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[suzysues]

Hi it seems that I only come here when something is going wrong & I meant to come in & share the good news! I was lucky & sailed through my meno & out the other side with hardly any trouble. But then after my periods stopped I started to get vaginal dryness, so was put on Vagifem, this helped, but my doctor didn't like prescribing it & gave me a bad time every time I went back. Than I started to lose my libido & I thought my life had ended! I read up on here & the net & then saw a newspaper clipping about Tibolone, so I asked my doctor about it & she was happy to put me on it! It took a little while but gradually I began to feel better & after about 6 months I really felt like I had got "me" back!    I gained some weight and have about 1/2 stone that won't go no matter what I do, but I can live with that. All  is rosey in the garden for a couple of years

About 6 months ago I was walking my dogs, when my eyesight started going a bit fuzzy, by the time I got home I had a full on kaleidoscope going on & realised I was experiencing my very first migraine aura. My daughter has suffered with migraines for years, so told me what to do if it happened again. It has since happened about every 3-6 weeks since then. But I know what it is now so take a couple of painkillers & lay in a dark room & it goes. I got one yesterday & hubby comes home from work & finds me laying on the sofa & insists I see the doctor. I didn't wan to go, but did it for him. So we go through the symptoms ect & she asks if I have ever had them before in my life & I say now. So she says "can you do me a favour & come off the HRT" She says you don't suddenly get this in your 50's, so the HRT is causing it & it can lead to a stroke!!!!! I am in shock!!!!    And I beg her is there another way? She takes my blood pressure & I tell her how healthy & fit I am & try to backtrack, so she gives me some leaflets about migraine and a month to think about it.

I have been thinking about it all day & feel like I have gone back 2 years, trying to remember how horrible it was back then. But I am also scared of having a stroke. I am not sure if I am brave enough to wait a month, but don't want to go back to being a dried up old prune again. I can't think about anything else. I am a fit healthy lady & I might be killing myself.    I keep thinking of the positives of coming off it, losing that 1/2 stone, not putting bad stuff in my body ect, but I also think what's the point of being fit & healthy if I can't have sex ever again! 

[panthers]

Years ago I had to come off the pill because of migraines but have been fine on HRT.   Are migraines a side affect of tibolone and if so would you be able to take something else?

[suzysues]

This is something I need to discuss with my doc, in a month (If I wait that long) But I didn't need HRT except for libido so am reluctant to take it unless it can help that. 

[Hurdity]

Hi suzysues - sorry to hear about the migraines.
The only other hormone given for low libido is tesosterone and this is prescribed off licence to those with a womb mostly by private doctors and sometimes also at NHS meno clinics. Usually as part of HRT including oestrogen - maybe something to look into. There is some info on this site about it but you would be most likely to need a referral to a meno-clinic which your doc should do (insist!) since you have been advised to come off the tibolone.  Many women are on this along with other bioidentical HRt which is what the private specialists would prescribe ( estradiol patches or gel combined with natural progesterone - usually utrogestan).
It sounds as though you definitley need specialists advice - esepcially as your doc as mentioned stroke due to migraines.
There is lots of info on this site
Here's the info on Testosterone:http://www.menopausematters.co.uk/testosterone.php
All the other HRt preparations can be found on the green menu to the left.
In the meantime insist on the vagifem - your doc is out of order not prescribing it for vaginal dryness - it won't help with the libido but at least will keep your tissues healthy!
Hope this helps
x

[Lovely]

Suzysues - i have had migrainy headaches since I went on the pill in my teens - my dad gets them. They are a bit much but rarely as bad as some people get them

But are you in pain? It sounds like you are - but I did get ocular migraine for the very first time in my 40s - long before I went on HRT.  its a weird "kaleidoscope" sensation but not painful.

Just thought useful to know things can change or appear for the first time with or without hormones....

Very interested in the libido issue. The HRT I'm taking - oestrogel - seems to help me. The progesterone part doesn't! But that was always the way with PMT

And hello Hurdity!

[suzysues]

Thank you for your reply s ladies. I have talked to my doctor about the testosterone implant before, but wasn't sure if I wanted to go down that route.  She did prescribe Vagifem, but obviously she thinks its bad for me, so was not very reassuring lol

Lovely: It sounds like the same thing this ocular migraine. But I have never had it before. When I went on the pill in my 20's I got really bad head aches & put on a lot of weight so came off it after about 18 months. This confirmed to the doctor that the hormones are the cause. I've not tried any other HRT as I didn't really have any other symptoms & was very anti lol I will ask my doctor about oestrogel, but I assume if it has the same hormone, it will cause the same problems.

I am trying to go back armed with as much info as possible, but one interesting fact I found was this

"Lower levels of oestrogen may also increase a woman's risk of heart disease, stroke, and osteoporosis and fractures"

So it seems we walk a fine line to get it right! 

[jax]

my gp told me when I was nervous of HRT...breast cancer etc that If we dont take it we are more susceptible to bowel cancer, osteoporosis and VA/prolapse so its devil or deep blue sea and I voted for quality of life for now :-)
I had suffered Migraine intermittently since my 30s so was worried about that. I started combined BCP around 40 to control floods, then changed to mini pill at 48 and that neither increased or decreased the number of migraines. Neither has HRT at 1mg or 2mg ...:-)

[Hurdity]

Hi suzysues
Just to say ( getting too tired to think and have been out most of day/eve) that Tibolone is nothing like Oestrogel. Tibolone is completely synthetic whereas Oestrogel is made of the bio-identical estradiol ie the oestrogen found in our bodies so may not have the same effect at all re migraines. I'm not sure what oestrogen the pill contained then or contains now - I know there are lots of different types but also for mgiraines transdermal methods are preferred.

Here is what is says in the blue menu on the left:

Migraine is often triggered by hormonal fluctuations and therefore may occur around the time of a period. Such migraine may improve at the time of the menopause. Some women find that migraine may be triggered by the daily hormone fluctuations which can occur with oral (tablet) HRT so the transdermal (patch or gel) route is usually preferred with a history of migraine.

http://www.menopausematters.co.uk/atoz.php#GlossM

Hope this helps x

[Gig]

Can I just add that oestrogel is available from ANY dr.

It is not bioidentical in the sense that it's made just for you- it's just made from chemicals that are identical to what we produce normally.

You don't have to see a private gynae to have it.

I've been using it for 4 years. I do see a gynae privately and pay for the product- it's around £10 a month- but you can get it on the NHS.

Also- vaginal HRT is safe to use long term- many drs are not up to date on this.

[suzysues]

Hi suzysues
Just to say ( getting too tired to think and have been out most of day/eve) that Tibolone is nothing like Oestrogel. Tibolone is completely synthetic whereas Oestrogel is made of the bio-identical estradiol ie the oestrogen found in our bodies so may not have the same effect at all re migraines. I'm not sure what oestrogen the pill contained then or contains now - I know there are lots of different types but also for mgiraines transdermal methods are preferred.

Here is what is says in the blue menu on the left:

Migraine is often triggered by hormonal fluctuations and therefore may occur around the time of a period. Such migraine may improve at the time of the menopause. Some women find that migraine may be triggered by the daily hormone fluctuations which can occur with oral (tablet) HRT so the transdermal (patch or gel) route is usually preferred with a history of migraine.

http://www.menopausematters.co.uk/atoz.php#GlossM

Hope this helps x

That is really interesting! I will add it to my growing file of notes to take to the doc! Thank you so much! It gives me a bit of hope 

[suzysues]

Can I just add that oestrogel is available from ANY dr.

It is not bioidentical in the sense that it's made just for you- it's just made from chemicals that are identical to what we produce normally.

You don't have to see a private gynae to have it.

I've been using it for 4 years. I do see a gynae privately and pay for the product- it's around £10 a month- but you can get it on the NHS.

Also- vaginal HRT is safe to use long term- many drs are not up to date on this.

Yes I had to tell my doctor that Vagifem is safe after reading it here, but she is still paranoid about it! lol I like the idea of oestrogel, but do you have to take something else with it? (I am getting confuse with other posts on here) I don't really want to have a monthly bleed, as I haven't had one for over 3yrs now.

the other thing I wonder about is what will happen when I stop taking Tibolone? Will it take time to go out of my system,  or will it be a crash!! Can I start on something else straight away? Oh & the other thing is should I have a test for testosterone? As I believe Tibolone as it in it. I don't really want a testosterone in-plant. So many questions! 

[Hurdity]

Hi again Suzysues

Yes you would need something else as well ( assuming you still have a womb?).

You will need to take a progestogen of some sort and I always recommend Utrogestan - bio-identical progesterone but not everyone gets on with it. If you don't want a bleed then you would take it all the time but as you may have read on here some of us don't like continuous progesterone so put up with a bleed so we only have to take it now and again ( from monthly up to 3 monthly) - but this is not without its problems sometimes.

Also some women do get a bit of bleeding initially even on the conti type HRT.

As for testosterone - I have no experience other than pointing you to the info as earlier - but you would most likely need a specialist to test and prescribe this. If your own GP practice won't (mine doesn;t) then ask for a referral to a meno clinic, and depending on where you live there might be one near you (my nearest is over 60 miles away!). I don't think the implants are available any more in UK from what I;ve read on here but I might be wrong - maybe possible privately. Gel is what is prescribed now ( off licence unfortunately).

Just to clarify re bio-identical hormones - as Gig says these are hormones synthesised in the lab to be identical to our own hormones. The oestrogen in estrogel is most definitely bio-identical - it is produced (in the lab) from a plant source.

Hope this helps
x

[Taz2]

I would just like to mention that the meno-clinic I used to attend will not test for or prescribe testosterone treatment.  If you find one you want to use it is worthwhile phoning them first before asking your GP to refer to make sure they will actually address your particular problem.

Taz x

[suzysues]

Thanks ladies. I have joined a loss of libido help group on Facebook (its ok its a closed group) & its run by a women's doctor. She has said mostly what you all have, but she also said I may just need to lower my Tibolone dose to 1/2 a tablet daily, to reduce the risk. I think, if my doctor agrees, I will try that first. This is what she said:

Annie Evans -Women's Health doctor at drannieevans.com: Hi Sue - so sorry to hear about your migraines with aura with Tibolone . Sadly this can happen with slightly too high a dose of estrogen, by mouth. If I were advising you, I would be greeting you to switch to transdermal estrogen (patch or gel) as the absorption is much more stable (variations in blood levels can cause migraine too, and this happens on oral treatment) -this would also mean you could easily reduce the dose to a level where the migraines stop occurring. You do NOT have to stop HRT altogether because of migraine with aura, just get the dose right to stop it happening. (It's not the same as the contraceptive pill, which has a much higher dose of synthetic estrogen and DOES have to be stopped in women with migraine with aura). With transdermal estrogen you would need some form of progesterone to protect your womb lining, and there are different ways of doing this. The main ingredient you would also need is some testosterone gel in small doses, which works alongside the estrogen gel. The Tibolone (Livial) is a synthetic steroid with estrogenic, progestogenic and testosterogenic properties and so is a 3 in 1!! You could also try just taking half a 2.5 tablet of Tibolone every day (NOT one on alternate days, this will make things worse !!) so long as you didn't get bleeding with the half tab and your migraines lessened/disappeared, this would be a good option!

I feel a lot more reassured now, just hope my doc will listen!! 

[Katykitten]

Hi it seems that I only come here when something is going wrong & I meant to come in & share the good news! I was lucky & sailed through my meno & out the other side with hardly any trouble. But then after my periods stopped I started to get vaginal dryness, so was put on Vagifem, this helped, but my doctor didn't like prescribing it & gave me a bad time every time I went back. Than I started to lose my libido & I thought my life had ended! I read up on here & the net & then saw a newspaper clipping about Tibolone, so I asked my doctor about it & she was happy to put me on it! It took a little while but gradually I began to feel better & after about 6 months I really felt like I had got "me" back!    I gained some weight and have about 1/2 stone that won't go no matter what I do, but I can live with that. All  is rosey in the garden for a couple of years

About 6 months ago I was walking my dogs, when my eyesight started going a bit fuzzy, by the time I got home I had a full on kaleidoscope going on & realised I was experiencing my very first migraine aura. My daughter has suffered with migraines for years, so told me what to do if it happened again. It has since happened about every 3-6 weeks since then. But I know what it is now so take a couple of painkillers & lay in a dark room & it goes. I got one yesterday & hubby comes home from work & finds me laying on the sofa & insists I see the doctor. I didn't wan to go, but did it for him. So we go through the symptoms ect & she asks if I have ever had them before in my life & I say now. So she says "can you do me a favour & come off the HRT" She says you don't suddenly get this in your 50's, so the HRT is causing it & it can lead to a stroke!!!!! I am in shock!!!!    And I beg her is there another way? She takes my blood pressure & I tell her how healthy & fit I am & try to backtrack, so she gives me some leaflets about migraine and a month to think about it.

I have been thinking about it all day & feel like I have gone back 2 years, trying to remember how horrible it was back then. But I am also scared of having a stroke. I am not sure if I am brave enough to wait a month, but don't want to go back to being a dried up old prune again. I can't think about anything else. I am a fit healthy lady & I might be killing myself.    I keep thinking of the positives of coming off it, losing that 1/2 stone, not putting bad stuff in my body ect, but I also think what's the point of being fit & healthy if I can't have sex ever again! 

Hi everyone I’ve been advised to come off tibalone and take alternate days but I’m also reading it should be reduced by taking half a tablet for a few months and reduced in that way
Does anyone have experience of this?