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Author Topic: Tibolone  (Read 4465 times)

cazjen44

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Tibolone
« on: September 22, 2018, 09:14:05 AM »

Nearly a year now since my old HRT Prempak C was discontinued 😪 and now my replacement HRT cyclo progynova has also been discontinued.  It wasn't as good by any means as Prempak C but I felt 70% better on it.  Now my gynaecologist has said try Tibolone.  I will start the first pack on Monday but I'm just looking for advice.  Is it any good?  I'm 48 and went through surgical menopause at age at age 31 and had ovaries removed due to endometriosis cysts.  Still have womb.  I loved Prempak C which I took for 16 years with no problem.  Since I've changed I've been plagued with light headedness which is worse when tired.  I wish Pfizer would start making Prempak C again 😑 any advice would be gratefully received x
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Annie0710

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Re: Tibolone
« Reply #1 on: September 22, 2018, 10:20:54 AM »

Always worth giving Tibolone a try as when it works, it really helps women but it's like anything that some will get on fine with it and some won't


I do really feel for you as I read so often how prempak was so well tolerated x
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Rosie63

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Re: Tibolone
« Reply #2 on: September 22, 2018, 03:20:28 PM »

Hi.  Yep, I was a Prempak C lady for several years and was gutted when they discontinued it.  I've tried several different hrt preparations and regimes over the last year, including Tibolone, but none have been a good replacement for me.   I did really want to find a bio identical one because I'm in my early 60s now but this week I've began taking Premarin as it's supposed to be similar to Prempak.  I'm taking Utrogestan alongside the Premarin.  This is only my 5th day so too early to tell if it's going to work but not feeling too bad at the moment.

I'd definitely give Tibolone a go because although it didn't work for me, everyone's different and it could well be the one for you.

Good luck and let us know how you get on.

Rosie63x
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suzysunday

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Re: Tibolone
« Reply #3 on: September 23, 2018, 12:16:42 PM »

I was on Tibolone for 18 months and though good for libido I got a lot of joint pain, fatigue and eye problems. 2 months ago I started bleeding and to go for horrible biopsy, which was inconclusive and they want to do another.  I've been of it since and too scared to take it again.  My joint pain and eyes are better but stuck with flushes and dryness.  I was 60 a few months ago and perhaps should have stopped but the gp didn't say I should.  Everyone is different but I would never have taken if I had done my research. 
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Ladybt28

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Re: Tibolone
« Reply #4 on: September 23, 2018, 01:34:29 PM »

SuzySunday don't beat yourself up - none of us know how we are going to react to different HRT and also things change over the months and the years.  What starts off good can go "t.ts up" 3 or 6 months down the line.  May not be Tiblone causing the bleeding generally, just an imbalance somewhere.  If the biopsy is inconclusive first off then maybe you are worrying that Tiblone has caused something sinister for nothing, not that I am disregarding how worried you are.  There are plenty of people who take it with no bother.  I cant take Everol and that has a good reputation.


And as for being 60 and stopping - its not a requirement unless the women wants to stop. research now shows that HRT is good for the heart and bone density - see me if I can get my balance right they are going to have to wrestle it away from my bony fingers in my nursing home!
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suzysunday

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Re: Tibolone
« Reply #5 on: September 23, 2018, 02:02:11 PM »

It's just that the bleeding stopped less than 24 hours after I stopped the Tibolone.  I understand what you say about hrt ok after 60, but I thought tibolone was different.  I have said I dont want another biopsy so the gynaecologist has reluctantly settled for another scan and if ok he MAY let me use ovestin locally but no other hrt.  I can't face the biopsy and worry about the possible internal damage.  He was so casual as though it was like having a blood test and also tried to persuade me to have it without GA .  I had the other with as I get really anxious and have not had children.  Waiting for the scan in a month. Got VA and just had cystitis and too scared for sex.  Really really fed up.  Just ordered some Yes lube.
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Hurdity

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Re: Tibolone
« Reply #6 on: September 24, 2018, 04:55:07 PM »

If there is nothing wrong with your uterus lining then surely it is OK for you to restart HRT of some sort? If Tibolone is the cause of bleeding then another HRT type might be better for you? Also you should be able to use local oestrogen whatever the outcome!!! There is no need for any progestogen to be taken with local oestrogen - and the doc should not make you suffer with VA like this!!! Is this a meno clinic?

Hurdity x
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suzysunday

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Re: Tibolone
« Reply #7 on: September 25, 2018, 10:03:05 AM »

It is a gynaecologist at my local hospital where I have had several appointments since VA diagnosed 2 years ago.  He said this because the inconclusive biopsy meant he could not 100% rule out cancer.  The scan and biopsy showed nothing bad, but some womb lining thickening in one area although most of lining thin from atrophy. Also a small fibroid than no one seems worried about.  I had to chase up hospital results as it was taking so long and was told over the phone.  Still waiting 5 weeks for the letter with the inconclusive results, which of course I want to see.  3 weeks till the next scan.
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cazjen44

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Re: Tibolone
« Reply #8 on: September 26, 2018, 05:14:59 PM »

Thanks for replying ladies.  I'm 4 days into taking Tibolone.  Got a really fuzzy head and light headed feeling but will persevere.  Feeling fed up tonight though.  Why is it so hard to find a replacement for prempak c  :'( x
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Annie0710

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Re: Tibolone
« Reply #9 on: September 26, 2018, 06:22:38 PM »

Cazjen have a good read on Tibolone using the search engine here as many reported fuzzy head in the early days but did settle for most of them x
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suzysunday

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Re: Tibolone
« Reply #10 on: September 26, 2018, 06:30:46 PM »

Hope the Tibolone suits you.
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cazjen44

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Re: Tibolone
« Reply #11 on: October 04, 2018, 07:11:21 PM »

I'm now 13 days into starting Tibolone.  Headaches..nauseaous and light headed and feeling thoroughly rotten.  Is it my body experiencing a dip in hormones ie oestrogen, I was on 2mg of oestrogen cyclo progynova (now discontinued) or is it side effects of new Tibolone and do i persevere or do I slap an oestrogen patch on to boost my oestrogen aswell as keep taking the new Tibolone?  I'm due to see new gynaecologist on 20th Nov.  GP useless and keeps banging on about mirena coil.  I'm fed up again.  These weird head sensations..headache and neck ache and tingling..are scaring me and not nice. 
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suzysunday

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Re: Tibolone
« Reply #12 on: October 04, 2018, 07:54:00 PM »

It seemed to take a long time for me to adjust to tibolone,  maybe 6 months.  I always felt tired on it, dizzy sometimes and aching joints. The acne was terrible.   It's hard to know what to do.
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cazjen44

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Re: Tibolone
« Reply #13 on: October 08, 2018, 11:59:25 AM »

I'm now off work.  I can't cope.  Head disturbance..tingling..headache..light headedness..they've all come back on Tibolone.  Tbh I feel depressed and could end it all.  Tried to get GP appointment but no appointments left today.  Wish gynaecologist appointment was sooner but still 6 weeks away.  48 years old and my life is miserable.
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suzysunday

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Re: Tibolone
« Reply #14 on: October 08, 2018, 01:36:12 PM »

Poor you, you sound wretched. Can you manage a short time with no hrt until you can get to see gp and maybe change to another hrt. Do you have to have it changed through the gynae.  Try and see your gp asap. Don't suffer in silence.
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