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[bear]

It does sound interesting.

Go BeaR!

Hi stellajane,

Thank you for the encouragement, lol.

BeaR.

[Hurdity]

"This thread started out as very measured, with plenty of sensible caveats and carefully considered information. It wasn't remotely contentious - if anything it was positively staid". Absolutely - in fact my posts are probably quite boringly staid to many!!

"It's not beyond the realms of possibility that strident efforts are being made to cause contention in order to get the thread shut down? I very sincerely hope not."

Well judging by the number of posts seemingly disagreeing with anything I post - I sincerely hope not too! It started getting contentious pretty much at the point when dangermouse started talking about the extreme stance of the BMS as well as some uncalled for comments by CLKD is response to my providing information about the society.

Are members suggesting that those who don't agree with cBHRT should not post here if they disagree and if they provide another view or a counter argument?

I make no apology for using the term privileged few ? especially in this situation ? because that is an accepted phrase, and any sense of shame is in the imagination of the reader. No implications whatsoever intended. Many of us are privileged in many ways (and I include myself in that) and I don't want to forget that.

My view is ? yes of course it's fine to report a treatment that works ? and to discuss the TREATMENT itself and its relative merits ? especially evidence based information and how it sits within current scientific and medical thinking. No-one has ever said that should not be done. No-one has said that individuals should not be free to choose whatever treatment they feel works best for them. Like I've already said I am very happy that women have found treatments that work. However it's the over PROMOTION of the expensive private bespoke unregulated cBHRT, as if on equal terms with all other treatments, that I object to, notwithstanding that a few who are financially better off (!), have benefited from it as a last resort. No criticism of anyone's INDIVIDUAL choices whatsoever.

If someone randomly landed on this website and forum wondering what to choose for their treatment then I feel a responsibility to help them find whatever treatment they can firstly on NHS, empower them to talk to their docs, provide them with all the information and guidelines out there,  or at least if they have completely exhausted that option ? to find a private specialist who can give them even more individualised treatment, but using products that are known to work so that at least they would not be wasting their money.

Yes I do think pm's are the best place to exchange all of the details of clinics and regimes if someone has decided to go down this route ? but my view for what it's worth - is that it should not be promoted on Menopause Matters.

No-one has suggested it should not be discussed - in fact personally I welcome it because it makes me go and look things up!

Hurdity x

[bear]

[waves at dazned]

It's utterly ludicrous that we can't discuss alternatives to HRT on the flipping 'Alternatives Forum' FGS! There's alternative treatments on here that I wouldn't touch with a barge pole, frankly. But again, I absolutely defend someone else's right to bloody try them.

This thread started out as very measured, with plenty of sensible caveats and carefully considered information. It wasn't remotely contentious - if anything it was positively staid.

It's not beyond the realms of possibility that strident efforts are being made to cause contention in order to get the thread shut down? I very sincerely hope not.

We all know BHRT isn't regulated, yet. We absolutely know it, okay? We know. But, plenty of women are prepared to still try it. It is their choice.

Their choice.

Hi GypsyRoseLee,

I agree, there are quacks and there are doctors who prescribe regulated, yes regulated, unlicensed use of licensed medicines, they inhabit two different universes and shouldn't be thrown in the same bin by people who are not quite clued up on the subject.

BeaR.

[bear]

Sorry for so many posts, girls. I can't seem to be able to multiquote today, not sure why.

BeaR.

[Ladybt28]

I don't find any of it contentious at all and I think "alternative therapies" is exactly the right place to discuss it (as CKLD points out anything not routinely prescribed or "mainstream" might be considered "alternative") Personally I think its getting a bit silly in terms of splitting hairs on the "dictionary definition" of the words used and which section of the forum it should go but hey ho!).  I do not want the thread "shut down" I think it is a perfectly reasonable discussion to have.

I cannot prove it but I might suggest that it is pretty safe to say that new ladies coming to the forum are most like to start in the "all things menopause" section, post their questions and get answers, help and comments and read experiences purely based in the first instance talking about hrt considered "mainstream" and freely available on the NHS.  There is always going to be the discussion about NHS versus private and costs involved but ladies "choose" private regulated hrt prescriptions and consultations all the time and post on here.  We all know we shouldn't have to be doing that, but going private is not considered "contentious" on the forum??

I have not, in my time on the forum  seem the "unregulated" areana being routinely actively "promoted" over and above the usual NHS routes or products, but it would be reasonable to say that as the "mainstream" options are tried out and found to be failing over a reasonable period of time, the list of options for "more difficult cases" obviously reduces.  Therefore once you start moving into "I've been on hrt for x years and tried X,X,X, etc" posts, and therefore the "end of tether last chance saloon" discussion, I cannot see why it would a problem to suggest that "unregulated" options are out there but "it's your choice and at your own risk and expense".  That is not "promotion", that is "discussion".  I would also say that the people who regularly comment and provide experiences to newbies are not "irresponsible posters".  In fact as we can see from how this thread has turned, those who have this experience feel only safe to lurk in the shadows.  As long as it is a reasonable exchange of views and opinions, then everything is for discussion?  It's about opinions and choices after all, but not dicussing something available because of disagreement would seem to me to be a bit unhealthy.  Its a treatment, its out there, you cant just sweep it under the carpet.

Bear posted the "quakary" comment and there yes here is plenty about but this is not what we are discussing in this thread...nor are any of the ladies who have benefited from "unregulated" (for want of better word!) obtained them from anything other than reliable sources who are also well documented elsewhere and who have been talked about on numerous TV programs.

This is a fairly "niche subject" because it is a "niche" treatment and probably a subject of "last resort".

GRL and Bear's comment just about sum it up for me.  There are so called experts prescribing regulated hrt who are downright dangerous because they haven't a clue what they are talking about!  On the flip side there are knowledgeable and diligent experts in their field prescribing "unregulated bespoke hormone treatments".  Not having an active discussion about either does'nt help menopausal women at all.
Information, options and choice ladies is the key to the whole thing for me! 

[CLKD]

It is *not* an accepted phrase on here .............. as someone who worked with the NHS for many years I have seen medical provision from both sides: private and NHS.  I have made choices on what was required at the time for my well being.  I have also been let down by medical health services when I was crawling on the floor, begging for help - both NHS and Private sector.

It is about choice.  As a complete meander, my Grandads and other relatives went to War to give people born later: CHOICE: my FinL spent time under the 'care' of the Japanese to give people born later: CHOICE.  Choice is what I do, every day and not always relative to health care.

Uncalled for  - 1 person has complained, no one else jumped in at me  . In fact I had several back-room e-mails of support.  Go figure.

As many consider that the choices these ladies have made are not mainstream: how can the discussion not take place as an 'alternative' ...... in an alternative room  .  [thanks Ladybt28]

Serious illness needs serious consideration.  It has been obvious that many ladies across the UK are not getting what they require from the NHS especially with regards menopause understanding.  Until the BMS sends a letter to every lady in the UK about what is available and how they are instructing GPs, we will continue having to source what suits us as individuals regardless of if we have to pay for it or not.

It is obvious that GPs simply are NOT getting the message.  Ladies are still being told that they are too young, not menopausal as they don't have hot flushes; aches and pains can't be due to hormones etc., etc., etc.; and that's those who report here, there must be 1,000s across the UK who despair.  I also worry about those in ethnic communities who may not have access to the internet and/or less than sympathetic families.

[CLKD]

I HATE the word 'expert' with a passion.  NO ONE is expert at anything - most people know a little about lots of issues.  Knowledge is power which can be shared - so that people can take what they require at that moment in time and shelf other experiences for later use if necessary.

[GypsyRoseLee]

I have sat in front of a NHS gynaecologist in an NHS Menopause Clinic who seriously doubted I could be peri menopausal because I wasn't having hot flushes. The appointment was an utter waste of time and I had waited 5 months for it.

I have sat in front of an NHS psychiatrist in an NHS clinic who wanted to prescribe me Librium and give me electro convulsive therapy for my 'baffling depression' FGS!

Plenty of fully licensed and fully regulated doctors within the NHS who are very secure in their ignorance and happy to prescribe potentially dangerously personality changing treatment and drugs that would only have damaged me.

But, hey, ECT is licensed so it's perfectly fine to give it a whirl...

[CLKD]

That could be a whole new thread GRL - I would stop unregulated ECT treatment completely.  Unregulated = giving a patient ECT without consent.

[dazned]

Hi BeaR , thanks for asking me what I eventually settled on. I don't believe that you were around when I first came here so to save you having to look my posts up...
I first started on elleste duet tablet hrt when the 4 th gp I saw agreed it was my hormones that was making me feel " not right ", you know your own body don't you. I was about 48, after a few weeks I was back to the normal me. Fast forward about 3/4 years and it just stopped working for me. I was wretched, in a very dark place, my insides felting like they were fizzing or vibrating, anxiety off the scale and I truly thought I was dying! In fact some days I wished I was! I had to pack up work as some days I couldn't even wash or dress myself. Strangely I never had hot flushes. I decided to see a private consultant where I spent the next year,18months wasting my time, not money as he told my gp what to prescribe, trying 3 months oestrogen only, still no improvement with gel or patch, then the " good star" gel and utrogeston, that made matters worse! He prescribed testosterone, Androfeme which is formulated for women, you name it I tried it. In the end I threw myself on my dr desk, literally, and begged him to give something to make this stop! He prescribed mirtazapine which I know is controversial here in itself but I didn't care at that point. Within 2/3 weeks with the support by PM of a member on here also on it I was back to living and enjoying my life slowly again. Now I don't care if it's the first line appropriate medication or the science behind it, in MY menopause it gave me my life back. I've since moved home, moved area, started a new job, travelled and found joy again. Bet you wish you hadn't asked.
However people choose to manage their menopause I support you and wish you luck.

Hurdity , I'm really sorry to hear that you are unable to apologise for my "imaginary" hurt feelings , I assure you they didn't feel imagined.😢

[dazned]

My apologies BeaR if you thought I was belittling your obvious scientific research because I wasn't. I'm just an ordinary woman trying to manage her health the best way I can. Luckily most here haven't experienced the darkness that menopause can bring. Thank goodness.

Wave at GRL.

[bear]

Hi again, dazned

Apologies not accepted!  What? 

I'm so sorry you had to go through all this until you could find a proper treatment. I think it's brilliant that Mirtazapine has worked for you and that you had the support of your consultant and a member on here. Glad you have moved on (literally) and found joy again, that's really encouraging!

BeaR.

[Hurdity]

Hurdity , I'm really sorry to hear that you are unable to apologise for my "imaginary" hurt feelings , I assure you they didn't feel imagined.😢

I found it very patronising.

Look ? I really don't want to prolong this because it is causing bad feeling ? but when it comes to making personal insults I feel I must respond. Sparkle (and dazned) ? you have posted late on this thread, which of course is fine but you choose to pick out a phrase out of context and it has been misrepresented.

Please read the whole thread for context and if you want to see what I meant then look at my post from yesterday morning first thing, after Dr Currie's post. I can't say it plainer than that. Just to reiterate yet again ? my comments are NOT about private treatments vs NHS, nor have they made or implied criticism of anyone who has decided to pay for private care (notwithstanding that they should not have to pay for such treatment for menopause which should be available equally to all), they?re criticising expensive bespoke cBHRT for all the reasons already given, and the promotion of it on here to the extent that members who can't really afford it are tempted to go down this route as possibly the only (last remaining) available option, and as if it were on equal merit and efficacy as rBHRT (according to BMS definitions as per this thread).

You will see I have not made any personal comments that could be called offensive or upsetting to anyone, and I strive not to do so because that is never my intention ? although I make no secret of my view that these expensive treatments should not be promoted on here. it's important to discuss them and their merits ? and I posted about the biological aspects of the progesterone in this context but that was mostly ignored.

I have said loud and clear that I am happy for anyone who is feeling well during and post-menopause and the decision on treatments is a choice ? but this choice should be based on proper information and evidence, and that this choice - because it is not recommended at the highest medical and scientific levels, and is not a choice that is available to very many women ? should not be promoted on here. Discussed in principle, yes, promoted (and overly defended and justified) in the way that it has been, no.

Hurdity x

[CLKD]

Morning Ladies >wave<


Yes I do think pm's are the best place to exchange all of the details of clinics and regimes if someone has decided to go down this route ? but my view for what it's worth - is that it should not be promoted on Menopause Matters.


Who suggests that issues shouldn't be promoted on MM?  Does Dr Currie read every thread every day ?   

[GypsyRoseLee]

MaryG made it abundantly clear that she had turned to BHRT when every other avenue had been explored and there was nothing else left to try. It didn't come across as promotion at all.