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[Wrensong]

Would be interested to know members' experiences of systemic HRT if they deferred starting it until a few years or later postmenopause.
 
1) Have you come late to HRT & really felt the benefits?  If so, how long after final period did you start HRT & did it take long to find the right regimen?  In what ways does HRT help you?
2) Does anyone think they may have missed the boat in terms of their body's ability to adapt to or gain maximum benefits from HRT? 
3) Are there symptoms you've found especially resistant to HRT?
4) Are we less likely to be able to tolerate progesterone if we go several years after last period before starting HRT?

I deferred starting HRT until 3 years postmenopause, had a break of over a year, then started again 7 years postmenopause.  Oestrogen & testosterone have helped with a range of symptoms, but I seem to be increasingly intolerant of progesterone & inexplicably feeling less well on the E&T phase of my cycle, whether standard length or long.  Trying to work out why this is & would appreciate hearing other postmenopausal women's experiences.

[Postmeno3]

Am just beginning this route, Wrensong and it's possibly far too early days for me. Your "missed the boat" reference has struck a niggly chord, however, at 69, but I don't want to be in that zone quite yet as, for me, the worry is the trial and error process using up energy and time. Having had all the symptoms (and more) of oestrogen deficiency for so very long (seventeen years) and those being masked or misinterpreted by other "solutions", there is now a frustration, grieving even, which I hear a bit from you? PM me if you wish, though? 💚

[Kathleen]

Hello Wrensong.

Our stories are very similar I think. I also waited three years after my last period before I began HRT however I never did find the perfect fit. I also took a long break in 2019/2020 but resumed at the beginning of this year.

 My physical symptoms have resolved but various GPs told me that the emotional symptoms took longer to fix and unfortunately these are the ones that continue to bother me.

I honestly don't know if I am intolerant to progesterone!
Earlier this year my meno doctor advised me to stop using Utrogestan for several weeks to see how I felt on Oestrogen only. I think she was expecting me to report a huge improvement but I didn't notice much difference which confused us both lol.

I watched a YouTube video by the actress and presenter Nadia Sawalha yesterday where she talked  about her menopause and using HRT. She said that her last period was eight years ago and she only started HRT with Louise Newson eight months ago. She uses a patch and testosterone and claims to be feeling much better on it after a few problems with breast tenderness and bleeding at the beginning.  I wonder if her experiences will change as her HRT journey continues. Incidentally, I note that Lorraine Kelly and Davina McCall also use a patch and testosterone and not the supposed 'gold standard' of  Oestrogel and Utrogestan although Davina tops up with one pump of gel every day.

You raise some very interesting points and I look forward to reading the comments of other ladies.

Wishing you well and take care.

K.

[Dotty]

I started hrt 3 years post menopause, not having realised that all my horrendous symptoms were due to menopause….I was incorrectly diagnosed with ME / CFS. It took about 6 months to find the right hrt, but once on the right type and dose my horrendous symptoms went. I’ve now been on Oestrogel, Utrogestan and Testosterone for 3.5 years.  xxx

[Wrensong]

Thank you to everyone who's replied so far, it's really helpful to compare notes  & yes it would be good to hear from more women in this situation.  When I set up the thread I had in mind that there were several of us quite a way postmenopause who had not yet felt our HRT was sorted, but couldn't recall who had come late to it in the first place & wondered whether this could be a factor in our limited progress.

Postmeno3, as you say, it's early days for you & there is every reason to think you will feel better on HRT given the right type & dose, so please don't be unsettled by my questions.  In fact I hesitated to set up the thread for fear it might be discouraging.  It's entirely possible my other chronic conditions which inevitably complicate the situation, are simply muddying the picture too much for me to be sure what's going on & possibly limiting how much I can reasonably expect of HRT.  So I hope no-one will be put off & always have that same concern when I post about the negative aspects of my own experience on others' threads.  But I also feel it's important to tell it like it is as there can be comfort in knowing we are not alone with our struggles.

As for grieving, I'm not sure, but the background is complex.  There is regret that I waited so long before starting, but I had good reasons for that & did what I thought best at the time, without the benefit of a crystal ball to tell me that symptoms would continue to be troublesome for so long!  This isn't a sob story though, as I'm thankfully way better than in perimenopause, but had hoped for greater improvement than I've achieved to date & am trying to understand why the response to HRT has got worse in the last 18 months & what, if anything, I can do about that.

Kathleen, I'd forgotten how similar our stories are in terms of timing, so thank you for reminding me.  It's sad that so many of us find some of our symptoms are really resistant to HRT when we try so hard to get better, as I know you have.

The thing I most need to crack is poor sleep - the horrendous package that constitutes night sweats, added to chronic pain, continues to wreck my sleep 16 years on, so that energy & stamina as the day progresses are frustratingly poorer than I need them to be.

The progesterone intolerance is really throwing a spanner in the works & gut instinct is that the same mix of hormones every day would be easier to combine with my less than straightforward thyroid replacement.  I think cyclical HRT is wrong for me, but can't tolerate more than a week of low dose progesterone at a time, which in turn limits how much oestrogen I can take.

How frustrating that your trial of oestrogen alone didn't throw any light on your response to HRT.  I wonder whether it wasn't long enough for you to feel the benefits, but of course we can't continue indefinitely without progesterone all the time the uterus is intact.  Are you content to continue with the current plan?

Thanks for posting about Nadia Sawalha's experience - it was news to me & interesting that she went so long & now feels much better.  Presumably the other celebs you mention have had hysterectomy if they're not using progesterone?

Dotty, thank you for sharing your history.  ME/CFS was suggested to me by a neurologist some years ago, but I didn't follow it up, wanting to concentrate on getting the confirmed conditions better managed.  My instinct was anyway that menopause was behind much of it.  It's good to know that you are so much better for the right regimen, especially as it's the one that seems to be most in favour with menopause authorities at present.  Can I ask what were the symptoms that have responded well to HRT?

[Lamplighter]

Hi Wrensong, sorry to hear you're having belated issues with progesterone - seems to be the culprit in a lot of cases lately.

I too came to HRT late, when I was 58, about five years after my last period, and took to it straightaway - all sorts of things sorted themselves out that I hadn't even realized were due to being postmenopausal. Unfortunately five years after starting, some bright spark discontinued my brand of HRT (Nuvelle continuous) and so began a frustrating and painful exercise lasting two and a half years in almost futility trying to find a workable substitute. 

Nothing seemed to work so I spent some time testing out being off HRT altogether (lasted five months the first time and about two months the second - return of postmeno symptoms with a vengeance).  After over two years of faffing around feeling more and more hopeless, I finally found Oestrogel and Utrogestan (oral tablets) worked reasonably well, and am currently on that regime.  I have some suspicions about the progesterone, but as I'm also now taking paroxetine anti-depressant it's hard to tell which side effects are down to which medication.  Still, the Nuvelle had progesterone in it and I had no side effects at all (apart from some breast tenderness initially for a while), so I think it's debatable whether starting later makes us more intolerant of it, probably the calibre and composition of the prog itself that determines how it affects us.

Also despite the initial HRT working brilliantly, and the current system working relatively well, I did (and still do) have one specific postmenopausal issue that HRT has never completely resolved, even today as I write.  That is labial irritation, a constant sticking pinching rubbing pulling sensation on the right labia, which drives me totally crazy - not painful per se but extremely and intrusively irritating on a constant basis.  The first lot of HRT resolved it to the point where I didn't really notice it, but still was unable to wear knickers (ever tried wearing sandpaper in your pants?  That's what it felt like  ).  Subsequent HRT's barely helped at all but at least now on pumps and prog (and a little extra help from Vagifem) it's a lot less intrusive and uncomfortable (but still no knickers!)

On balance I genuinely believe it's down to the quality and ingredient mix of the HRT that determines whether it works or not, rather than the length of time post menopause you start it.  I suppose some post menopause damage might be inevitable if it's too many years before the oestrogen gets topped up again (I'm thinking degenerative issues such as arthritis - joint and muscle pain - and possibly osteoporosis etc) but I for one have found it has so many benefits that I'll be fighting tooth and nail to stay on it for life.  Touch wood multiple times...

As an aside, I read in so many posts on here that women well past menopause are using cyclical HRT, which strikes me as odd that they'd want to keep on having regular bleeds when the continuous HRT removes all that palaver completely.  Is there a glaringly obvious reason for this that I am missing?

[Wrensong]

Hi Lamplighter, thank you very much for your sharing your history  .  Very interesting hearing you didn't start HRT until 5 years after final period & immediately found it resolved a lot of symptoms.  What an absolute pain that the Nuvelle that suited you so well was discontinued & that you lost the next couple of years trying to find a comparably effective substitute.  I'm pleased to know you're now doing fairly well on your new regimen & I see again it includes the Utrogestan that seems to be pretty much Marmite in terms of tolerance.  It's unfortunately been the worst of the lot for me, with truly horrendous side effects, whichever entrance I force it in through ! 

You asked why some women postmenopause choose sequential regimens & put up with the bleed.  There are 2 main reasons I think, the first being that progesterone & its synthetic equivalents make some of us feel extremely unwell (me included) so that it's imperative to reduce exposure to a minimum.  The second reason is that there's some suggestion in the medical literature that cyclical regimens may reduce the (anyway small) risks associated with progestogens.  An example is that cyclical use is thought to be better for breast health in that it allows the regular sloughing off of breast cells, reducing the potential for unhealthy proliferation.  I think some women also feel that continuing to have a cycle more closely mimics the way the body works in fertile years, so is more natural.  The counter argument is that it's unnatural to have period-like bleeds postmenopause!  But all that's off at a tangent, so let's not go any further down that avenue on this thread!

Still, the Nuvelle had progesterone in it and I had no side effects at all (apart from some breast tenderness initially for a while), so I think it's debatable whether starting later makes us more intolerant of it, probably the calibre and composition of the prog itself that determines how it affects us.

I'm less sure about the question of whether tolerance for progesterone may change as the years go by.  My first HRT, 3 years postmenopause, was Evorel Conti & I tolerated that fairly well for a couple of years, though got only partial symptom relief, both consequences possibly explained by the late discovery that I was getting poor absorption.  I changed to oestrogen-only patches at various doses up to 75mcg, with 3 trials of Utrogestan which all made me very unwell.  I then had a 15 month break without HRT.  In the last 2 years since starting again, I've tried every type of progestogen & had a 4th trial of Utrogestan, but my intolerance of all forms seems to have become more extreme.  The odd thing is that for most of my fertile years, breast pain/cysts aside, I didn't notice any ill effects from my own progesterone & was lucky never to have PMS.  That changed dramatically when peri began, the 2nd half of my cycle, however long, being when symptoms were at their very worst.

Have you tried testosterone to see whether it helps the labial irritation?  I don't mean applying it there  , just that there's some thought that it can help with GSM where dryness is a problem.  I've spent some time researching dryness in relation to menopause as mine is fairly widespread & has been especially problematic since BSO, with the marked drop in testosterone that follows.  There are studies linking the onset & exacerbation of dryness (Dry Eye Syndrome & Sjogren's especially) with androgen deficiency & I find Testogel & to a lesser extent the androgenic progestogens Norethisterone (in your old Nuvelle) & Levonorgestrel certainly help me with it.  Perhaps explains why your labial irritation was less troublesome on Nuvelle?  If you've not tried Estriol cream, a little of that sparingly applied to the vulva can also really help with comfort.  I use the weak 0.01% prep in addition to Vagifem (both now every night) & this combination originally at 5 nights a week was prescribed by a well respected NHS menopause clinic some years ago.

Like you, I'd hoped to stay on HRT for life, for symptom relief, osteopenia & the fact that as a skinny woman with no ovaries I worry about the future without E&T, but I'm at the end of a cul de sac as regards the progesterone problem & need to work out why during the E&T phase of my cycles I'm also now feeling less well than I'd expect.

Avalon, thanks so much for your post. Trying to respond in order & find I'm out of time for more this morning but will come back and reply to you properly later. 

[Lamplighter]

Hello again Wrensong and thanks so much for such an informative response 

How awful for you as regards reacting badly to progesterone in whatever form - it sort of begs the question why?  What is it about the stuff that so many women can't tolerate it, especially when it's an integral part of our body makeup in the first place.  I must say that if I had to come off HRT because of progesterone intolerance, I'd be seriously thinking about having a hysterectomy.  There must be some way of getting oestrogen back into our systems without the intolerance palaver.  Come on medics, do your research!

Had to go and look up E&T (thanks Mr Google), am I correct in assuming you mean Estrogen and Testosterone?  Does anyone know if testosterone could be some sort of substitute for progesterone?  I guess not or you'd be saying so, but worth asking.

Thanks also for the suggestion re testosterone - funnily enough the initial HRT I took completely resolved all the dry issues - eyes were really bad and then miraculously went back to normal, sadly not so this time.  I even had a test for Sjogren's, luckily came up negative.  Also every orifice including nose and mouth and ears and all the other unmentionables went dry as a desert and once again the Nuvelle resolved all that.  I'd like to think, as you point out, that it was the Norethisterone that did it but when they discontinued the Nuvelle it coincided with the shortage of HRT and the only similar product available was Kliofem (which ostensibly has identical ingredients to Nuvelle) but after nine months on that a lot of my symptoms were returning (in a sneaky subtle sort of way) and the labial irritation started getting bad again so I stopped HRT completely for a few months.  The prog part of Kliofem was also Norethisterone so that sort of negates that idea.  (Have also tried other combinations, eg Indivina and Evorel patches and Femoston, none of which did much of anything except give me different side effects.)

Funnily enough though I have a note in front of me written to myself after reading the forum last night telling myself to look up androgen deficiency and the use of testosterone as an adjunct for HRT - I have quite a helpful GP who may well consider prescribing it, though I'd need to have a lot more info about it to convince her.  I often wonder how women on here come to be taking it, are you offered it or have you researched it yourself and suggested it to your doctors?  What are the reasons for taking it?

I do in fact have some estriol cream still, having acquired quite a pharmacy in my search for relief of post menopausal symptoms, but when I used it, it didn't do anything except burn a bit (but then so did the vagifem, and now it doesn't) and dry out really quickly.  Will fish it out of the bathroom cupboard and give it another go - thanks again for the suggestion 

I'm so sorry you are having issues with HRT not working as well as it did initially - that must be very frightening as well as frustrating.  Stabbing in the dark here, but I wonder whether the cyclic nature of your regime might have something to do with it?  I don't know how the sequi systems work but I am guessing that during the prog phase, you don't take the oestrogen?  Perhaps the body objects to intermittent hormone replacement?  Just wild guessing here, it's a real puzzle (and worrying, as the obvious thing people might think is oh well yeah old age you know...  ) 

Finally a propos acronyms - excuse my ignorance but what is BSO and GSM?  As soon as you tell me I bet I'm going to be embarrassed, but no ask no find out 

All the best to you Wrensong xxxx

[Wrensong]

Hi Avalon, your story is so sad my heart goes out to you, but all credit to you for your resilience & spirit.  Is the situation re access to HRT in Australia improving at all do you think? 

That they tested your oestrogen level in 2014 & found it to be rock bottom, yet you were not prescribed HRT until 2019 makes little sense.  Why did they test if not minded to help you manage a deficiency?  I see like Kathleen, Dotty & I you were 3 years postmenopause before finally starting HRT but that you're not quite as far along.  I'm 9 years post & have been on mostly low dose HRT for only 4 of those 9 years, 2 x 2yr stints, with a 15 month gap between & another couple of enforced breaks of several weeks this time around. 
Just can't really work out what's going on with me, though I know progesterone is my enemy & pretty sure the thyroid issue is a spanner in the works.  So set up this thread wanting to get a feel for whether anyone thought our bodies might adapt to HRT more easily if we start it in peri & continue on through.

Can I ask in what way your sleep is still problematic & has it improved in line with the increase in oestrogen?  This is a major issue for me too & I really need to crack it.  You're still taking Provera so does that mean it's more tolerable for you now your oestrogen is higher?  I hope so, as I remember you felt pretty lousy on it, as I do.

I hope you manage to hang on to your doc.  Is he young enough to be practising for a good while yet?
Wx

[Wrensong]

Hi again Lamplighter, going back through your post in order.  I don't know why natural progesterone should cause such extreme problems for many of us, though adverse reactions to the synthetics make more sense.  Instinct is that Utrogestan is far too strong for me.  I tried a compounded lozenge at lower dose & felt less bad on it, but got no bleed & side effects were still bad enough that I didn't feel I could increase the dose in order to bring about the requisite bleeds.  I think in my case the thyroid condition is possibly complicating response to progesterone/progestogens.  The horrendous side effects are similar to those of having too much thyroid replacement & there is reference in the medical literature to progesterone having a (slight) potentiating effect on thyroid hormone.  My thyroid replacement includes a far more powerful hormone than thyroxine & I have a suspicion this may be a factor in the extreme response to progesterone.  And yes, I think the lack of stability on a cycle also isn't particularly compatible with the atypical thyroid condition.

You raise the issue of hysterectomy, yes it's under discussion, but has to be a last resort.  There is a risk of long term consequences I'm not comfortable about at present & I need to be confident I can get the non-prog components of my HRT working consistently better first.

Yes, sorry about my shorthand : by E&T I meant oestrogen & testosterone!

Does anyone know if testosterone could be some sort of substitute for progesterone?

I have vague memories of coming across research that found testosterone has some anti-proliferative effects on the endometrium, but don't quote me on that.  Would make sense though, given some of the synthetics are testosterone derived.

Yes, me too with the Sjogren's testing & like you dryness of eyes, nose, mouth, skin & GU tract.  I had BSO (removal of both ovaries & tubes - Bilateral Salpingo Oophorectomy  ) several years postmenopause & the pre-existing systemic dryness got markedly worse.  I wondered whether to do with the consequent substantial loss of testosterone which intact ovaries are said to go on producing in significant amounts into old age.   Hence the googling & heartsink confirmation that androgen deficiency is thought to be implicated in dryness inc Sjogren's, especially in women after oophorectomy.

My lovely Endocrinologist asked my GP to prescribe the testosterone (at my request).  She had not been asked before but was happy to do so.  A private menopause clinic I went to after BSO had also suggested prescribing it, as had the first meno specialist I ever saw (pre-BSO).  As I hadn't got my basic HRT right at that stage I'd deferred trying it but post-BSO the dryness was so bad I didn't want to delay any longer.  The usual indication for prescribing to women with intact ovaries is loss of libido & sexual function so you may have to cite those.  I think once ovaries have been removed it's generally easier to get hold of it, but not suggesting you go to that extreme !  If your GP is helpful I'd prepare your case & ask.

https://thebms.org.uk/publications/tools-for-clinicians/testosterone-replacement-in-menopause/

https://www.menopausedoctor.co.uk/media/files/newson-health---testosterone.pdf

https://www.newsonhealth.co.uk/news/calls-for-testosterone-to-be-licensed-in-uk-for-postmenopausal-women

I don't know how the sequi systems work but I am guessing that during the prog phase, you don't take the oestrogen?

With cyclical regimens we take oestrogen every day but progesterone for only part of each cycle.

Finally a propos acronyms - excuse my ignorance but what is BSO and GSM?

BSO as above!  GSM - sorry it's Genitourinary Syndrome of Menopause, the more fittingly comprehensive & now preferred term for what we used to call Vaginal Atrophy.

I hope you manage to find a way of improving the labial irritation.  Worth a retrial of a little Estriol thinly applied I'd say & yes, have a good read about testosterone.
Wx

[Lamplighter]

Wrensong thanks again so much for the comprehensive reply, and for taking the time to respond - everything you've said is really useful. 

I think like you I'll stick to using acronyms - BSO and GSM (aka VA) are a tad easier to remember!  The full names make it sound horrific (which I am guessing it is - well, both of them really  ).

I am really sorry to hear your history - sounds like you've got a barrel full of serious physical problems and that can't be easy with post menopausal issues to compound and confound everything as well.  Very kind and healing thoughts to you 

LL xxxx

[Wrensong]

Thank you Lamplighter, that's so kind of you but I'm actually way better than in perimenopause, fitter in some ways than many at my age & there is much I enjoy in life, so please don't be misled!
Wx

[Lamplighter]

I'm glad to hear that, but I bet it's not all sweetness and light all the same 

 

xx

[Wrensong]

Tbh I laugh more these days than I ever did in younger years & don't sweat the small stuff so much.  There was huge relief in getting through the peri years & like most of us by the time we get to this age, having overcome a few sizeable obstacles has brought a greater appreciation of life than I probably would have had if things had been plain sailing.  Thank you for the flowers all the same - a girl can never have too many of those  .

[Wrensong]

Hi again Avalon, thanks so much for your long, heartfelt post.  There is certainly nothing to forgive, your posts are always interesting & thought provoking & it's enlightening to learn from you how situations in our 2 countries differ.  Always enjoy your great SOH too, so please keep bringing your unique perspective to the forum.  Agree it's kinda wonderful that the solidarity of this forum extends worldwide - a stroke of genius on Dr Currie's part & I'm sure there are very many women grateful for that & to those who beaver away in the background to keep it running.

The persistent resistance of your doctors to considering menopause as cause of your symptoms is sickening to hear of.  That your insight & point of view were not respected, especially given your knowledge as a nurse, is shocking too.  You certainly have had your work cut out getting the help you need.  How draining that is & what resilience it needs to persevere.
Heartening though, that your current GP is so open to working with you  .  I do hope he stays.  Can't bear to feel I'm not treated as a partner in my care & do my best to bypass anyone who's made me feel powerless in the past.  I share your fear of losing my current GP, who's been so helpful, respectful & kind, albeit at a distance since joining the practice less than a year ago.  Have had some pretty good ones in recent years (& some less so in the past) but none of them stay long these days & without continuity of care, progress falters & the effort of imparting complex history time & again is stressful & wastes time in an overloaded system that often can't accommodate long enough consults to allow doctors & patients to create a rapport & get done what needs doing.

So good to hear though, that more recently, as your oestrogen has increased some of your horrible symptoms are improving  .  Hoping, given time for the extra Sandrena to work its magic, your joint pain will also get better.  Really good to have the update that you're managing to tolerate Provera better now.  I hope you can get your lining back within range long term as I remember how much, understandably, you wanted to avoid hysterectomy.

I share your anxieties about global events & yes, hard to sleep at night with all that's going on around us, near & far.  Can only hope the powers that be will get a grip on policy & that what needs to be done will not be met with intransigent resistance.

Thanks so much for the good wishes Avalon.  Sending more back over the ether to you with a hug & hope you'll keep in touch
Wx