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[Tempest]

Annie, thinking about it I think it may very well be due to the healing going on in your ears, actually! When I used to go to the ENT and have a nasal scope, the Consultant said the whole network of nerves is affected in eye, nose and ear area. I used to get a lot of twitching after having the scopes done. Maybe this is a positive sign that things are healing as they should!😊😊

[abbyH]

Wow this is great news Blakeygrey! So pleased for you
I too feel that this route might b the answer for me, and am desperate to try tibolone.. my doc is meant to be calling me later and hopefully I can get a trial ... I would also like to add testosterone (should I need) .. so wish me luck with that too!

Abby xx

[Annie0710]

Annie, thinking about it I think it may very well be due to the healing going on in your ears, actually! When I used to go to the ENT and have a nasal scope, the Consultant said the whole network of nerves is affected in eye, nose and ear area. I used to get a lot of twitching after having the scopes done. Maybe this is a positive sign that things are healing as they should!😊😊

You talk so much sense ! It's the left eye but my right ear is the poorly slow to heal one but yes could be so I will know when I get a twitchy right one soon !

Xx

[Tempest]

I'm thinking so! I had a scope in right ear/nose and eye twitched for a good week or so! I recalled after we spoke about the twitching the other day that this had happened - Consultant said it was because the nerves were disturbed and it should settle, and it did!

[abbyH]

missed the Doc's call.. and called straight back only to be told she was now onto the next call and couldn't speak to me as completely swamped
I've written an email requesting a 3 month trial
what dose should I be put on to start? given I'm on the lowest possible dose of E right now -

What she didn't realise was that Im under the guidance of the Panay Team at the Chelsea nd Westminster, not the Norfolk and Norwich who she contacted.. Which is even more confusing I know

I may just have to go ahead and buy it privately, but I shouldn't have to should I?

Abbyx

[Tempest]

There is one dose strength, Abby - 2.5mg. I'm so sorry you missed her call! Hopefully she'll get back to you promptly though. Keep us posted! xxxxx

[Annie0710]

Oh no my message got missed as Tempest and I posted same time.

2.5mg is the dose like Tempest said x

[abbyH]

Thank you, it was just I remembered reading elsewhere someone was on a higher dose?

I will just keep fingers x'd!

abbyxx

[Annie0710]

A dose of up to 5mg can be taken but I'd never start at that x

[abbyH]

Ok, I'll just wait for the go ahead to try it.. I think it's ridiculous I am being pushed around to consultant, when doc can prescribe!

I dont' want to be well in 6 months I want to be well now! I have been suffering peri and then meno since 2014....

Men would never put up with this, nor would it be tolerated.. GrRRRRRR! I just can't accept being slung on the scrap heap and told to accept loss of hair, looks,libido everything!!!

[Annie0710]

Totally agree.  Mine all started when I was 45 in 2012, 5 years on the only 2 things I ask for is hair (!) and to be relaxed socialising again

It's really not rocket science, surely there's a big book they can refer to about Tibolone .  I do understand the testosterone bit, they don't want to go against what isn't licensed but Tibolone ........ c'mon doctors ! X

[abbyH]

Annie. Me too.. I've self medicated my thyroid (huge improvements in energy - since I've upped the dose to 3 grains I've lost weight)
my hair seems to have stopped falling out

but, I have no libido. No boyfriend, my relationship crumbled during my peri and post meno.. My so called boyfriend left me because my vagina felt 'different' (what an a hole right?)
my whole sense of self esteem and value has crumbled.. And I feel this could have been supported by proper HRT at the right time.. and I'm still here post op 8 months on, no better...

I hope to be able to help others with this experience.. and will telephone doc's again on Monday to demand.. this just can't be right
hope you're ok xxx

[Annie0710]

I'm so glad you're self medicating thyroid, you shouldn't have to but sometimes, needs must

You should tell your gp to read this forum and see how women with no ovaries are being prescribed Tibolone and testosterone (not together)

If I didn't have my hair problem I really believe I'd be in a much better place with self esteem since being on Tibolone.  For me it's worked better than testosterone & oestrogen regime.  Maybe it's because I'm not on such a high oestrogen dose anymore but I have to say so far no libido but saying that testosterone didn't give me libido either, maybe that will come in time

I still use vagifem but I've noticed that I don't need the Sylk externally half as much as I did before.  I'm much more lubricated too

On testosterone my acrylic nails wouldn't stay on (vain I know) but now they seem to be :-). Little things make me feel better

X

[Blakeygray]

Hi Annie,  no, no twitchy eyes here, apart from when I'm winking at the other half   

You're also right about the gp manual,  my gp refused testosterone point blank but did find Tibolone in her 'book' and was happy to prescribe that after speaking with the practice manager.

I didn't ring the surgery,  so from Sunday will be on testosterone only. It'll be interesting to see what happens hot flushes wise.

abbyH,  isn't it a shame we have to take matters into our own hands.  And you're right about the higher dose of Tib; I've  read that there's a 5mg pill as well as the 2.5mg.

I still can't believe I feel ok after 14 years of hell and still think I'm in a dream and will wake up eventually.

[Blakeygray]

You should tell your gp to read this forum and see how women with no ovaries are being prescribed Tibolone and testosterone (not together)



On testosterone my acrylic nails wouldn't stay on (vain I know) but now they seem to be :-). Little things make me feel better

X

They all need to read this forum and yes you are spot on; it is the little things that make the biggest difference sometimes.