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[Joesmum]

Well I'm normally with the "no ovaries" girls on our "surgical menopause" thread but I thought I'd cast my net wide to see if anyone has wondrous things to say about Tibolone?

I am crossing all my fingers and toes...

Currently I'm on 50 mcgs of EVOREL and struggling to increase it to 75mcgs without terrible side effects including psychological ones. Not nice.

So this morning my endocrinologist suggested that I try Tibolone

I suggested trying Estrogel again but at a lower dosage ( like 2 pumps instead of 4) so as not to trigger the horrific anxiety that it caused previously but he said we should try the Tibolone first.

He's a fab endocrinologist and he's brilliant with my hypopituitary problems but I confess I'm worried.

Has anyone got any good news for me?

[Annie0710]

I'm a newbie to Tibolone, just started my 3rd month, hysterectomy saving ovaries 1999 but ovarian failure soon after but last year a scan couldn't find ovaries and the sonographer reported that she's convinced they've dissolved and gone.  I think my gp and gynae must've agreed too

So been on oestrogen only hrt and have struggled badly since 2012.  Like you I cannot tolerate any oestrogen above 50mcg comfortably

Pros I've noticed these 2 months :
Sexual response better
Hair more manageable
Better mood
Social anxiety a little improved
Bowels better

CONS:
weight gain (@5llb)
Sore vagina externally despite using Sylk and vagifem
Not getting to sleep easily so now I take one phernergan tablet every other night

There are some common settling in symptoms like jelly legs, dizziness etc but fortunately I didn't get them.  I had a hangover feeling each morning for the first 3 weeks

I'd always say it's worth trying.  I have always taken the whole 2.5mg tablet but if you're worried maybe break it in half and settle in that way.

There's Tibolone threads and Suzanne tells a very honest detailed journey on it, she's doing so well

X

[TallSarah]

Hi Joesmum,

I've have recently had TVH and BSO and am just starting on my hrt journey. Anyway I was put on tibolone and I managed 3 months but have had to stop.  Terrible mood and anxiety issues.  Was effective at controlling hot flushes though.  My case is complicated by endometriosis and have swapped to primque. Been on it for a few days - so far so good.  But by the look of things I think it might have been discontinued!

What I have learnt in my short hrt experience is that there are lots of types which affect individuals differently so might well but worth a try.  And tibolone is unique in its method of action.

[Peacegirl]

So sorry to read of your prolonged difficulty which I can totally relate to! Hope it gets better for you soon......  Look forward to hearing how the Tibolone works out for you as this may be my next one to try if the estrogel and utrogestan doesn't work out. x

[abbyH]

 I tried for a week and had to stop.. Bloating weight gain and just feel miserable..

I'm trying very hard to stay positive but I have had no joy in my journey since June 2016 to get on any kind of HRT regime
Thinking of going it without... using vagifem if I need to or something like that

very depressing - and no answers or help from any doc's they seem to all say well this is what happens just accept it

my hair has improved, but do I have to choose between being fat or bald?

Abby x

[abbyH]

I know, and I know others will tell me that, I just can't bear the feelings I am getting on ANY hormone regime it seems.. I blow up like a football and just feel wretched. My body is what I use to earn my living (I'm a yoga teacher) and not being to move around or feel energised is just awful, I feel like a ton of flab has been strapped to me and I'm being weighed down daily...

I think will just have to wait and see what the hospital advise, but I've been nearly a year without any real hormonal support ... I can't do another year like this!  I feel I will go bonkers and just give up... I 'm going to try without I think and see how that makes me feel.. what else can I do?

[Annie0710]

I'm sure lack of oestrogen causes the bloating and midriff too Abby, have a read in case I'm wrong x

[abbyH]

Yes I have thanks Joesmum and yes Annie I know that the bloating can be caused by low oestrogen..  I just don't know what to do, the patch seems to make things worse (when I was on higher levels I felt ten times worse) but maybe I should just persevere with raising it and see if that makes a difference to the bulge. I honestly am not eating anything that would make me put on weight this way.. I exercise all the time etc etc

Really really upset and frustrated

[Annie0710]

Low testosterone too causes that - you are caught between a rock and a hard place here Abby x

[abbyH]

Hi Annie, yes I feel really unsure.. I think maybe sticking with low patch (and T) and then trying to increase patch slowly before hospital appointment in April... I'm on a total detox and cutting out carbs and alcohol for a month to see if that makes a difference...

it's really like my body has been taken over by aliens!

 

[Annie0710]

I know that feeling ! I'm suffering with my ears/sinus and extreme tiredness has collared me this past week ! X

[abbyH]

Sending you a hug and lots of support. xxx

[Annie0710]

Same to you Abby - mwah x

[Hurdity]

Thanks for the update and sorry to hear the Tib didn't work out. Hope the gel does the trick and yes please let us know

Hurdity x

[Kathleen]

Hello Joesmum.

Sorry to read that Tibolone has not worked for you. I am trying it at the moment and although I don't feel good it's early days. I hope the gel helps you to feel better.

Wishing you well.

K.