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[Anjia]

It looks like I will have to go private to get testosterone I am so angry I have seen two doctors who both refused when asked why I wanted it I said low libido and well being anyway they said no I dont need it the estrogen patch should be enough Im so fed up.

[Tempest]

Yup. Had this spiel myself. I can see me going to Prof. Studd just to be able to try it. Never have had energy on E only so I'm keen if I can get my blinkin levels up - I'm taking it very slow, so it could be some time.....

In surgical meno we truly are deficient -we've lost 50% of our ability to produce testosterone, for heaven's sake! There should be no ifs or buts if a woman's  E levels are sufficient and we want to try it.  I'm sickened by it all! 

I'm guessing this is why you tried Tibolone, just like me. It didn't pan out for me, you or Joesmum who are all in surgical meno. so that goes to prove that its just not sufficient for us.

xxxx

P.S. I had a private prescription from Prof. Studd last year but I let it expire expecting I would get it via the NHS. How dumb am I?

[Hurdity]

Hi Anjia

Are you able to get a referral to a menopause specialists on NHS? Even so there is a mixed approach from gynaes about testosterone - with some refusing to prescribe it off licence. It is really appalling that the main product available for women - the Intrinsa patch - was withdrawn for commercial reasons. Surely now and particularly since the NICE Guidelines, there is a case to produce them again? I wonder if anything is in the pipeline? Tempest - perhaps you can ask Prof Lumsden when you see her if she knows (because surely top gyanes in UK would know if it is going to be re-launched here or something similar?).

Hurdity x

[Anglichanka]

This is exactly my experience. Well, not quite: I asked for it twice at menopause clinic and was told it was pointless because I still had ovaries (even though they're pretty dysfunctional by now). I was refused twice. Then I asked my (lovely) GP (lovely but had to look up micronised progesterone when I first asked for it) to prescribe it, quoting the NICE guidelines at her (which says it can be prescribed off-label at GP discretion), and she said it wasn't in her remit and had to write a letter to a psychosexual clinic for advice. As I'm having a terrible time with depression and anxiety and panic -- losing about six days a month to it -- I decided not to wait for that but to go privately, was prescribed testosterone with no qualms and am now taking it. Too soon to tell. Also learned I was taking too much progesterone and not enough oestrogen, even though menopause clinic had discharged because I was apparently doing fine. Doing fine apparently means not having vasomotor symptoms. Never mind debilitating depression and total lack of libido....Anyway, onwards! Good luck.

[Tempest]

Oh yes! I had the 'doing fine' spiel too if vasomotor symptoms are controlled (not that mine were - night sweats remained - I was then told practically that i'd 'failed to respond' to treatment and was told that I should use 200mg ONLY of Utrogestan instead NIGHTLY, and to keep increasing it)! I was even told that my libido should return if I was sleeping better - I have no ovaries, for God's sake!

Was I supposed to conjure up libido from thin air?! What about my on going complaints of low mood, utter exhaustion, muscle pains etc? I drove myself bonkers thinking somehow I should be able to fix it all myself and that I was nuts! This is why I've chosen to go private. The empathetic and tailored approach I've received after my first consultation with Dr. Newson couldn't have been more different!

[DaisyB]

Tempest will you remember to send me PM with details of Newson?


 


DaisyB xx

[Blakeygray]

It is truly frustrating. Men can get their little blue pills (viagra) on the NHS, with just a nod and a wink - metaphorically speaking - but we have to beg, jump through hoops and end up paying through the nose privately.

[Tempest]

Hi Daisy!

I've just PM'd you.

Hugs! xxxxx

[Tempest]

Too true, Blakeygray!

Without revealing too much, I'm in talks with an influential person in the field of menopause issues as to whether this is in fact a legal human rights issue, especially for oopherectomised women.

If a man were castrated (oopherectomy is after all, female castration) or suffered total loss of hormone function through disease, he would certainly be given prompt and appropriate treatment to replace hormones to ensure health and quality of life unless contraindicated.

Too many women are expected to 'just get on with it' in misery. This is clearly from my view not only barbaric, but may be prejudicial from a legal perspective.

Women are still being treated unfairly and in an inferior fashion to men, and this is an abomination in the age in which we live.

xxxxx

[Hurdity]

I agree it's an abomination - where are all the research trials working out doses and products etc, long term safety etc so that the right products for women can be made available, and licensed at the right doses? After all we are living so long post-menopause now! I would be so interested to go to one of these conferences and find out the latest on what's happening - I think the BMS has a session this year on androgens in women (when I looked at few weeks ago - might just be wishful thinking!)

Hurdity x

[Blakeygray]

Good question. Here's another, why are so many gps still ignoring NICE guidelines.

[Lou44]

Yup. Had this spiel myself. I can see me going to Prof. Studd just to be able to try it. Never have had energy on E only so I'm keen if I can get my blinkin levels up - I'm taking it very slow, so it could be some time.....

In surgical meno we truly are deficient -we've lost 50% of our ability to produce testosterone, for heaven's sake! There should be no ifs or buts if a woman's  E levels are sufficient and we want to try it.  I'm sickened by it all! 

I'm guessing this is why you tried Tibolone, just like me. It didn't pan out for me, you or Joesmum who are all in surgical meno. so that goes to prove that its just not sufficient for us.

xxxx

P.S. I had a private prescription from Prof. Studd last year but I let it expire expecting I would get it via the NHS. How dumb am I?

Hi hope you don't mind me jumping in here but in a similar situation, 2 years post hysterectomy and bso, struggled on every type of oestrogen only and a trial of Tibolone...finally getting testosterone on Monday on NHS. Recently moved to new local authority and gp....to say they've been difficult and added to my stress is an understatement. Luckily I had already been referred to menopause clinic, 100 miles away but they seem to be really good and are giving me testosterone. If this doesn't work, I think I will be going private which we shouldn't have to!

Anyway just wanted to say that you can be asked to be referred to one of these clinics on nhs if gp is difficult and won't work with you on options. Mine is in Birmingham, pm me of you want more info x

[Tempest]

And here's ANOTHER question - why are so many top Consultant's ignoring the NICE guidelines too? 

The biggest advocate for T in women is Nick Panay. He believes every woman in menopause should be allowed to try testosterone unless obviously contraindicated. He believes it's safe, has been used in women since the 1930's (would you believe) and has many benefits and few risks.

Some of these are improving insulin resistance, helping to maintain bone mass and muscle, efficient fat burning, improved mood and concentration and of course libido.

We have MORE circulating androgens than estradiol pre menopause, so it's a nonsense that this is an exclusively male hormone that will make us all grow beards.

The ONLY problems I have ever come across after doing my own research is women who have received implants that achieved very high levels. I don't believe personally that T implants are a very good idea at all, as if excess is achieved then it takes a good while for T to leave the body and unwanted side effects may not be reversible.

I know Nick Panay was dismayed when the Intrinsia patch was withdrawn - as far as I can ascertain, it was a cost issue.

My bet is that if it were more widely prescribed, we would be in a better position to negotiate with the supplier to obtain this product at a favourable cost. After all, drug company's are in it to make a profit, and dismal demand in the UK is not going to make for a viable market for them. xxxxx

[Hurdity]

It is scandalous that solely commercial considerations are governing the availability of pharmaceutical products that have been licensed previously - not only Intrinsa patches, but products like Orthogynest pessaries ( for VA) and Utrogestan 200 mg capsules ( for HRT). Some of it is baffling. I think Panay is or has been doing research recently into T replacement - I read about rectruitment for trials maybe a couple of years ago?

Hurdity x

[Katia]

Even under a specialist it's only implants that are licenced. I find it hard to believe that a cream or patch wouldn't be licenced. The consultant said the cream is too hard to dose and too easy to get a bit too much. I'd be reluctant to try the implant as I don't know how I'd react, or if it would affect my hair, but feel I need some testosterone.