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[Fanu]

Hi everyone I'm new here and unsure how to navigate the forum. I posted a message a few days ago and got no replies. I recently started on tibolone and I'm desperate for some feedback. I've searched and read all the previous posts about that but they didn't really answer my question. I understand not that many women are on tibolone but it's kinda isolating. Should I post again or just wait?
I'm 50, late perimenopause and probably in peri for at least 7 years. I'm not able to take oestrogen due to a medical condition. My hot flushes are very debilitating and frequent. I only know one person in real life who's going through menopause (my neighbour) and she's on HRT like almost everyone else.
My partner and I have been doing sex therapy, just reached the point where we're allowed to do sexual things again (no intercourse yet) and by coincidence this has coincided with me starting tibolone! So I'd love to talk to someone about that. It's a very weird experience....

[Taz2]

Hi fanu. I'm so sorry your first post was missed. I've copied the link to your first post here as it gives more information. https://www.menopausematters.co.uk/forum/index.php/topic,72722.msg977717.html#msg977717.

I can't give many answers to your questions but wonder who prescribed tibolone as it's usually for post menopausal women. I believe that it is good at preventing hot flushes though. HRT in tablet form does take longer to work than transdermal HRT so it's early days for you yet. It is also supposed to be good at helping with libido so fingers crossed for you!  I'm sure others will be along soon to offer help and advice.

Taz x 

[bombsh3ll]

Tibolone is a really useful treatment in my opinion, whilst I have not used it myself as I am not postmenopausal I have seen multiple women thrive on it after not getting on with bog standard HRT.

However I am concerned that you say you cannot take estrogen due to a medical condition - tibolone is an estrogenic compound and if someone has a genuine contraindication to estrogen, tibolone is generally contraindicated similarly.

It is usually favoured by those who don't tolerate progesterone or progestins.

Another benefit of tibolone is the androgenic component - this can help with libido and mood without needing to take a separate androgen replacement product.

[CLKD]

Sorry that your initial thread was missed. 

Browse round.  Make notes. Ask away .......... 

[Violetta808]

Hi Fanu. I’ve been on tibolone for just over a year and it works extremely well for me. I’m post menopausal.

I can’t advise about hot flushes I’m afraid, as these were actually the least of my problems - I only had occasional ones during peri. Post-meno the flushes stopped but I was left with low mood and motivation, frequent headaches, loss of muscle strength, joint pain, loss of libido and vaginal/vulval atrophy.

I tried conventional HRT but had side effects. So to cut a long story short I ended up on tibolone.

For me personally, it feels like quite a gentle treatment. The effects are subtle but significant (but just right for me). The headaches stopped within a week or two but the other effects took longer to kick in - so I would give it a bit more time.

I haven’t been magically returned to my pre-meno state - menopause has changed me physically and mentally, but tibolone has certainly helped to give me the motivation to put in the work to improve things.

I read your other post and see you have hereditary angioedema (which I had to Google) but I found a link that cites Tibolone being trialled as a treatment for it in women aged 25-58 - who knew! https://pubmed.ncbi.nlm.nih.gov/17223985/

[Dandelion]

Hi everyone I'm new here and unsure how to navigate the forum. I posted a message a few days ago and got no replies. I recently started on tibolone and I'm desperate for some feedback. I've searched and read all the previous posts about that but they didn't really answer my question. I understand not that many women are on tibolone but it's kinda isolating. Should I post again or just wait?
I'm 50, late perimenopause and probably in peri for at least 7 years. I'm not able to take oestrogen due to a medical condition. My hot flushes are very debilitating and frequent. I only know one person in real life who's going through menopause (my neighbour) and she's on HRT like almost everyone else.
My partner and I have been doing sex therapy, just reached the point where we're allowed to do sexual things again (no intercourse yet) and by coincidence this has coincided with me starting tibolone! So I'd love to talk to someone about that. It's a very weird experience....

Hello
I had to look up tibolone, and found it to be a synthetic medication used in HRT.
I don't know why doctors are still prescribing synthetics when there are body identical hormones available, which, only, in very rare cases can they not be prescribed.
There is a lot of out-of-date information out there, even among Drs.
They say you can't have normal oestradiol yet they prescribe you tibolone which carries a small cancer risk, whereas the others carry none. Here's a link I found when looking it up.
https://www.instagram.com/p/DFruTlBO27t/?hl=en
Drs do get it wrong sometimes, my own GP prescribed me Femoston Conti and I was in peri at the time, so I swapped it for femoston sequi, but that didn't suit me. That's a synthetic as well.
To be fair to my Dr, back in 2014 when she gave me it, Dr's were under the misguidence from the WHI study with flawed data, the one that scared half the UK women into coming off HRT.
I went back and asked for body identical, oestradiol gel or patch, micronised progesterone if you have your womb and maybe consider if testosterone would benefit you.
Society is in a funny place with menopause treatment at the moment, we are slowly going through changes. The next generation will feel sorry for us, we what we know will be more mainstream then.

[bombsh3ll]

The thing is everyone is different and some women do respond better to synthetic analogues, which are really very safe and the difference in risk of any negative outcome is clinically absolutely minuscule. Breast cancer risk in fact appears lower with tibolone than continuous combined HRT.

Many women don't get on with even their own progesterone for example, I am one of those who fares much better on a synthetic progestin to shut my own cycle down and prevent the release of endogenous progesterone. I am extremely happy and stable on my combined pill.

What concerns me about the promotion of "body identical" hormones as universally best for all is that it fails to recognise that people's individual needs and physiology are different, and can end up diminishing choice, which is not a good thing, and making women feel bad about using, or avoid trying at all, a product that could really improve their health and quality of life.

[Fanu]

Hi everyone and thank you for all the replies! I'm not sure how to reply individually.

So it's complicated but because I have hereditary angioedema I can't use oestrogen. I don't really understand the science, but tibolone seems to be selective in how the oestrogen part is expressed in the body, so it's ok for my condition and as one commenter said, has actually been used as a treatment for it directly. The doctor who prescribed is an endocrinologist, I was referred to her to find something I can take that won't bother the HAE. That's why I can get it even though I'm not post menopause. I think the only concern is bleeding and that doesn't bother me in the slightest.

Anyway I'm at 2 weeks now and although the hot flushes are still going strong, it's doing MAGICAL things for my GSM! I used Ovestin for 3 years on and off (it bothers my HAE) and never had anything like this result. I have actual wetness which seems like a freaking miracle! My libido has also gone through the roof.

Tibolone is actually an anabolic steroid and these drugs are effective for hereditary angioedema. I used to take a different one years ago and felt very well on it. I don't have any risk factors for stroke so I'm not worried about that too much. The absolute risk is very small. My mother died of breast cancer but the endocrinologist said it was ok risk-wise as she didn't have a hormone mediated tumour (it was triple negative, and she was elderly).

Anyway back to the point, my main concern is hot flushes so I really hope things improve on that front! I've read descriptions of women in surgical menopause having less flushes than I'm having via natural menopause.

[Fanu]

Was also going to say that I tried utrogestan - on its own - and it made me very anxious.

For flushes I have tried clonidine (stomach agony), oxybutinin (severe dry eyes) and the new drug for flushes Fezoah (stomach agony again). I take pregabalin already with no effect on flushes. I have chronic gastritis so a lot of drugs aggravate my stomach. Tibolone has been fine in that regard so I'm very relieved. I'm having no increase in anxiety but some spikes in energy. I don't like SSRIs or SSNIs (or whatever they're called). Most of them upset my stomach majorly and I don't like and won't accept the sexual side effects. So tibolone really is my last hope!