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[Violetta808]

Is anyone here taking Tibolone? How do you find it? Any hints and tips?

I’ve just been prescribed it at my hospital follow up because of bleeding on conventional HRT from some small submucosal fibroids (everything was biopsied and benign).

The consultant said Tibolone is a non-bleeding HRT alternative, though I have read that one of the common side effects is… you’ve guessed it… bleeding!

Should I take the full or half dose to start? (The reason is that, with hindsight, I’d definitely have eased into HRT on a 25 mcg oestrogen patch rather than the standard 50.)

I’ve been off HRT for six weeks (I was told to stop following the hysteroscopy investigations). Apart from the return of frequent headaches and some dryness creeping back (everywhere!) I still feel mostly ok.

I’m bit concerned about the androgenic effects of Tibolone as I’ve been prone to hormonal acne, but I could certainly do with a little more drive and energy.

Thank you all!

[suzysunday]

I took it for 18 months a few years ago.  It caused some bleeding which put me off, though they said I could have continued.  It gave me bad acne for a while.  It did improve libido but didn't really make me feel more energetic. 

[Violetta808]

Thanks Suzy. Did the acne settle while still on Tibolone or did you have to stop taking it for it to clear? It’s a miserable condition. Not something I still want to be worrying about in my mid 50s!

Interesting about the bleeding. So it’s definitely not quite the magic bullet for everyone.

I guess all I can do is try it and see how it goes.

[suzysunday]

Yes the acne did settle down while still taking it. I took for 18 months before the bleeding,  which stopped when I stopped the tibolone.   Generally it didn't make me feel as great as I'd hoped but we all react differently.   It's worth trying.  I don't know if I read it's only recommended for a year, not sure.

[Sooze]

Violeta808,
Here’s a link to my 2016 diary when I started it https://www.menopausematters.co.uk/forum/index.php/topic,33626.msg539296.html#msg539296
I came off it at the end of 2019 because it had stopped being as effectively for me. It was good while it worked, but there were some odd side effects and I’ve found Sandrena, Utrogestan plus testosterone much better for me.
HTH,
Sooze

[Violetta808]

Hi Sooze - thanks for the link. I'd not found that thread from searching the forum so that's really interesting reading. It sounds promising if not perfect (but then what is!)

I've not actually started the tibolone yet, because the prescription got lost between the hospital and pharmacy, or maybe they just forgot to send it - honestly, I can't even! However it's finally got through and I'm going to pick it up in the morning.

In the meantime, I've been sticking on 1/3 of an Everol Conti patch the last couple of weeks. I woke up with a headache (one of my more annoying post-meno symptoms) on my birthday and thought - sod this. I don't know if it's so low a dose as to be practically placebo, but it's not brought on any bleeding, and I managed to have a couple of glasses of wine at a work do last night, which would usually mean a headache, and felt fine this morning. Ideally I'd like to go up to a 25mcg dose and see what happens but I have a review in three months so should give the tibolone a go in the meantime.

So maybe there's something there to fall back on if the tibolone doesn't suit - but I'm going to try it.

[suzysunday]

I hope it works for you. 

[Violetta808]

Just an update as I’ve finished my first month of Tibolone.

To recap - I had a bumpy start with conventional HRT (Everol Conti then Everol + Utrogestan) all of which made me bleed a lot, hence investigations on 2-week pathway, and hysteroscopy, and discovery of fibroids, and gynaecologists giving conflicting advice, and all the associated stress and worry. I also realised (once I stopped) that I was feeling very bloated and water-retentive on it.

So I eventually had a follow-up appointment and the consultant suggested I try Tibolone.

I don’t want to jinx it, but so far so good. I’ve had no side effects at all, no bleeding, no boob-ache, nothing. At first I even wondered whether I’d been given a placebo sugar pill as I felt nothing different… except now the menopause headaches have gone, VA is well under control and I feel more normal and ‘myself’ than I have for a long time.

To be honest I was a little dubious about taking a synthetic steroid but it seems to suit me and has been so much more gentle than conventional HRT, and there's a lot to be said for the convenience of just having to swallow one tiny pill every morning.

Fingers crossed that Tibolone continues to work for me, and I hope this is a positive message to anyone else wondering about trying it.

[Northerngirl]

Thanks Violetta808 for the update. I've got to be honest I'd not heard of Tibolone until now. Is it still HRT?
I'm so glad it is working for you because I know you had a tough time with all the investigations etc the same as me.
I'm wondering if this is something I should maybe consider as I never seemed to be able to get my HRT right,even after  10 years of trying numerous types. I stopped all HRT in December and touch wood so far so good,I still have some symptoms.... but it's the VA that is starting to bother me now. I've got ovestin  but honestly I don't know what is safe to try anymore. I'm so anxious now about starting anything new....before my scare I'd have tried anything as long as the NHS said it was safe but now I'm so scared about my womb lining getting thick again and having to go through all that again.

[Violetta808]

Hi Northerngirl

The most useful short description of Tibolone I've found is from an Australian site (the NHS one is a bit basic and out of date).

Tibolone is a synthetic steroid which has oestrogenic, progestogenic and androgenic action. The drug is metabolised into three active metabolites, two of which bind solely to the oestrogen receptor, and a third which has affinity for the progesterone (preventing endometrial hyperplasia) and androgen receptors. The oestrogenic effects are exerted mainly in bone and vagina and are responsible for control of vasomotor symptoms and prevention of bone loss. In limiting the conversion of oestrone to oestradiol, tibolone may reduce the oestrogenic effects in breast tissue. Tibolone has androgenic effects in the brain and liver; both by reducing SHBG and by weak stimulation of the androgen receptor.

Note it actually prevents endometrial hyperplasia which is really useful if you have bleeding issues on conventional HRT or very twitchy fibroids like I do.

So is it the VA that is the main issue for you now? I'm not surprised you are anxious about taking HRT again after all the stress that consultant put your through with his needless catastrophising, and if you feel you don't need systemic HRT perhaps you'll be OK on just the topical treatment, but maybe you need the pessary too. I needed both and was using vagifem and ovestin for a couple of years and never had any bleeding problems – until I went on the patches. Also my elderly mum who'd had breast cancer was prescribed ovestin for her VA by a very enlightened GP (she died aged 94 and not of anything to do with breast cancer). So it's probably as safe as anything can be in this world...

It's definitely worth asking about Tibolone though. Personally I'm really glad I've tried it.

[Northerngirl]

Hi, thanks for your detailed reply....it's definitely something I'll look into. But like you said I think I'm maybe okay without systemic HRT....at this point anyway.
Think I'm going to have to stop being a wuss and start using ovestin.
I noticed on one of your earlier posts that you were suffering with "dryness everywhere " which is definitely an issue of mine, not  just VA it's everywhere. So I'm just wondering if the Tibolone has helped with that for you?
It's very difficult weighing all the pros and cons isn't it.
Thanks again Violetta808

[Violetta808]

Dry eyes, ugh! But that’s also due to age and years of wearing contact lenses. Also at menopause my gums started receding, when before it was never an issue. Don’t know if that’s linked but I’ve seen others’ posts about gums and teeth here and wondered. I think I meant I felt dried out generally too, ie achy joints and headaches. That’s definitely improved.

I would use the vagifem - when you’re ready! You could always insert it part of the way up so it’s not right next to your cervix and less likely to get inside. You’re not being a wuss though. You’ve had months of serious worry and it takes time to process all that.

[Violetta808]

I’ve been on tibolone for nearly four months and it’s going really well. I just had a follow up at the hospital (following hysteroscopy and biopsy earlier this year for post-meno bleeding) and have been discharged.

I was quite sceptical about taking tibolone at first as I’d read very differing opinions, but I’m thankfully one of the lucky ones. For me, it’s ‘just right’ and has made me feel normal again with no drama and no side effects – none of the bleeding and bloating from patches, or the spaced-out feeling I got from utrogestan.

I asked the consultant various questions about the safety of being on it long-term as it’s oral and a synthetic hormone. In his opinion I can take it as long as I want or need to, beyond the age of 60, and that clot/stroke risks were minimal.

While I don’t feel like I did five years ago, a lot of life has happened in that time and I wasn’t expecting to turn back the clock. However I do feel much more resilient and motivated to do positive things and look after myself. I wonder if my mood is better as a direct effect of the tibolone on my brain, or because it’s sorted out my physical symptoms, particularly the VA and frequent headaches, or a bit of both?

I realise on the menopause scale of no symptoms to absolutely awful I’ve had it relatively easy, but it was bad enough for me to seek treatment and join this forum when conventional HRT caused me new problems. Of course we are all unique in what works for us, but based on my experience, if anyone is considering trying tibolone and it’s medically safe to do so, I would encourage them to give it a go.

[bombsh3ll]

Thanks for sharing this! I'm glad it's helping you and it's always good to hear positive experiences.

I am on the combined pill presently but when the time comes to move onto menopause licenced therapy I am very interested in tibolone for myself.

I don't want the mess, faff, expense and unreliability of transdermal products, and a single pill providing estrogen, androgen and endometrial protection in one sounds fantastic.

[orrla]

I don't want the mess, faff, expense and unreliability of transdermal products, and a single pill providing estrogen, androgen and endometrial protection in one sounds fantastic.
[/quote]

What mess?!
..you take one sachet out of your fridge, tear top, take out, stick onto your chick, and done. For three or four days..
Where's a mess in it..?!