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

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  • Posted

    I have just returned demoralised from an appointment with my Consultant. In fact I have been left feeling almost fraudulent as my experience with severe joint pains, muscle aches since taking Livial do not seem to register with the Consultant as a possible side effect. I am 39 years old in 2004 after suffering since the age of about 13 with IBS I was finally diagnosed with endometriosis and started on a course of monthly Prostap injections. 6 months ago I started taking Livial as well to mitigate the menopausal systems. Your comments above reflect the predicament I now find myself. The constant joint pain most severe in my neck and hands is interfering with both my work and home life. Like yourslef thyroid problems were suspected by my GP but blood tests proved negative. I am currently pondering on the options open to me which is quite difficult when my symptoms are not recognised by my consultant.

    Best regards

    Debbie

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  • Posted

    I have been taking livial for five months due to having both ovaries removed Iam forty seven years old and this past month Ifeel seventy years the joint pain I am experiencing is getting worse it first started with mt hip now it has gone into my feet knees and hands Ihave experienced weight gain and swelling of my fingers I am going to my Gp it will be interesting what he has to say I thought it must be the hormone as I have never exoerienced anything like this before I feel so much better in reading other peoples effects of the drug as I thought it was just me experiencing this joint pain

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  • Posted

    I'm 51 years old and have been taking Livial for only three weeks but it feels like three months. I'm experiencing neck pain and pain in my head with visual blurring. I also have joint pain in my fingers and abdominal swelling. I have no energy at all although I have been on T3(triiodothyronine)for two and a half years for a Thyroid problem. I'm considering going off Livial asap but am awaiting an appointment this week with my Consulatant as he asked me to wait on Livial for a period of three weeks. I have been using patches before this and had continual bleeding on a daily basis so came off it after four exhausting months. I'm so thrilled to find this site and these comments as I was begining to worry about all sorts of illnesses thst I may have. I hope we all get something more suitable very soon, I'm thinking that the menopausal symptoms couldn't be worse than this! Margaret

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  • Posted

    Im so glad I saw this post I have been taking tibolone since December after a tah/bso in August. It was suggested I take something for my bones. I have felt so exhausted the last couple of months that I would fall asleep about 6.00 pm I just didnt feel myself at all, my hips would ache and also my vision has been really bad that Im was thinking I needed to go and get my eyes tested. I thought all of these problems were down to recovery from my hyst. I stopped taking tibolone just over a week ago after consultation with my GP and in this short time my energy levels have gone right up. my hot flushes and night sweats have returned but I can live with them.

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  • Posted

    I have been taking Livial for 8 months, I'm 49. Everything was fine to start with, but in the last month or so,I have been suffering from intense neck pain as well as headaches.I also have a monthly bleed which is painful. What I fail to understand is why am I still having hot flashes and palpitations at night?? Where are the benefits?? I wabt to come off it, but don't know whether to stop suddenly or gradually. Which s worse the side effects, or the symptoms??

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  • Posted

    I have been takingLivial since Nov 05 at first I was fine but the last tree months I have had various degrees of monthly blee. I have no hot flushes but my Fibromyalgia pain seems worse.I did'nt want to take any medication but the hot flushes were so bad I thought I would try now I really wish I had not I spoke to my GP this afternoon and he advised me to go in for an examination next week and a probable scan now I am besides myself with worry wish I had not gone down the HRT road. I was told that as I was 3 years postmeno not to expect any bleeding has anyone had these side effects. Yes and some headaches and mood swings sometimessad I feel like pulling my hair out.

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  • Posted

    Well, I have had Livial for 2 days - yes, 2 days!

    I feel awful!

    Totally listless, disorientated and weird!

    Going to GP later today and will go back on Evoril patches which suited me well apart from breat tenderness.

    I had hoped Livial would be good as doctors seem to rave about it.

    Good to have found you all.

    Jenny

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  • Posted

    Sorry I meant breast tenderness, not breat!:roll:

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  • Posted

    Interesting reading i have been on Livial for over 10 years and i have Me/fibromyalgia and sciatica and mytral valve problems. I have had a problem with my skin which i am not sure is the Livial? Anyone else having skin eruptions? I have come off the Livial a few times and yes the muscle pain decreases but as my flushes are every 20 mins day and night i had no option bar to go back on it. I cannot take progesteron type hrt.

    fi:roll:

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  • Posted

    If you go onto www.Livial.com and send e-mail to them - they will make contact with you and send information on Livial long term usage to your Dr - that is what i am doing as at the moment there are a few trials being ongoing - Livial is made with Petrol and its tested on rats.

    Contact Livial.com and tell you GP about the site so as he can register and check for himself, he will get more information and will understand what the words are actually saying.

    fi

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  • Posted

    I am 32 and had my fourth Prostap injection two weeks ago. I was prescribed Livial after being on the injection for five weeks as the hot flushes I was having were horrendous.

    I've been suffering with really bad pain in my right hip for the past two months (it started a week or so after starting Livial). I had an x-ray of my hip last week and it is thought that there are changes to the hip joint although I am waiting for the x-ray report to be forwarded to my GP to find out exactly - if anything - is wrong.

    I also have a pre-op assessment today prior to having surgery on my left shoulder - I need to have some of the bones shaved and 'stuff'! The shoulder has been a problem for over a year but the hip is a new problem. I am certain it is related to the Livial.

    Any suggestions apart from shooting me ('if you were a horse you'd have been shot by now!') as I feel like a 70 year old and I'm only 32!

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  • Posted

    I have only just come across this site and thank goodness for that! I have been taking Liviella for 3 weeks and am really suffering with water retention. My face resembles a football and appears to be retaining more water every day, my fingers and legs are suffering too - does anyone else have this problem? I have tried several HRT therapies non of which my body seems to like. Is there anything else out there? I am going through the menopause early which is why there are numerous HRT therapies out there which are not suitable for me (due to the high risk side effects). I am beginning to despair. Feel fat, ugly and very, very old. HELP someone please!
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  • Posted

    Just came across this web site and am glad I have. To be honest I did have joint problems before taking livial. Iam 46 and had to have total hysterectomy 3 years ago. I too feel so tired I'm sure I could sleep anywhere. My eyesight is also poor after having good eyesight in the past. Most worryingly I was diagnosed with a goiter and have continuous discomfort in my throat but as with everyone else the blood test come back normal. The problem is when I was put on premerin instead all I could do is cry and behaved like a banshee. I itched so badly too!!

    What on earth is there left to take though??

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  • Posted

    Hi just doing a google search and came across this site, im 38 and had a total hysterectomy 3 years ago, after coping for so long without HRT i decided to start taking 2.5 mg of tibolone daily at first i thought i was coming down with the flu , my legs, hips knees hurt so bad i thought i was gonna die, also my energy levels are so bad i think my husband thinks his wife is 90 not 38, i will have to return to the doctors on monday its ruining my life i just wanna sit round the house in my pjs and when i walk up the stairs its like mount everest.....HELP....

    Lea x

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