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[pastie supper]

What an awful year of trying this and that because I couldn't get tibolone!

I've read other posts saying it's not as good for bones or cardio health.
I'd like to refute that idea, not because I know, but because I believe the clinical studies, few as they are. The science seems to be in favour of tibolone being at least as good as HRT for those two or cancer.

It's a new thread so noone on the spot, but if you usually say tibolone lacks something, what do you think it is?

I know it's banned in the USA and Canada, apparently because of the risk athletes will use it. Typical for women to have a very effective medicine withdrawn from them, so a young healthy predominantly male group can run races how they want to.

[Ceebee]

Interesting. I have a postmeno Spanish friend who has just been prescribed Tibolone and Lenzetto spray (N B no progesterone although she has a womb) and she is very happy so far. Is this all you are taking?

[Penguin]

If you take tibilone, does it mean you don't have to take the dreaded progrsterone?

[Ceebee]

If you take tibilone, does it mean you don't have to take the dreaded progrsterone?

I've just read this in an academic paper in the National Library of Medicine online: " Tibolone is a synthetic prohormone with weak estrogenic, progestinic, and androgenic actions. It does not stimulate the endometrium so additional progestins are not required."

Evidently it is a synthetic steroid..hence the US ban. I've just given up hrt due to probable progesterone intolerance so might ask my GP about this.

[AngelaH]

I would like to try it, but I am not 100% sure I am postmeno.

[Kathleen]

Hello ladies.

I tried Tibolone back in the day and then went back on to Oestrogel but I can't remember why unfortunately. As I recall the androgenic effects were quite strong for me but I was very post meno so that may explain it. A friend of mine who was also post meno was persuaded to come off Tibolone because it was a tablet and not transdermal.
At this time of our lives I think if something helps, stick with it!
Take care ladies.

K.

[suzysunday]

Tibolone caused post menopause bleeding for me and some womb lining thickening.

[pastie supper]

Interesting. I have a postmeno Spanish friend who has just been prescribed Tibolone and Lenzetto spray (N B no progesterone although she has a womb) and she is very happy so far. Is this all you are taking?

Oh my, so women in Spain are allowed to add an oestrogen but it's not allowed for women in the UK? I imaging my womb has the same risks wherever I live so this is very reassuring as I've been taking a pump of oestrogel every second day because my hot flushes are coming back now it's been two weeks since I was supposed to go from three pumps to none overnight! I found that difficult.

How much Lenzetto is your friend prescribed, Ceebee?

I asked the gynae at the HRT clinic if I could have oestrogel or lenzetto with tibolone and it was an immediate and definite no.
She didn't explain, but she couldn't seem to explain anything that was going on.

Anyway, tibolone is great for my mood, 14 days now and I feel really light and contented, the absolute opposite of feeling suicidal by day 3 or 4 on a progestin.

I've been reading and tibolone is a progestin according to wikipedia!!!

So why can't it be used as a progestin as the friend of ceebee in Spain is doing?

Why do I get told I can't have any oestrogen at all, not a drop except vagifem, when my lining was checked as smooth and thin and never has had so much as a polyp? I think they are making it up as they go along again and lying about it all again.

I don't think I can ever trust my GP again. For 13 months she told me I couldn't be prescribed oestrogel by a GP, she directly lied and said she didn't know how my friend got it from her GP because it's not allowed to be prescribed without a specialist. She was adamant on several phonecalls that she couldn't prescribe it by law, then after the specialist told me any GP can prescribe it, my GP changed her story and said they can't be sure a woman will take the progestin if it's not a combined product, that was the real reason why I was refused it for 13 months, she told me.

I find the attitudes towards HRT shocking. They treat it like it's a very dangerous medicine that doesn't do any good because menopause is natural, go away and deal with it. But lying repeatedly about it will take me longer to forget. Why on earth didn't she tell me the truth? Why not explain the rules regarding progestins to me? She could have said it is necessary to prevent cancer or something similar and let me have the facts, so I can decide if I could take the progestin or not.

As it is, I got to try it in the end, but the fight has been knocked out of me. I've never had to fight so long and so hard for a medicine that will help without making me suicidal. It's like a switch in my head, progestins flick that switch and suddenly the realisation that life shouldn't be lived sinks into me and I start planning my ending.

It's happened so reliably I could almost set a clock by it. So now when the feeling comes on me I know it's the meds and I tell myself to hang in there until it's over. But the twelve days was never the end of it, I'd feel awful for another week or more, meaning most of my life was dominated by the progestin crushing my self worth into nothing.

I asked the GP if I could try tridestra because that only has the progestin part once in three months, she said no, that isn't enough progestin and she couldn't stand over that. I asked the HRT clinic the same question, they said no, I'd probably bleed in between times if I took that. I'm not sure why that prevented me from trying it, but as always it's their decision, not mine.

The HRT clinic were supposed to help me find something tolerable, they gave me oestrogel & utrogestan then discharged me without seeing if it worked or was tolerable. I tried utrogestan all three ROAs. After taking it orally I had the worst heartburn of my life, I nearly took myself to A&E thinking I was having a heart attack, it was agony. So I tried it vaginally and I got local irritation that drove me nuts with the itchy burning feeling, no amount of vagifem could calm that. So I tried it rectally, but that only lasted until I ran out of applicators, lol, they won't give a full box of applicators, you have to wash and reuse them, so that was rectally abandoned as well.
Even rectally it caused irritation and my mood was not good either but not quite suicidal most of the time.

Their method of finding a suitable progestin ought to be based on what I haven't tolerated so far, can't they work it out? There are dozens or perhaps hundreds of them and apparently I must try each and every one, see how suicidal I get, then report back and be told to repeat for 3 months to be sure I really feel suicidal before trying the next one. How very scientific of them (irony). It's unbelievably cruel and I bet no man would be asked to endure feeling suicidal on repeat like that.

Norethisterone wasn't as bad as MPA, is anything as bad as MPA? It imitates influenza so accurately my husband thought I was ill for real, I couldn't get up or go to work from the physical flooring it gave me. Cyclogest was bad too, but taken rectally it didn't have me bedridden, just suicidal by day three, by day five I stopped as it was getting so bad I was scared I'd do something to hurt myself. My GP gets quite cross with my non compliance, I was supposed to take it 12 days and only managed 5 before I was afraid it would make me kill myself. I was told that didn't even count as a trial! They have no appreciation of what it's like to try to live a normal life while being flung into the suicidal state every month, it's not as if I've nothing going on in my life, with progestins it's not a life.

I don't want to keep flicking on the suicide switch. Firstly it's horrible to live through, secondly I might actually kill myself if we repeat it enough times.

None of the doctors will take that seriously at all. I've been on prozac since I started menopause, anxiety was my first noticeable symptom. My GP was the worst at lying about what she gave me to take. Told me there was no progesterone in Evorel Conti, then when I reacted to it, I looked it up, found out she'd lied again, phoned her to say there is progesterone in this. She said it's bioidentical, so it's not possible for you to react to it. She was convinced, but completely wrong, it contains norethisterone and ironically tibolone is a derivative of norethisterone, but I can't use it as the progestin.

So I'm on tibolone and vagifem of a generic brand and I'm not supposed to use any of the oestrogel I have left over, but I'm having to line the bed with towels again and all my fans are back in use, I'm drenched every night otherwise and I get so cold getting up to pee when I'm in a wet nightie that I jump on my husband getting back in and shiver so violently that he wakes and holds me, but he says he's glad he can help warm me up again so I can keep doing it.

The most shocking part of all this HRT debacle is how completely unhelpful all the medics are. It's not a problem for them because menopause won't kill me, not quickly anyway, so they just want me to go, take my painful, sweaty, progestin intolerant body away and go deal with it by myself. Really that is the most consistent message - go away, it's not even an illness!

At least I'm allowed black cohosh and red clover, the GP said that. The former helps me, the latter did nothing.

I hope tibolone starts working better soon. It took a couple of months last time before I was happy with it and I told the gynae that tibolone had not one bad side effect in the eight months I took it except for having periods (which was the reason they stopped allowing me tibolone until I was scanned). It's been 9 months since then and I'm so relieved to feel normal again now I'm back on it.

When I was on oestrogel, I didn't feel that good, I was up and down a bit even before poisoning myself with progestins. I felt it needed something more, like tibolone, now I feel normal, but I need some more oestrogen too, if I'm ever going to stop sweating all night long.

I wonder is there a UK rule about not using tibolone as the progestin to take alongside lenzetto, or is that not true and I'm being lied to again?

[Allana1133]

Hi I’m allana can I ask a question to livial users please. Iv tried this twice. First was full tablet and after 3 days tummy pain. Nxt was half a tablet per day and felt amazing. Best Iv ever felt in 8 years but can  not sleep at all. No matter what I do. Was up 2 full days with no sleep and wasn’t tired. I can’t carry on as i work and still got teenagers at home. Any suggestions? Thought maybe estrogen not enough in half a tablet. Many thanks allana. X

[Claudia]

Hi dears, this is Claudia and i live in Brazil. My experience with tibolone was good i general, i've had it for 5 years. In my case it dindnt help much with sleep and body pains, diagnosed as fibromyalgia. I had some extra hair growth, acne and dermititis in my head and ears (!). Appart from that, no night swets, felt quite energetic and with such great libido. But i've never understood what was really tibolone in comparison to other hrt. Hence asked to try the other types thinking i would be missing anything and that the side effects i mentioned would just disapear. Well it has been a 5 months journey i've tried other types of hrt but with much worse side effects. I soon realized i was also intolerant to progesterone. So i am having it vagianly and transdermal oestrogen. I sleep like a baby now, but feel super bloated, fat even, have been having bleading for 2 months now and started to have some burning in my legs and viricose increased. I dont know what to do. I am almost going back to tibolone and simply accepting i shall need something extra to control my insomnia.overall, i was more anxious while having tibolone, but i think i felt better. Loved to read your experiences here. I feel less lonely in my journey. Wish me luck!

[Ceebee]

Pastiesupper, you asked re my Spanish friend "How much Lenzetto is your friend prescribed, Ceebee?"
She's in her late 50s and has just started hrt on one Lenzetto spray a day and one 2,5 mg tibolone tablet.

I agree totally about the woeful and conflicting knowledge our medics give in this country about hrt but I assume they are also indoctrinated and hand-tied by NICE and the MHRA; but there does seem to be this obsession with progesterone in the UK altho this is what causes us the most problems. Ironically, I read so many stories of ladies on combined therapy who, in spite of taking the much vaunted "body identical" utrogestan or other progesterone, are still getting thickened womb linings...

The other point is that my Spanish friend first had her hormone levels measured before she got her prescription and is having them monitored on a regular basis. Wow! What a sensible idea!!!
Personally I've just given up hrt due to my "progesterone intolerance" according to my GP. (Utrogestan is clearly not "identical" to MY body..) Perhaps I should just move to Spain!

[pastie supper]

Thanks for the responses, there were some I didn't see before.

Allana, I get stomach upset too with tibolone, that is the only side effect for me that I don't like.
It's into the fifth week on tibolone now and it's relentless. BUT, I took tibolone for 8 months a year ago and it wasn't a problem then, so I'm hoping it will settle.
I got a 4 day sample pack of natural wind reducer capsules this morning, I think it's mostly charcoal, but I've had success with charcoal before and these have added herbs like fennel, marshmallow and two others I can't remember.
So far so good, my pain has gone and we'll see how I am when I eat, I only eat once a day because it's always painful for me, I have another condition where I get paralysis in the mid section of my gut and I've no idea what triggers it, so it's pretty bad.
Utrogestan utterly floored me with stomach pains, I thought I was having a heart attack it was so bad, tibolone is a grumble in the background and a sicky feeling by comparison.

Claudia, I'm sorry you're having trouble with it too, there seems to be a problem with them all and we must pick the least worst for ourselves. I spent many months in 2021 and 2023, trying oestrogen & progesterone HRTs and the side effects are huge from them all compared to tibolone. Like you I wondered was I missing out on something to make me well, but it wasn't good.
I had bloating, sweating, mood swings, insomnia, fatigue, anxiety, low libido and more on O&P type HRT.
It took 3-4 weeks but tibolone has reduced or eliminated them all except this stomach pain.
I definitely wish you the best of luck going forwards.

Ceebee, I had some oestrogel left so I was using one pump occasionally when I was missing it to sort of wean myself of it, I missed it at first. Now I don't miss the oestrogel any more. I have it if I start sweating randomly, one pump seems to stop it. I'm not worried about too much uterine build up because I have post menopausal periods when I take tibolone. I had a five day bleed at three weeks in and last time on tibolone they fell into the pattern of five days on, 3-4 weeks off and repeat. It's as regular as my periods were in my 40s.
The mysterious thing is I'm three years post meno, age 54 and tibolone tablets are all the same. The gynae doesn't know why I get a cycle.

AngelaH, the tibolone/Livial leaflet says it's only for postmenopausal women, but so do all the HRT leaflets. It also gives instructions for contraceptives and what to do if you get pregnant while on it. So I would say it gets prescribed to perimenopausal women off label same as all the HRTs are (and I wish I'd known we could get it before the period free year, I was late to the game).

I really came back here to update how I feel about tibolone in the fifth week since starting it at the higher dose of 2.5mg, someone mentioned about it feeling too strong for them, the other dose is 1.25mg and might be worth a try.

For me this dose feels similar to two pumps oestrogel but without the drama. I don't know what it is, but even oestrogel has me on an emotional roller coaster at times. While I found the oestrogen only days were great, the progesterone days were doubly awful, with progesterone induced suicidal planning combined with the oestrogel or Estradot having no effect at all, so the menopause symptoms were all back.
I'm definitely staying on tibolone long term, even if the stomach problems are a continuing side effect it makes me feel much better overall, more confident, stronger, less emotional somehow and the towels I line the bed with aren't soaking wet any more!

[Claudia]

If you take tibilone, does it mean you don't have to take the dreaded progrsterone?

No, dear, you don't have to add any other hormone to tibolone.

[pastie supper]

I think I'll make a huge fuss if they try to take this med away from me again this year!

Here's my tibolone update after 5 weeks; It's great, I love it, I feel like myself again. All that anxiety and self doubt gone, seriously, it's made me feel younger and more confident. I look no different at all. I've heard rumours that it's almost like taking testosterone (yes), therefore you'll get chin hair (no) or acne (no). The tummy upsets have been continuing so my next script will include famotidine which might help. Ranitidine isn't made any more, it was the only one agreed with me, so fingers crossed famotidine will be as similar as they say.

During the day I'm staying dry and not sweating, basically no hot flashes on tibolone.
The notable thing is it does nothing bad to my mood at all. I feel great. Progestins floor me, I can't function with them at all, but even the oestrogen part on it's own which I had for 18 days a month were a lot of up and down, "is it working today or not" was always in doubt and I would feel relief when I put on the gel, I could feel it newly applied and I could feel it wearing off.
VA symptoms were a little better on oestrogel, now far better on tibolone. The irritation is going away, slowly but surely it is improving daily and sex no longer leaves me with irritation the next day. This might be due to getting the branded vagifem for the first time instead of generic ones, both were started together.
Last night I stayed dryish, the night before I drenched all four towels below and the duvet above me, all needed changed, but, I spoke to the pharmacist and at long last my blood pressure is now treatable!

This has been a saga every bit as infuriating as the HRT controls on who can get treated and who gets refused.

It's perhaps tibolone tipping my BP over the limit, last year it was 148/96 on a 24hour average. Even though it spikes over 200/100 all the time, that is irrelevant (surprisingly to me) and likely why I get such high readings in the clinic (and at home), it's only the average matters and that includes sleep time. For a whole two years I wasn't eligible for anything to lower it (it must average at least 150/100 before NHS will consider any treatment).
I disagreed and I challenge them, but they don't budge an inch and frustratingly I was disallowed HRT for many months for the sole reason that BP has to be lower than 140/90 or controlled by meds that I wasn't eligible for as mine wasn't high enough to treat...we all know the NHS is broken. My nurse friend told me last week even private appointments have a three months wait because the problem is we only have half the doctors we need and the gov keeps finding new ways to get them to leave the country.

Anyway, I spoke to the pharmacist for our GPs this morning and I'm finally getting Ramipril. It's an odd one because I've only to take it when I'm well. If I've a raised temperature or stomach upset I've to stop it until I feel better.
I asked the pharmacist would that not cause rebound hypertension if you stop and start all the time, he said it was more important to protect my kidneys if I might get dehydrated. I often get pain in my kidneys so I'll go with the advice.

I wonder how much sweat soaks four towels and a duvet? Only a couple of glasses full I expect, if I imagine that in a spray bottle it would soak well enough, besides I drink herbal tea all day long, two glasses is nothing.

[Nas]

Try looking for posts under the user Meno Mel?  She was a user of tibolone and had much to share regarding this particular product. In fact her experiences were very simulate to yours in many ways.