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[Annie0710]

I don't know whether I'm coming or going now :-(

Brief history:

Prior to June 2016 - oestrogen hrt since 1999

June :  new meno nurse calls me in for review, I tell her I still feel rubbish and getting nowhere, she said she's pretty sure I'll be low on testosterone after all these years and arranges for a testosterone test

July : turn up for my test, she said gps had a meeting and I must wait til September, reluctantly I accept

Today (September) : turn up for my blood test to be told gps won't agree to testosterone therapy as there is no licensed product for women.  I explained they can prescribe the men's one and use a tenth each day and that the only reason I'm aware there's nothing for women is because it wasn't cost effective and that NICE guidelines say to consider testosterone for certain post meno women.  She said it has to be female one for docs to agree and said she'd ask about Tiboline .  I said I don't know anything about it and it's obvious I've had the runaround all these months and probably my only solution is private.  She did the blood test anyway

My problem is I know nothing about Tiboline only that's it tablet and she said I should be ok with progesterone as I produced it for years after hysterectomy and before peri started (funny because previous appts she said I must NEVER touch progesterone again)

Do I try this Tiboline or save up and go private? I just want to cry, I feel like no one there is caring and just making decisions for me without listening to me

Please help xxx

Annie xx

[CLKD]

She is correct though - testosterone in the UK is difficult for ladies to get hold of.  Many years ago my GP told me that it would make my voice drop  . 

Have a 'search' for Tiboline on here ? make notes.  Give the Practice Nurse and ring and be blunt, ask what she would do.  You can then check why progesterone was a no-no until now.

[Annie0710]

Only high quantities would change your voice from what I've read

There's very little on Tibolone on here

She's stuck, she can't prescribe so has to ask gps in meeting for permission to these things so her hands are tied

I'm googling about Tiboline, I guess like everything there's good and bad reviews and some ladies on a hysterectomy forum are on it

It seems (from my understanding) it's a steroid where your body converts it to oestrogen/progesterone/testosterone

I hate not being heard at the surgery

Annie x

[Dediva Ann]

Dear CLKD I am SO SORRY that this is your experience.  I felt completely doomed knowing that I could never afford to go private but knowing that there was something out there which just might be the answer in terms of boosting my low mood and libido.  It took me being a suicidal wreck for my male GP (the lady one refused) to look in his BNF and work out how to give me Testosterone (and I am worrying that other doctors at the practice might challenge him on this since it is unlicensed for women.)  I haven't started it yet as am waiting for the order to come in.

Just a thought (this is what I was going to do if all else failed) could you email one of private gynaecologists, explain that you are not in a position to pay (and really why should you?!) and tell them that this is the response you have had from your practice and seek their advice.  That way they might provide you with some documentation you can take to your Meno nurse, or even possibly see you for free?  (I spoke to one of the private gynae's secretaries some time ago and she said that sometimes - though rarely - they will help in this way.)  Worth a shot.  Really feel for you and hope you get it sorted.  Please keep us posted.

[dazned]

My private gyne also refused to perscribe it off license for women but was happy for me to purchase androfem which is testosterone specifically formulated for women .

[Dancinggirl]

Annie0710 - I'd definitely give Tibolone a go first - could well do the trick.  If you try this for 3-6 months and things are no better then go privately. 
You say you feel rubbish - in what way?  Have you had a good look at the your diet and exercise and lifestyle - sometimes some tweaking can make a big difference e.g. Vitamin D, Omega 3 oils - I did this recently - I was under the impression that my diet was good but when I really broke it down I was deficient in certain minerals and vitamins. Also, do you do lots of brisk walking? DG x

[Annie0710]

Annie0710 - I'd definitely give Tibolone a go first - could well do the trick.  If you try this for 3-6 months and things are no better then go privately. 
You say you feel rubbish - in what way?  Have you had a good look at the your diet and exercise and lifestyle - sometimes some tweaking can make a big difference e.g. Vitamin D, Omega 3 oils - I did this recently - I was under the impression that my diet was good but when I really broke it down I was deficient in certain minerals and vitamins. Also, do you do lots of brisk walking? DG x

No DG, I don't do much exercise but I do make sure I'm getting all my vitamins etc.  I'm lifeless, so badly lack energy and can't remember the last time I had even a smidgen of a sexy thought and when we do I'm sure for days after (am on Vagifem and Sylk) and have the weird sensations on bladder and bowel, I feel like I'm sitting in something and any movement can trigger the feeling of needing to pee/poo but if I move again the feeling can sometimes (not always) go again so I never know where I'm at whether I need the loo or not

I'm just tired of all this, she said today its iffy they will even agree to Tibolone as its contains progesterone and I've had a hysterectomy , they just don't budge from their outdated thoughts and certainly don't think about the well being of their patients

I work long hours Monday's and Tuesday's and babysit my grandchildren Wednesday's and Thursday's and all that alone leaves me so tired, my joints ache, my back has never recovered from the last herniated disc last October and due to a birth defect my mobility is somewhat compromised so walking is difficult for me (I can do short trips)

But to top it off I had a scan booked for 4.30 today by a company that is private but takes Nhs referrals, did all my filling up with 2 pints, turned up and the surgery is closed for training, I spoke to the pharmacist who said they'd been trying to tell people and I've just looked at my phone and I've had nothing from them


DeDiva - how sad the lengths we reach to get help :-(

Dazned - did you source your Androfem yourself or was it prescribed ?
I just want today over with now

Annie x

[MIS71MUM]

IMO GP's are very disinterested in the detail of HRT and getting the doses/treatment right.

I paid privately to see a female Gyny, in the first appointment she offered me Testosterone after I had completed 3 months of sequi HRT.  She took lack of sex drive to be very important and impacting on your quality of life.  (I haven't got my T yet as I need an hysteroscopy and biopsy first as now have irregular bleeding.

So yes - I would save yourself the hassle and if possible go private.  I would hasten to add that you shouldn't have to do this, but unfortunately, many of us are finding GP's assume "1 size fits all" and if treatment doesn't work at first, there's no alternative options, it's AD's and out of the door!

My Gyny was also a Member of the British Menopause Society.

[dazned]

I sourced it myself from Lawley pharmacy ,there in Australia,after my gyne had looked into it for me. I do know for a fact there's a chemist in West Hampstead who carry it but you would need a prescription for it. The price of private prescription and cost of Androfem were about the same. I used a whole tube about 4months but have to say I never saw any positive results so didnt pursue it anymore.

[CLKD]

Also - NHS GPs are NOT allowed to give a private prescription.  I know a Surgery that has recently been wrapped over the knuckles!!!

Private prescriptions can only be sourced from a private practice.

[Annie0710]

I'm sure I've read on here that private consultants can/do prescribe for your GP to sign on Nhs ?

[Annie0710]

IMO GP's are very disinterested in the detail of HRT and getting the doses/treatment right.

I paid privately to see a female Gyny, in the first appointment she offered me Testosterone after I had completed 3 months of sequi HRT.  She took lack of sex drive to be very important and impacting on your quality of life.  (I haven't got my T yet as I need an hysteroscopy and biopsy first as now have irregular bleeding.

So yes - I would save yourself the hassle and if possible go private.  I would hasten to add that you shouldn't have to do this, but unfortunately, many of us are finding GP's assume "1 size fits all" and if treatment doesn't work at first, there's no alternative options, it's AD's and out of the door!

My Gyny was also a Member of the British Menopause Society.

And did it help ? I mean in ALL areas not just libido


Annie x

[Annie0710]

I'm also worried because of existing hair thinning, I've been reading what I can and I haven't seen any positives for hair increase on Tibolone whereas Testosterone can help there too

Annie X

[Nina]

Hi Annie what a rough time you're having!

Just to let you know that I use testogel but had to go private for the first script. He wrote to my gp and now it's on repeat. One box lasts 6 months so  it lasts a while, even if you have to pay a private script price. Mine was £48.

I feel great - sex life is back with a bang  plus my hair and skin are lovely too.

[Annie0710]

Hi Annie what a rough time you're having!

Just to let you know that I use testogel but had to go private for the first script. He wrote to my gp and now it's on repeat. One box lasts 6 months so  it lasts a while, even if you have to pay a private script price. Mine was £48.

I feel great - sex life is back with a bang  plus my hair and skin are lovely too.

Thank you Nina for replying!

It's so good to hear these positives about testosterone and I was sure I'd read that private dr's were sometimes sending prescriptions to NHS gps but even if they don't that's affordable (even after the consult has stung the purse strings)

Thank you

Annie x