1. Community
  2. Women's health
  3. Menopause

LIVIAL(TIBOLONE) - A warning....

Posted , 6 users are following.

LadyPink
LadyPink

Heloo Ladies, After 23 yrs of being on wonderful Tibolone/Livial and at the ageof 71yrs, I suddenly noticed Iwas getting a slight watery blood smeared discharge each day with a very mild aching in my lower tummy. As we were on holiday I waited until the next week and then saw my GP. She referred me to our local hospital where a month ago after a hysteroscopy plus biopsy, then a pelvic MRI scan - an Endometrial Cancer was discovered in my uterus. What a shock that was I knew the risk of long term use of this type of HRT but never thought it could happen to me. Two weeks ago I had a total hysterectomy removing the uterus, tubes and ovaries. The gynacologist is reasonably convinced that the cancer was caused by the long term use of Tibolone/Livial but as I presented to him in the early stages, it didn't appear to have spread beyond the lining. He is looking towards a positive outcome. We are now just waiting for the pathology reports to confirm this. Just wanted everyone on this type of HRT be aware of any changes they may notice going on and see your doctor if something doesn't seem right. If all goes well and say, in 8 weeks time I am hoping to return to Tibolone as my consultant has said, "There is nothing left for it to harm and if this HRT makes you feel good I have no objections to you taking it". Amazing! Best wishes, LadyPink

3 likes, 7 replies

7 Replies

  • Rhino2015
    Rhino2015 LadyPink

    Posted

    Thank you for sharing this, sorry to read what you have been through.

    Hope all will go well from here on in. 

    Has you discussed what, if anything will they give you to help with any symptoms that may occur now you have had the procedures?

    Wishing you a speedy recovery and new happy self.

    Loui xx

    • LadyPink
      LadyPink Rhino2015

      Posted

      Hi Rhino2015, Thank you for your message relating to long-term use of Livial/Tibolone. It's been 5 months since my hysterectomy (which included removal of ovaries and fallopian tubes). It was suspected the cancer was caused through me taking Livial/Tibolone for too long - my decision I must add. I was on it for 23 yrs and I thought it was fantastic. I certainly have no regrets despite the cancer; it was my choice to stay on it for so long. I didn't have to have chemotherapy afterwards only radiotherapy which finished in mid-November. My recovery has been amazing thanks to key-hole surgery and now here we are almost into February and I'm feeling absolutely great; full of energy and back to normal. The downside of stopping the HRT 6 months ago has been the hot flushes - which at the age of 72 can be quite embarrassing. Both my hospital consultant and my GP have recommended I try a drug called Venlafaxine for this problem, but I am reluctant having read of the unpleasant side effects. This drug is used mainly as an anti-depressant - I don't suffer with depression - but has also shown it can greatly reduce menopausal sweats/flushes. Luckily for me though, in the last three weeks my sweats have lessened greatly. If things continue like this, then I shan't bother with any more pill taking.  I would certainly still recommend Livial in the short term for younger ladies than I, but for older ladies - according to my hospital gynaecologist, more ladies (65-70's) are presenting themselves with early signs of uterine cancer. Most have been taking Livial/Tibolone (long-term) which he said is quite significant.  Best wishes, LadyPink

    • angela6780
      angela6780 LadyPink

      Posted

      Hi there I'm from Australia. When to gynaecologist today, he has prescribed me livial 2.5 and vagifem 10mcg pessaries. Had my hysterectomy in 2012. Have had bladder, Lower back and stomach problems including, now constipation. I'm also in Benzodiazepine WD. Have been on them since the 90's. Doctor prescribed them for anxiety/panic. So since 2012 WD symptoms and now all these other problems. I'm scared to take the livial. I'm currently on 10mg Valium. I'm terrified. And mainly housebound. Pain and exhaustion. Hot flushes and sweats. But this can be from WD I'm 541/2 yrs old. My hormone tests keep telling me my hormone levels are ok? Please help.

  • Speedybeaver
    Speedybeaver LadyPink

    Posted

    Hi sorry to here what you have been through, but pleased your getting back to feeling well again.

    I have been taking Tibolone since I was 39 didn't have a lot of choice then as I had to have a full hysterectomy taking away my ovaries as well, I went in hospital not knowing what I had, I was in a lot of pain and losing a lot of blood with my monthly period, scans showed a lump, advised to have a full hysterectomy as I had my children.

    A few days after the op I was told I had Endometriosis, I am nearly 55 had no problems taking it, I did try and come off it 3 years ago, reason I thought I had been on it long enough and was told I should take it until I was 50, I tried to ween myself off, I did for a month after many months reduceding the tablets, but I felt so tired had no energy, and started going through the menopause with all the symptoms, hot flushes...

    I compete in triathlon and was struggling to do the training and my running was getting slower, I spoke to a different doctor and was adviced if my quality of life was better being on it to carry on until I was 60 then review.

    I do wonder if being on the Tibolone long term what effects it has in my body.

  • elsie23713
    elsie23713 LadyPink

    Posted

    Hi, like you I have been on Tibolone for several years, not as many as you though as I took other ones until after my menopause.  I think I have been on it for about 14 years now.  Recently, only twice in the last two months, I have noticed a brief show of what I can only describe as a pink/brown discharge when going to the toilet (no 2s that is), I am wondering after reading your story if I should also see my gp.  I am very glad to hear of your good outcome and wish you well.
    • LadyPink
      LadyPink elsie23713

      Posted

      Hi Elsie23713,

      It wouldn't hurt to speak to your doctor about that pink/brown discharge. Did you mean it was from you back passage? If so it could simply be something like haemorrhoids. The scant discharge I had was from the vagina. It was only tiny streaks of blood within the natural secretions but because I got it checked out straight away, the Endometrial Cancer found there was still in its early stages. So, if in doubt, please go and see a doctor but I'm sure all will be well. Love, LadyPink

    • elsie23713
      elsie23713 LadyPink

      Posted

      Hi again LadyPink, thank you for replying to me.  The discharge, though very brief, was from my vagina.  I have haemorrhoids but know when it is them bleeding.  The discharge only happened twice in the last four weeks, nothing since the last time, which is over a week ago.  It is very puzzling, I hate going to my doctor but have an appointment in a week's time anyway.  Other than the brief shows there is nothing abnormal.  I have reduced the Tibolone to one every other day anyway and feel ok on that for now.   I came off it slowly a few years ago but had to go back on it because of the way I felt.  I will have to see what happens next when I see my doctor.  Love Elsie.

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.