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[JoannFran]

Hi all

I've managed to get some tibolone online (said I was menopausal).  I'm at the point where I need to try something different.  Can't face doing the Utrogestan again.

Interested to hear other peoples experience with it.  I'm a bit scared to take it as it says increased risk of blood clots, am wondering if this is a big increased risk or small.I don't have any other risk factors I don't think.  I'm not overweight, I don't drink or smoke.  Also can't find any real reason that they'll only give it to post menopausal women?

For those that have taken it, did it help with anxiety/low mood/overwhelm?  I feel like my hormones have sensitised my nervous system and now the anxiety/fear is keeping me stuck in what essentially feels like fight or flight.  Think I would rather try this first before antidepressants.

Any advice appreciated.  x

[CLKD]

That's why buying from the internet is risky.  Mixing meds without advice can cause more problems that they solve.  There mayB info in the treatments section at the top of the page?


MayB put the name of the product into the search box ........ make notes ;-)

[JoannFran]

Thanks CLKD, I know it's risky but at the moment not doing anything is more risky for my mental wellbeing and health.  I've had a little search on here about it but I can't seem to find anyone who's taken in it peri.  It seems that the only reason to take it post meno is because it can cause bleeding.  I'll keep searching.  Thank you x

[CrispyChick]

For those that have taken it, did it help with anxiety/low mood/overwhelm?  I feel like my hormones have sensitised my nervous system and now the anxiety/fear is keeping me stuck in what essentially feels like fight or flight.  Think I would rather try this first before antidepressants.

Any advice appreciated.  x

Now. That is exactly how I feel. And I've been through the wringer with this. I just tried chemical menopause as my last resort. Epic fail. My very odd symptoms came crashing in again. Which now proves it's not the hormones themselves causing most of my discomfort (don't get me wrong, I do get a lot of awful peri stuff - but it's just my worst symptoms).

Instead, I'm now thinking it's my body's overreaction to any changes I make. I've been trialling stuff for years. How I've had to accept that I need to stop. I'm over sensitised.

Instead I'm trying an SSRI. It's hell getting started - because I'm so oversensitive.

I appreciate you may need to find all this out for yourself. Ah I've now no idea if ill ever feel better, but I now know additional hormones are not my solution. Right now.

Good luck x

[JoannFran]

Crispychick I honestly truly think that this all kicked off with my hormones and then I got Covid and that was the perfect storm! And now whatever I do (regardless of my hormones) my body reacts like it’s going to battle. I had coffee with a lovely friend today and felt like my body thought it was preparing for a life threatening situation.
I’ve been reading a lot about the mind body connection and it seems like a lot of people with chronic pain/anxiety disorders starts with some kind of illness/stressful event which tips them into a nervous system breakdown. If you’re interested in this stuff then have a look on YouTube at Pain Free You. I find it really interesting. There’s also a few books on Amazon about it.  In my more calm moments (about an hour a day) I am determined that I will get over this with the power of my mind and then when I’m in panic mode (most of the day) I’d take anything to make it stop.
Anyway, just wanted you to know that I understand totally how you feel. It’s horrific.  I will not spent the rest of my life feeling like I’m slowly loosing my mind! X

[CrispyChick]

Thanks Joannfran

I'll take a look. Yes - nervous system dysregulation. It's awful. I'm looking at central sensitisation syndrome and functional neurological disorders as my body reacts to everything. In really weird ways!

And I do think hormones are playing a big big part for me. But changing them is horrific. So that's out.

Have you tried an antidepressant before? I used to use escitalopram with success. But getting on a therapeutic dose this time is hell. It's like it too is triggering. But since it triggers both anxiety and depression to start with, I guess that's not surprising.

[JoannFran]

CrispyChick I tried escitalopram a couple of years ago when this all kicked off and it was horrendous for me.  I had a 3 week panic attack and no sleep.  Dr said to stop.  I then ended up on beta blockers which I started at the same time as the HRT.  The beta blocker caused me awful side effects and the utrogestan was bad too.  Although it's hard to distinguish what was causing what. It just seems like my body reacts to anything I put in it.  I have Mirtazapine sitting in my bedside table but can't bring myself to try it yet.  The weight gain bothers me.  I hope the SSRI kicks in for you soon.    Has your Dr given you any benzos for the start up?  At least you know it worked before for you.  Good luck x

[CrispyChick]

Yip. Those first weeks are hell. They always are for me. I'm trying to push through. Big I've also got some weird symptoms been triggered this time.

Interesting about beta blockers. I'm taking a very low dose each day to try and curb the adrenaline effects of escit. But it's not working.

I have diazapan at the ready. But I'm far too scared to take it. So I don't think I will.

My body reacts to everything I put in it too. Including now - any amount of prog, The pill (yet used to take fine) and any herb that moves hormones - dim, sulphoraphane, Agnus castus.

It's crazy.

I'm hoping the escit calms my nervous system. Perhaps u could try the mitazapine??? X

[JoannFran]

I've got diazepam too.  5mg.  My dr gave me them for sleep.  I usually take half if I'm feeling really really anxious.  Took half last night because my husband was away and I had a great sleep.  It seems to be the only thing that actually works in calming my nervous system.  I don't like taking them either but sometimes i give in.  My dr gave me 14 tablets 2 months ago and I've only taken 4 so far (cut in half).

My body even reacts to the calm patches I bought  . Honestly though I think most of the time it's my brain!   

[CLKD]

Valium is fine when necessary.   I knew that it worked for me - 5mg when necessary - usually taken the night B4 I couldn't get out of an event: knowing that I could take 5mg the next lunch time.  I never required it.  My GP prescribed a set amount of tablets and would ring to check how I was using them.

Valium is used as a pre-med too.  It has a calming effect which allows us to C the wood for the trees.

I have also used non-drowsy anti-histamines to ease sleep: 3 consecutive nights and my sleep pattern was resumed. 

I think that some believe that they need HRT but other medications may be more appropriate. 

[bombsh3ll]

Tibolone has NO increased risk of blood clots.

There is a very small (much less than 1%) increased risk of stroke in elderly women.

The only reason it is not recommended in perimenopause is that you might get some irregular bleeding - this is a social reason not a medical one, and as a perimenopausal woman you are highly likely to experience menstrual irregularity at some point with any treatment or none, since it is a rare individual who goes straight from a regular cycle to nothing.

In my opinion tibolone is worth trying for anyone who is intolerant to progesterone. The only caution is that it isn't a contraceptive and shouldn't be used by anyone for whom pregnancy is a possibility.

If you got it from a licenced online pharmacy with a prescription from a GMC registered prescriber (this is often included in the service) then it will be genuine.

If you do get on well with it you then know it's worth having the battle for on the NHS, and nobody can tell you they "don't think it'll work" when you already know it does.

[JoannFran]

Excellent advice bombsh3ll, thank you!

I got it from a licenced online pharmacy, I just told a little white lie and said I’d stopped bleeding over a year ago.  My periods have started to become erratic anyway so that doesn’t bother me and my husband has had a vasectomy so no issues there! 

Thank you again for replying x

[Violetta808]

Hi JoannFran. I've been taking tibolone for 10 months and it's been really great for me. I'm post-meno. The only reason it's not prescribed it to peri women is, as bombsh3ll says, because it can cause irregular bleeding - ie you can't take it in phases that give you an enforced artificial period, so your own cycle might break through. But this is just mildly inconvenient. The risk of blood clots is absolutely minimal, for the reasons bombsh3ll explains.

So my experience (and I know we are all different) is it's made me feel normal again. I've had no side effects at all (of which I had plenty when I tried patches and pills). My mood is definitely better though it was never overwhelmingly awful in the first place. I was functioning, though I had definitely been feeling sad, depleted and a bit lost. Now I am much more resilient and 'myself' again and able to take things in my stride. Physically, I've stopped having regular headaches and the VA is reversed. I had completely lost any libido and while it's not anything like it was pre-meno it's definitely an improvement. So tibolone has been a silver bullet for me (and so convenient too - just one tiny daily pill). Good luck with it and I really hope it works for you.

[JoannFran]

Thanks so much for replying Violetta808.

So glad it works well for you. I’m going to give it a go!

Thanks again x

[flo69]

I thought I posted here already, I wrote a reply, wonder where it went?

I'm usually more competent than that, being a clear minded lady of 55 yo on tibolone in my third year now, love it.

I've high blood pressure so wasn't allowed traditional HRT for a while and they gave me tibolone to tide me over while I waited for them to investigate.

After many months they gave me ramipril to bring down my BP and told me I could go back to the old Oestrogen & progesterone synthetics if I liked.

  No way!!!!
 
Compared to Evorel, Estradot, Oestrogel, provera, utrogestan, cyclogest, mirena coil, norethisterone, in all combinations, tibolone is a breath of fresh air, no way would I swap back.

What do you want to know?

P.S. The fact they switched me to tibolone because I'd high BP tells me they don't think it's as much risk as other HRTs in that respect. I was told it can't be given to women who aren't post meno because it can cause birth defects. To me that is treating us like a field of rabbits who ramdomly get pregnant until no longer able to.