Please login or register.

Login with username, password and session length
Advanced search  

News:

Follow us on Twitter and Facebook

media

Pages: 1 2 3 [4] 5 6 7

Author Topic: At my wits end with all this  (Read 11926 times)

CLKD

  • Member
  • *
  • Posts: 78761
  • changes can be scary, even when we want them
Re: At my wits end with all this
« Reply #45 on: February 22, 2020, 09:34:39 AM »

 :thankyou:

Years ago my psychological sessions were ?75.00 an hour but it was never the full hour.  By the time she had arrived and when she began to leave earlier each week  :-\ - siting another client - they eventually got down to 35 mins..  She still charged ?75.00.

Our Solicitors charges ?250.00 per hour plus costs.  It is the whole package: his time, his experience, his company car, the building maintenance - not simply the time that he charges to the client.
Logged

Nairn

  • Member
  • *
  • Posts: 145
Re: At my wits end with all this
« Reply #46 on: February 22, 2020, 09:47:51 AM »

Hi Westie

Good that you are getting some answers.  I just thought I would give you an update following my earlier post, and yes it's been a lively thread!   I stopped the gel and 100mg utro daily and like Wrensong I was really gutted that the gold standard did not work for me- and feeling quite defeated that my HRT must be impossible to manage, and that there was no hope.  However as soon as I stopped I started feeling better immediately, mentally and physically, but the hot flushes, night sweats and dryness returned so another prep had to be found.  I now realise that I had turned into an emotional basket care on utro.

I'm now 10 days into Femonston conti (1mg higer dose) with daily vagifem,  and I feel like a different person, and I can see the old me coming back -in fact it has made me realise how much the untro affected and isolated me.   For the first time in 6 months I can think clearly, I'm interested in things and I'm contemplating exercise again.  The massive water retention has gone, and I'm slowly feeling like my body is mine again.  At first I felt I was a failure going back to oral HRT rather than gel or patches,  but nothing is perfect.  it's also a relief not to have to cart the gel and utro applicator around as I travel a lot for work.  So, early days as yet but though I would share what is hopefully a little more positive.  I was also helped by a wonderful NHS consultant so I've been lucky, but a challenging and long journey to get to that person.  There is no one size fits all,  and as you say everyone is different.

Good luck with your journey x
Logged

Hurdity

  • Member
  • *
  • Posts: 14076
Re: At my wits end with all this
« Reply #47 on: February 22, 2020, 09:59:40 AM »

Thanks for the update westie. Glad you are hopefully on the road to feeling better and increasing your oestrogen levels. Yes the research trials show the huge variation in absorption both of patches and gel and indeed tablets. As you will have seen from this thread flexibility is key. Those of us on non-standard regimes (using different dosing and delivery regimes of the proprietary products available) are able to share these with others on this forum to their benefit (provided they consult with doctors.). Of course if a product is not available, such as some of the BHRT regimes and products mentioned on this thread - then will only be helpful to those few women who can afford and wish to go down this route. Personally I would always recommend - even for those seeking private treatment - that they go to specialists endorsed by the British Menopause Society and you will see that the link on this website to specialists goes straight to the BMS page.(Btw it says this on the front of thast page: "In particular, the BMS does not endorse the use of compounded bioidentical treatments"). The ultimate hope is that sometime in the future women will all have access through NHS to menopause clinics and get the time allocated for personalised individualised treatment based on accurate information  and evidence that we all deserve.

westie - don't be downhearted that the regime you tried didn't work - many of us have tried several over the years and some are still tweaking  ::). Good luck :)

Hurdity x
Logged

CLKD

  • Member
  • *
  • Posts: 78761
  • changes can be scary, even when we want them
Re: At my wits end with all this
« Reply #48 on: February 22, 2020, 11:42:22 AM »

Agreed stellajane !  :thankyou:
Logged

Wrensong

  • Member
  • *
  • Posts: 2232
Re: At my wits end with all this
« Reply #49 on: February 22, 2020, 12:20:27 PM »

Hi Nairn, so good to hear how much better you're feeling on the Femoston & that you had a wonderful NHS consultant.  There are some very good ones out there - I've recently been lucky to be treated by an exemplary NHS medic whose care & that of his colleagues throughout the entire lengthy episode was beyond anything I could have wished for. 

In contrast, I was very disappointed after 4 failed trials of Utrogestan with different doses & types of transdermal oestrogen, to find that the private meno clinic I went to last year for further advice merely told me to persevere with Utro, saying if I took enough oestrogen I should be able to tolerate it.  The only alternative form of prog that doctor endorsed was Mirena, which I explained at 57 I didn't want fitted - both as I feared the difficulty of this as a childless woman with poorly managed VA who'd found her last hysteroscopy excruciating, and because my GP had told me if I opted for Mirena, another would not be fitted to replace it beyond age 60.

My HRT is now managed at another private hospital where my testimony that Utro really doesn't suit me is accepted without question & I'm treated, unhurriedly, like an equal partner in my care.  That attitude & having adequate time for consultations are invaluable to me.

I also felt something of a failure for my reaction to the "gold standard" combination & had so wanted it to work as it worried me to have to consider other regimens considered potentially more risky.  In fact I find it upsetting & disappointing that the only combination wholeheartedly endorsed these days by many authorities, seems to be the micronised prog with transdermal oestrogen, as I worry that that leaves many women feeling more at risk, apologetic & maybe even furtive about their HRT if their needs are for one of the alternative regimens.

Stellajane, like you, out of the progesterone variants I felt best on the Norethisterone in Evorel Conti, but only got poor absorption of oestradiol from it, insufficient for good symptom relief, so have had to persevere with finding an alternative.  Currently that's Estradot with MPA, a prog I would have preferred to avoid, though I have read articles suggesting its demonised reputation may be unfounded.  Needs must - bottom line is I'm worse without HRT than with & with other health conditions, need to do all I can to achieve best quality of life.

Another thing I meant to say in that earlier post, is that when we are very unwell & faced with struggle with the overburdened NHS to get the treatment we need, the stress of that can be considerable & at times enough to deter us from persevering, so we end up suffering needlessly with horrible symptoms & greatly reduced QOL, with all manner of potentially serious repercussions.   Easier maybe to persevere with repeated too short consultations & resistant GPs at the start of peri if you're still physically & mentally robust, but many of us have been weakened by the sledgehammer of menopause & are not up to pushing continually for help.  If there's no NHS menopause clinic with short enough wait or within reasonable reach, those seem very good reasons for considering a recommended private menopause specialist if we can afford it, where we go along knowing there's likely to be time to listen & an attitude in favour of HRT, both of which are sadly often lacking at GP level.  I worry that many women can't afford that luxury & that the NHS is therefore letting them down.


« Last Edit: February 22, 2020, 01:03:30 PM by Wrensong »
Logged

CLKD

  • Member
  • *
  • Posts: 78761
  • changes can be scary, even when we want them
Re: At my wits end with all this
« Reply #50 on: February 22, 2020, 12:38:03 PM »

To a certain degree the NHS is letting it's GPs down by not allowing 'time'.  All these quotas for waiting lists, being seen in A&E within so many hours but fining Health Autnorities that don't reach targets is IMO, B****dy ridiculous  >:(
Logged

Wrensong

  • Member
  • *
  • Posts: 2232
Re: At my wits end with all this
« Reply #51 on: February 22, 2020, 12:49:21 PM »

Agreed CLKD - there is a lot of constraint in the system & insufficient flexibility.  Those medics I know who've left the NHS & now work in private healthcare seem relieved that the environment is more conducive to treating patients as they'd wish.  A sad state of affairs.
Logged

GypsyRoseLee

  • Member
  • *
  • Posts: 2172
Re: At my wits end with all this
« Reply #52 on: February 26, 2020, 11:51:16 AM »

Such an interesting thread to read.

It is unfortunate that some women cannot access the private specialist consultants who are far more knowledgeable about menopause and HRT than GPs. Very often, even though GPs don't mind prescribing HRT 'off licence' they insist on instruction first from a consultant, purely to cover their backs.

This was very much my experience in the 3 years I went from pillar to post within the NHS and 2 separate NHS Menopause Clinics. Even these so called NHS specialists only wanted to really prescribe 'by the book' HRT regimes. However as soon as I had the authority of Prof Studd behind me, my hitherto very reluctant GP couldn't give me an NHS prescription for my specialised HRT fast enough!

My GP was even happy to prescribe me the testosterone part of HRT which he'd previously refused to even discuss. Prof Studd told me that testosterone is often the final magic key to making HRT properly work. And yet getting it via an NHS GP is nigh impossible.

I think we chatted about this a few years ago Hurdity, when you ended up having to go and see Dr Annie Evans at her private clinic in Bristol in order to get your testosterone. We compared notes on her at the time and what exactly did she mean by a 'pea sized blob'??? I still deeply regret that Annie Evans retired so soon after we went to see her, she was so lovely and compassionate.
Logged

Wrensong

  • Member
  • *
  • Posts: 2232
Re: At my wits end with all this
« Reply #53 on: February 26, 2020, 04:53:41 PM »

Agreed GRL, a shame Dr Annie Evans retired.  Imo she was a very knowledgeable advocate for women.
Logged

GypsyRoseLee

  • Member
  • *
  • Posts: 2172
Re: At my wits end with all this
« Reply #54 on: February 26, 2020, 05:27:10 PM »

Yes, she really was. I seem to think that she had suffered with peri menopause depression/anxiety - so she genuinely understood how debilitating it was.
Logged

Wrensong

  • Member
  • *
  • Posts: 2232
Re: At my wits end with all this
« Reply #55 on: February 29, 2020, 02:10:51 PM »

Sorry ladies bear with me - the first bit is off topic for the original post but follows on from Stella's last.  Stella, at my routine dental check yesterday my new & very young dentist (they cannot seem to keep staff at that practice) was trying to sell me as something progressive, the idea that in his words they are a "prototype" for a new NHS system which he says is now going to only annual checkups for those patients with good oral hygiene.  That includes me, he says.  So, against my wishes, I have been relegated to only annual dental checks from now on with scale & polish midway.  So only one of those a year too.  I remember when we all got 6-monthly dental checks with scale & polish included.  As we already pay for some of my essential healthcare privately & there is only one just about adequate household income & no private pensions ahead for either of us, we can't really afford go go private for dentistry as well.

I do understand some members' objections to compounded HRT but also believe strongly in informed choice, especially as we all know need for HRT can be great & the range of products to meet that need is inadequate in many cases.  I think as grown adults it's our right to choose what we try.  If those members who've posted they've felt compelled, under medical supervision, to try products not currently endorsed by mainstream menopause authorities (the compounded prog) are taking relevant precautions to safeguard their health - vigilance & regular endometrial scanning - then that's responsible imo & about as good as it gets in what seems an unsatisfactory situation of inadequate provision of a better range of approved HRT products.  So I completely understand why you're tempted by the compounded prog Stella - I've seen your post elsewhere saying that you're again feeling rough without HRT.

We all make choices about what risks we're comfortable with - I decided to give up alcohol because of its association with increased breast risk which we're told exceeds that from HRT.  Though I miss a glass of wine, I can live without it, but my QOL suffers too much without HRT so I choose to continue with that, taking other measures such as healthy eating & regular exercise in an overall "package" I feel is the best thing I can do for myself as an individual, with a unique health profile & set of circumstances.  I think that's the best any of us can do.

Having exhausted other options, I've also reluctantly ended up on a non-standard regimen as mentioned elsewhere, with very low dose prog for just 7 nights a cycle, the prog being of a type often demonised (MPA) & @ only 1/4 the standard dose for sequi.  This would perhaps be considered unwise by some, but was prescribed by a very experienced Endo with my informed agreement.  After nearly a year on this regimen I was scanned yesterday & pleased to be told my lining is "nice & thin", only 1-2mm, at the end of my oestrogen phase for this cycle, i.e. having not taken any prog for past 3 weeks.  As an unexpected bonus I'd had no bleeds at all on this sequi regimen for the first 9 months, when a very scant bleed a few weeks ago took me by surprise & was the reason I scheduled the scan before the full year was up.  It's unlikely I'd have been entitled to this scan on the NHS as my HRT is overseen privately & the bleed was to be expected on sequi, though the absence of them for all those months beforehand, was not - so that was why it unnerved me a little!  I now have to decide whether to ask my GP for an internal exam, wrt the so far one-off bleed, my smear not being due this year & the bleed not a consequence of sexual activity.

The point is it all gets both expensive & complicated when we feel obliged to go private & there may be worry associated with going off the beaten track with a non-standard regimen of whatever type, but it still feels worth it & to me this compromise comparable to those of you who put up with a substantial bleed in later years for the improved QOL you get the rest of the month and/or the protection we feel this affords us in terms of cardiovascular health, bones etc.
Logged

CLKD

  • Member
  • *
  • Posts: 78761
  • changes can be scary, even when we want them
Re: At my wits end with all this
« Reply #56 on: February 29, 2020, 02:25:51 PM »

Quality of Life is important.  Time medics began listening to patients? I am sure that it would save time eventuallY!?!

My polyp bled on contact.  Gyane wanted me to have it removed [privately  ::)] but I refused. At that time I wasn't mentally stable enough. He pushed for a date so I asked whether he was looking forwards to a holiday ;-).  ::). I made the appt. 4 removal then cancelled it closer to the date.  The polyp disappeared at peri.. 

We don't have expensive holidays nor life style.  So we are happy to pay for health care that the NHS won't or is slow to provide.  Good Dental care is so difficult to get that we have stuck with our Practice - we entered as NHS patients then they 'went private'.  I LOVE my Dentist  ;).  Again, it isn't his expertise what is paid for but the over-all set up: Practice, Rates, Electricity, Equipment, Staff, Insurance.  We have no dependants but would still pay if required.  If we are both well it's less stressful over all  ;)

I can't remember where I was going with this  :-\  ;D
Logged

Wrensong

  • Member
  • *
  • Posts: 2232
Re: At my wits end with all this
« Reply #57 on: February 29, 2020, 04:40:41 PM »

I agree your raising the dentistry was appropriate for this thread, as you say an example of exactly what we've been debating here.  My OH has good health but for his teeth - so his need for dentistry has always been greater than mine, but he's been supportive  of my need for private healthcare which has cost us a lot for expert endorsement of treatment I otherwise couldn't get on the NHS - the T3 situation  ::) >:(  So I completely understand your going private for your teeth - makes absolute sense.

Quote
Your low dose 7 day monthly regime seems to have worked out well for you. 1-2mm is very thin, mine was always 4-5mm. It hardly seems as though you need prog every month.

It helps Stellajane, but the 25mcg Estradot patch is unfortunately not enough to suppress night sweats completely though they are less intense & fewer.  I already sleep badly due to pain so I need to try to get a better HRT fit if I can.  More oestrogen will likely mean more horrible prog though  ::)  Incidentally, bloods have just shown I get nearly twice the oestrogen out of that tiny patch than I did on the 50mcg Evorel Conti!

You found what worked best for you - the long cycle, but I get that substantial bleeds into our 60's are tiresome to say the least.  I remember you saying you got on well with Norethisterone - was that in Evorel Sequi/Conti or as separate tablets?  If not the latter & you decide you want to go back on HRT, might the tablets be more tolerable with the gel than the Utro?  It's said to be very powerful so might give you a far scantier bleed.   Have you tried MPA?  Comes in a range of strengths.  Neither is body identical though, of course.

My oestradiol was unmeasurably low before starting HRT well postmenopause in 2015 & since then I've had BSO & being underweight I just can't seem to produce enough oestrogen to control symptoms without HRT.  Now in my 15th year of them after a 15 month HRT break 2018-19.  It just goes on!  ::)
Logged

Hurdity

  • Member
  • *
  • Posts: 14076
Re: At my wits end with all this
« Reply #58 on: February 29, 2020, 05:15:30 PM »

This thread has developed way beyond what the OP ? westie ? was expressing.  It has developed into a general ?private vs NHS?? which really was not the actual issue. Also into justifying expensive and unregulated compounded BHRT - whaaaat?

I'm going to have to repeat myself yet again.

1 As  far as I can recall ( though I am not re-reading this whole thread) no-one has criticised any individual for choosing their own treatment including monitoring, private or otherwise (even if it costs ?1000.)

2 For the umpteenth time compounded BHRT therapy is not recommended by the medical profession for all the reasons stated by the Menopause Societies. Dr Currie, Louise Newson and the rest. Of course any individual is free to choose to go down this non-standard route if they can afford it, including the associated monitoring to check their womb lining is protected - and marvellous for them if they have found something that works. The main point is that  it is non-regulated re product safety and consistency and there are not enough trials using specific products.
Louise Newson - https://www.menopausedoctor.co.uk/menopause/body-identical-hormones
MM website: https://www.menopausematters.co.uk/otherpreps.php
https://www.menopausematters.co.uk/pdf/magArticle4.pdf

3 Like I've said so many times, most of these very individualised and non-standard compounded products are beyond the reach of most women (costwise) and therefore to promote it on here is of niche interest only for the privileged few (who are able to save up etc) and (I've already said this before) can make women feel frustrated and depressed if it is suggested (or implied) that such treatment is the only route to improving their health = due to cost. Most of the time anyway it is not necessary as an individualised approach using standard and regulated products should be available on NHS.

4 The issue raised by westie and the one I feel especially strongly about and which I said very early on in this thread ? was that her GP was anti HRT and she felt she had to go privately in spite of the expense and time involved because of this. My comment was that westie should not need to go privately to discuss issues with her regime and how to tweak it to suit her so that she feels well. The whole compounding thing and BHRT was raised by Mary G and consequently altered the course of this thread. I can't believe we are still discussing such treatments. No-one said there was anything wrong with seeking private treatment, rather that an individual should not feel obliged to seek such treatment due to inadequacies of their local practice, notwithstanding waiting times for menopause clinics.

And just to re-emphasise ? I (and I am sure others) have no issue with any individual who have themselves chosen for whatever reason to go privately for an individualised regime even including unregulated non-standardised BHRT . This thread is not (well was not...) about that. Nor is it about private dentistry!

And again to repeat ? we do urgently need more research and greater flexibility in progesterone preparations, doses and routes as more of us are remaining on HRT for longer, as well as an expansion in menopause services and education for GPs so that women can receive the best and individualised treatment (including monitoring) from the products currently available.

wesite - I hope you are already feeling better on your new regime and if it works ( did Dr Newson suggest a longer cycle mght be OK in view of your ablation?), that she will write to your GP who can continue the prescrption. If your GP still refuses then time to change GP! It is your right to have appropriate treatment to your circumstances on NHS using products currently licensed!

Hurdity x


Logged

CLKD

  • Member
  • *
  • Posts: 78761
  • changes can be scary, even when we want them
Re: At my wits end with all this
« Reply #59 on: February 29, 2020, 05:28:31 PM »

Why repeat  :-\ ...........

Most threads meander  ::)

So what's the British Menopause Society doing about education?  GPs don't seem to be getting the message ..........
Logged
Pages: 1 2 3 [4] 5 6 7