I have been using Tibolone (Livial) for three years now....

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I have been using Tibolone (Livial) for three years now. I previously used HRT patches but due to the length of time I had been using my GP suggested that Tibolone would be better for me.

I have had previous hysterectomy and bowel resection due to Endeometriosis.

I am now 49 years of age and HRT started at approx 29 years old. I had one son at the age of 27 and had a miscarriage at age 29 when I was 5 months pregnant.

I have some concerns regarding Livial as I am currently experiencing -

Joint Pain

Severe Muscle Pain

Some Visual blurring

Fluid retention

Very low metabolism (despite trying very hard to motivate and move around as much as possible)

Require rest and sleep often

Unexplained weight gain or fluid retention ?

I have been attending my GP for the last 4 months back and forth with muscle and joint problems and also some swelling in the neck area.

Some blood tests have been done but at the moment nothing has been found. Apparently Thyroid results are normal.

A swelling ocurred on the lower right side of my neck around early February. I have not to date received a scan to diagnose the problem despite repeated visits to the practice and also visiting a private consultant in Murrayfield Edinburgh who wrote to the GP practive a number of weeks ago and who recomended that this should be done.

I was suspicious at first that I had a thyroid problem but the blood results do not show.

My concern therefore now is that Livial is causing my symptoms and I need to establish whether this is the cause or not and whether to continue with livial or not under the circumstances.

Visiting the web site has been of benefit to me in order that I can read current research on Livial as I am extremely concerned that I have gone from a fit well active person to the current pain and progressive problems I am now experiencing.

Regards.

Brenda Barclay

[i:5950a61a23]This message was automatically imported from the original Patient Experience[/i:5950a61a23]

3 likes, 104 replies

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  • Posted

    Im sorry to tell you that i also suffered thesame with livial. it gave neck pain, weight gain and HBP which im now taking drugs to bring it down. pls throw livial away now and see your GP
  • Posted

    I have been on Livial now for about 6 months - I am 56 and started taking it purely to help with my sex drive as it had vanished along with my periods!!! This site (and this particular discussion) is an eye opener - I assumed the aching limbs etc. were due to age - I now think not - off to my GP Monday and will ask to come off this (gradually I suppose) - my poor husband.................. Would be interested in an alternative but I will wait to see how menopause symptoms are - I didn't really suffer much before this HRT but did notice my mood/temper improved with Livial (although not my sex drive)
  • Posted

    I am at wits end, feel so low with mood swings/anxiety. I have had endometriosis for 22 years, which consequently resulted in a total abdominal hysterectomy 2 years ago. My consultant put me straight on tibolone, which he highly recommended because of history. I had lost 2.5 st, and initially felt great. After 5 months I started gaining weight, not sure all because of medication, but I also experienced hair growth, mood swings-I felt like a monster at times, they were extreme but also I was so anxious. I came off living and commenced fem 7 patch. I have been on them until march this year as they kept falling off and I was getting joint pain, tiredness, more weight gain and a lot of bowel aching ? Endometriosis growing back. I was put back on livial. At the moment I am waiti g to see my consultant this month, I feel a monster again, so stressed, I noticed above blurring vision, I feel so run down, tired- I also had a thyroid test which was normal, I have put on weight even though dieting have lost 5ib in 12 weeks! Not happy, I am at my wits end, I am ache andim so tired. I am 38 x
  • Posted

    Well since I last posted, I have been diagnosed with underactive Thyroid and am on medication for this - so I stopped using Livial (my doctor said just stop - no reducing slowly) I stopped about 2 weeks ago and notice no difference (good or bad) but I have a bit more energy (thanks to the thyroid meds I guess) - blood test in 2 weeks and see how things are then - I do have a horrible feeling all these things are related though......
  • Posted

    Ann bless you, it's not easy, keep me posted.
  • Posted

    OMG!I've stumbled on this by accident - I came on here to find out how I can come off livial, cos I've run out and keep forgetting to get new prescription lol!!

    But reading this has really made me sit up and think! I'm an ex PE teacher of 56, and for the last 7 months or so have been walking like a cripple.

    The bones in my feet are SO SO sore I can't stand for more than 30 minutes and walking round anywhere is a nightmare. My knees and backs of my legs are so painful (I've stopped going to the gym because of it), get the occasional blurry eye for no reason and have put on over a stone, despite being skinny for all my life.I've been to the GP and was told to put inner soles in my shoes!!

    Looking at this I am going to print it out and go back to my GP and see if I can come off it. This pain is unbearable and like others, I feel like I am 70 - its awful!! Thank you SO much for starting this!

  • Posted

    Hi Everyone - this is my first time of sharing my current experience and it's a consolation and reassuring to read these comments and realising I am not going la-la.

    I have been on decapeptyl injections for the last 2 months and my headaches were so bad, I was put onto livial. I've been on them a week and shocked with what I think are now their side effects - feeling like I am swelling up like a hot water bottle, the aches and pains particularly in the lower back and hip joints, swollen feet, dull aches in my legs and feeling pretty disorientated and times, as though I have vertigo.

    This is all supposed to be prep for my hysterectomy?

    I am becoming more and more conscious of what feels like the power in our health gives way to the power of the side effects of these synthetic substances that we take as drugs. It's obvious that my whole body is now suffering and feeling at odds with what it considers 'foreign' -how can I rein back a sense of feeling empowered again instead of feeling subserviant and at the mercy of these horrid and debilitating side effects?

    Any suggestions? .....

  • Posted

    Firstly, thank you to all of you who have posted on this forum. I thought I was literally going CRAZY.

    I am 53 and live in Australia, I've been on Livial for 5 years. I experienced severe numbness in my arms and legs, tingling in fingers and toes, completely numb hands, EXTREME tiredness (have to sit down to rest after sweeping the floor) dry mouth, stinging lips and tongue, aching joints and restless legs.

    My doctor did lots of tests then sent me to a neurologist who told me it was all in my head!! I was at my wits end.

    In desperation I stopped taking Livial and every single one of those symptoms dissapeared within 4 weeks. I feel like a new person. The hot flushes and panic feelings have returned, waking me 4 to 5 times every night, but I feel so much better during the day, I'm never going back on Livial.

    By the way, I asked my doctor at the beginning if any of these symptoms could be caused by Livial and she said "definitely not". I have printed these pages and will be dropping them off at her office tomorrow.

    Any suggestions to rid me of the hot flushes would be greatly appreciated.

  • Posted

    Hello everyone, my Name is Maria, and I am from Athens Greece , after reading all the comments today 8/12/12 ,I joined this site as to tell you that

    I HAVE ALL THE JOINT PAINS , SOME BLAIR VISION AND I AM SO -SO GLAD I READ ALL THIS =

    = NO MORE LIVIAL FOR ME

    My fingers , the joints on my arms ,hips and back side are unbelievable … I gained 3 kilos or I am swollen around my stomach and tummy = nothing feats and I am so tired all the time

    Thank you to Every one Reporting there Symptoms, and thank you to the Internet ( I realized some time ago that anyone can write lots of garbage on the Internet ) but today I am very thank full , because I hope after today the pains my weight and my moods will go back to normal

    I HOPE THERE IS SOMETHING ELSE OUT THERE WE CAN TRY IF ANYONE KNOW OF ANYTHING ELSE PLEASE DO INFORM US

    I will report to you my symptoms if I have any in the next few days or couple of weeks

    Thank you every one

    BR

    Maria

  • Posted

    I went off Livial because of a number of bad reactions and almost immediately the hot flushes and panic feelings returned with an absolute vengeance!! I was having a severe hot flush every hour throughout the night.

    I have had very good relief from hot flushes with Ethical Nutrients HOT FLUSH FIX.The ingredients in this product are Rehmannia glutinosa 3.1grams, Cornus officinalis 1.6grams, Chinese Yam 1.6grams, Phellodendron 1.5grams, Tree Peony 920mg, Poria 920mg, Water Plantain 920mg.

    The bottle said take 3 per day, but I started off with one per day. Within a week the hot flushes had reduced down to 2 per night. I now take one in the morning and one at night and I have not had a single hot flush since. They are not cheap ... $40 for 60 tablets here in Australia. But they are worth every cent.

    Kym

  • Posted

    Ladiies i just read this arickle

    There is already a combined pill containing half-dose oestrogen and progestogen for women who have not had hysterectomies.

    The new low-dose pill Premarin contains 0.3mg of oestrogen, less than half the standard HRT preparation of 0.625mg. The hormone combats symptoms such as hot flushes and night sweats.

    It also fights bone thinning which affects women after the menopause and can lead to osteoporosis and broken bones.

    Dr John Stevenson, consultant metabolic physician at the Royal Brompton Hospital in London, and

    chairman of the charity Women Health Concern, said: "This is good news for hundreds of thousands of women who have had a hysterectomy because until now there has not been a choice of low-dose HRT."

    Read more: [url=www.dailymail.co.uk/health/article-466805/At-low-dose-HRT-pill-effects.html#ixzz2ETwVBcly]www.dailymail.co.uk/health/article-466805/At-low-dose-HRT-pill-effects.html#ixzz2ETwVBcly[/url]

    www.drugs.com/premarin.html

    [url=www.medbroadcast.com/drug_info_details.asp?brand_name_id=942&next_page=y#Warnings]www.medbroadcast.com/drug_info_details.asp?brand_name_id=942&next_page=y#Warnings[/url]

  • Posted

    I have also been on livial for about 3 yrs. i have severe joint and muscle pain and weakness plus chronic fatigue., reduced vision, headaches, poor skin.
  • Posted

    I also am suffering with mood swings and brain fog. I am 54 and been an avid reader all my adult life but for the past 2/3 yrs i cant read a book as i cant remember what im reading. I feel confused much of the time and now feel depressed with all these symptoms. Most days i struggle to get out of bed as i feel 100 yrs old. Livial did help regain my sex drive though. I am so relieved i found this site as i never made the connection till now.
  • Posted

    I am not taking livial from tmro and i will report back whether hot flushes return and whether fibromyalgia reduces. I also supplement with one pump of oestrogen gel but will increase to 3 pumps to compensate livial withdrawal.

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