop once periods stopped -Take care my friend xx

  • Debedee
    Debedee Guest

    Posted

    We have so much in common it's unreal.  I too am 53 and my job moved to the City (I live in Melbourne) so I went from a half hour drive to a drive to the train station, I came to the city and then tram to the office. To do this I get up at 5am every morning which is not realy hard for me because I am very much a morning person. But because of the hot flushes I rarely get more than two hours sleep at one time so I never get that really deep sleep. I have arthritis in my hands which doesn't really give me too much trouble other than they look 20 yrs older than me but after five months on Livial I was thinking that I was going to be disabled as far as my right hand was concerned.  I too had unexplained pains throughout my body my knees. The flushes however had started to calm down a little and sleep, maybe a little bit more solid but not enough to make me feel well. Then I started with some light bleeding, to cut a long story short I was sent to a gynaecologist had a D&C & polyp removed then sent to an oncologist and have just had a full hysterectomy because I had a tumour in my uterus. My smear's are up-to-date I get one every two years and the same with a monogram. My advice to anyone thinking of using Livial is to have a smear test, make sure there is nothing nasty there because what Livial will do is feed it.  
  • cass87050
    cass87050 Guest

    Posted

    Hi everyone,

    I really need some advice please?.

    I have been on Femostan both doses and then moved to Tibolone because I felt edgy for the 14 days on Femostan. I am 42 and perimenopausal. i still have a womb etc. I have history of depression and anxiety and am on sertraline 200mg.

    I have only been on Tibolone a month and half but this last week i have felt depressed and my anxiety these last couple of days is through the roof. i have started with headaches. I have looked at different forums who say stay with it but i seriously dont know what to do.

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