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[JoClaireH]

Hi everyone,

I've been reading this forum since I entered the menopause and thank god for it, too - the wealth of knowledge here is astounding. It's helped me hugely.

After a bit of initial experimenting with type and dosage, I've been very happy on HRT and I still am. The type was changed recently, at my request, to a continuous combined (Tibolone) and again, I'm happy on it.

What I'm not happy about is that the Gynae Outpatients Clinic who prescribed it have said I can continue for two years then I have to have a Mirena coil and Oestrogel. I don't want a coil and I cannot have made that any clearer. I want to take my chosen type of HRT, having made an informed decision regarding the pros, cons and relative risks. I know lots of women do take their HRT well into their 60s. I'm 52.

Is there anything I can do, other than go private, which I can't really afford. I have an apt on Tuesday to argue my case so any advice would be very useful.

Thanks in advance.

Jo

[sheila99]

They can't force you to have it. Do they want you to change now or in 2 years time? If it's in 2 years they might have a change of staff/thinking by then. You can use gel with a different progestin, many people (including me) use utrogeston. But if tibolone suits you it would be sensible to stay on it, the next regime may not.

[Perinowpost]

I've noticed the mirena is pushed also, I think it's because of cost i.e., it's a cheaper option.  It costs £85 and lasts for 4/5 years depending on whether it's used for contraception or hrt purposes.  All that is well and good if it works, but it doesn't work for everyone.  I had one but had to have it removed.  Stand firm, no-one can force you to have it x

[JoClaireH]

They can't force you to have it. Do they want you to change now or in 2 years time? If it's in 2 years they might have a change of staff/thinking by then. You can use gel with a different progestin, many people (including me) use utrogeston. But if tibolone suits you it would be sensible to stay on it, the next regime may not.

The letter they have sent to my GP says

"We discussed Tibolone versus the Mirena coil and local Oestrogen gel. She wanted to try Tibolone first. I may continue with Tibolone for two years (from now) then 'if she has symptom we can then opt to have the Mirena coil and Oestrogel gel. She wanted to try Tibolone first. I have her a prescription worth of three months. We will se her in clinic to review the outcome results and if she is happy she can continue for two years. If she has symptoms, we can then opt for the Mirena coil and Oestrogen gel. WE will keep you updated with her progress".

Firstly, we only discussed Tibolone because I asked for it. Secondly, the only option they were putting on the table as the Mirena cil and I vehemently argued against it. Why would I want one I  two years time if I'm happy with my Tibolone?

[JoClaireH]

I've noticed the mirena is pushed also, I think it's because of cost i.e., it's a cheaper option.  It costs £85 and lasts for 4/5 years depending on whether it's used for contraception or hrt purposes.  All that is well and good if it works, but it doesn't work for everyone.  I had one but had to have it removed.  Stand firm, no-one can force you to have it x

I read that it was cheaper but I pay full prescription charges for my HRT - double when I was on Femoston. It's not like I'm getting it free but even if I was, we should have a choice IMO.

[CLKD]

Go to a Menopause Clinic.  Gyanecologists know very little and are counting costs. 

[Perinowpost]

Yes it's wrong, I agree X

[JoClaireH]

Go to a Menopause Clinic.  Gyanecologists know very little and are counting costs.

This was the menopause clinic at Purley Memorial Hospital, Gynae Outpatients Dept but NOT, as I have repeatedly requested and been refused, a specialist menopause clinic.

[CLKD]

Who did you see, anyone dedicated to menopause treatments?  Is there anywhere close by that might be better informed ?  Have a look at Dr Newson's website for advice?

[Hurdity]

Hi JoClaireH

 

I agree with the others - there is no way they can force you to have an HRT product you don't want and I notice that the emphasis in the letter to your GP is on "we" and if this wasn't your agreement or not discussed then it does not represent your view and you will need to say this to your GP!!

If you want to use Tibolone and are happy on it and no medical reason why not - then there is absolutely no reason for you not to have it and especially as you are so young for goodness sake! 52? Some of us were still having regular periods at this point and I didn't start HRT until almost 54 (still on it in mid 60's  ).

You can point out that it is low dose and also the libido enhancing properties of Tibolone - but reserve the right to change your mind at a later date. However this should be  YOUR decision in conjunction with the medical profession's advice or suggestions - not made by them for you.

Please do not worry but maybe next time you see your doc (on Tues) put this on record that this is not your view. In any case maybe the likely outcome is that the GP will not flag up two years from now - or do you have regular appointments with the gynae dept?

YOU DON'T NEED TO GO PRIVATELY FOR THIS!!!

There is plenty of information about all the menopause on this website - look at the menus above under HRT and follow the links.

Hope you continue to feel well

Hurdity x

[JoClaireH]

Thank you all for your responses. My appt tomorrow is with the Gynae Unit so I'm going to query the contents of the letter. It could be a mistake I suppose because the same registrar who wrote the letter wrote the wrong name and the wrong date on my prescription referral form. This is my second appt with the same registrar so we'll see. I'll update after tomorrow.

Thank you again for the support.

Jo

[JoClaireH]

Hi JoClaireH

 

I agree with the others - there is no way they can force you to have an HRT product you don't want and I notice that the emphasis in the letter to your GP is on "we" and if this wasn't your agreement or not discussed then it does not represent your view and you will need to say this to your GP!!

If you want to use Tibolone and are happy on it and no medical reason why not - then there is absolutely no reason for you not to have it and especially as you are so young for goodness sake! 52? Some of us were still having regular periods at this point and I didn't start HRT until almost 54 (still on it in mid 60's  ).


Thanks, Hurdity. I have a feeling it's a combination of lack of expertise in my PCT and penny-pinching. Rest assured, I will fight it all the way. I'd just rather not have to!

Jo x

You can point out that it is low dose and also the libido enhancing properties of Tibolone - but reserve the right to change your mind at a later date. However this should be  YOUR decision in conjunction with the medical profession's advice or suggestions - not made by them for you.

Please do not worry but maybe next time you see your doc (on Tues) put this on record that this is not your view. In any case maybe the likely outcome is that the GP will not flag up two years from now - or do you have regular appointments with the gynae dept?

YOU DON'T NEED TO GO PRIVATELY FOR THIS!!!

There is plenty of information about all the menopause on this website - look at the menus above under HRT and follow the links.

Hope you continue to feel well

Hurdity x

[EleanorB]

I'm not sure of the pros and cons of tibolone so can't speak for why they might want you off that - other than the cost factors some have mention. I can however say if there are no pressing reasons to come off a regimen that works for you, fight hard no to. I am 3 months into a mirena and frankly wouldn't wish this on someone - brutal side effects. Why risk it if you are happy with what you've got. Re private, often u just have to pay for one consultation and then they write to your gp who prescribes. It can mean you simply pay the cost of one appt, which is usually under 200 pounds. Not cheap but if you're desperate to stay on this regimen and the nhs won't play ball after trying, worth considering.

[sheila99]

Eleanor what side effects do you get? I'm thinking of having one as I get tired on utro.

[Sgtvhilts]

No- you don't have to do anything.  Grrrr.
There is a quote I love “what are the scariest 9 words in the English language.
“ i'm from the government and here to help you”
Change government to meno clinic!!!!
I have ‘dumped' meno clinic - they were just spouting out the not so NICE guidelines.
The regimes were, for me, torture. So, eventually I ‘ inveNted' My own- which has got rid of all my symptoms.
My GP is very supportive after some persuasion. So, no ,only do stuff you want to do , stick to your guns. That's what I did and it worked. No need to go private- often it is worse than the NHS