Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Sage 🍃 on October 29, 2024, 12:41:58 PM
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https://www.thelancet.com/series/menopause-2024
Edited: This link is more specific than the previous one.
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I'll start. I agree woman deserve better.
Not sure I agree that menopause has been over medacalised. In fact, in my case, it took years of fighting, plus every test under the sun (at great cost to the NHS) before my GP would consider my issues are hormonal.
And, being in peri, with massive fluctuations and a very sensitive body, HRT does not work for me at this stage. No other 'medicine' has been offered.
I wish perimenopause was more medicalised.
This article makes it sound like we can all just embrace it and get on with it.
That's kind of what I've had to do, but at what cost? I'm off my work, I can't look after my elderly parent, I can't help my teens. I'm not functioning.
Plus - and this will be controversial, I'm sure, I believe that years and years of taking the pill (because, let's face it, that's chucked at us from our teens), has caused my body to be so sensitive to hormonal changes! With that in mind, I don't think we're comparing natural menopause with how natural meno used to be for previous generations.
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CrispyChick,
I suspect you only had time to read the Editorial.
The articles include 'An empowerment model for managing menopause', 'Managing menopause after cancer', and 'Optimising health after early menopause'.
If you are not interested in learning about managing menopause after cancer and early menopause, you could read at least 'An empowerment model for managing menopause' before starting the discussion. It's a descriptive review, not a techy or biased view of the menopause.
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CrispyChick,
I suspect you only had time to read the Editorial.
The articles include 'An empowerment model for managing menopause', 'Managing menopause after cancer', and 'Optimising health after early menopause'.
If you are not interested in learning about managing menopause after cancer and early menopause, you could read at least 'An empowerment model for managing menopause' before starting the discussion. It's a descriptive review, not a techy or biased view of the menopause.
Just quoting myself (double post). And to add that there are 4 (not 3) free articles, this one is also free and very useful for women in perimenopause 'Promoting good mental health over the menopause transition'.
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:'( oh. I feel told off for starting the discussion after only reading the editorial. ???
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Thanks for sharing!
I also disagree that menopause has been overmedicalised - I believe there are many women taking a cocktail of medications for multiple disparate symptoms and problems all stemming from hypoestrogenism.
My mum for example is on medication for high blood pressure, high cholesterol, arthritis and osteoporosis, and has a metal plate in her wrist - she thought hormone therapy was "unnatural".
I also think that citing the prevalence of a condition as a reason for not treating it is bonkers, eg menopause affects 50% of the population so we shouldn't treat it.
Death is also natural and affects 100% of people so should we not bother saving anyone's life from any cause?!
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:'( oh. I feel told off for starting the discussion after only reading the editorial. ???
I'm sorry if you feel that way. Editorials express the editor's opinion, and discussing opinions is a fruitless effort, given that every person is entitled to have an opinion, and that it can change after consideration of the facts. Discussing the facts themselves is what science is about.
At the risk of sounding like CLKD, would you care to reply in the other thread? This is a double post. ::)
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Thanks for sharing!
I also disagree that menopause has been overmedicalised - I believe there are many women taking a cocktail of medications for multiple disparate symptoms and problems all stemming from hypoestrogenism.
My mum for example is on medication for high blood pressure, high cholesterol, arthritis and osteoporosis, and has a metal plate in her wrist - she thought hormone therapy was "unnatural".
I also think that citing the prevalence of a condition as a reason for not treating it is bonkers, eg menopause affects 50% of the population so we shouldn't treat it.
Death is also natural and affects 100% of people so should we not bother saving anyone's life from any cause?!
You're welcome!
I understand your point of view, but one thing does not justify the other. 'Taking a cocktail of medications for multiple disparate symptoms and problems all stemming from hypoestrogenism' is an overgeneralisation. If multiple symptoms and problems have arisen solely from hypoestrogenism, which I don't think can be proven unless for medical conditions like premature ovarian insufficiency or surgical/chemical menopause, I doubt that any doctor would refuse oestrogen as a therapy. Most troubling symptoms occur in perimenopause when oestrogen levels fluctuate and therefore can't be due to 'hypoestrogenism'.
The conditions you mention (high blood pressure, high cholesterol, arthritis and osteoporosis) are multifactorial, they develop as a result of multiple genetic and environmental factors. Low oestrogen may contribute to these conditions, which doesn't mean they stem from hypoestrogenism nor that oestrogen therapy will control them all.
'I also think that citing the prevalence of a condition as a reason for not treating it is bonkers, eg menopause affects 50% of the population so we shouldn't treat it. Death is also natural and affects 100% of people so should we not bother saving anyone's life from any cause?!'
I don't think this is accurate, the editor is not saying that menopause should not be treated because it affects 50% of the population or because it is a 'natural' process, or are you referring to one of the articles? That's the problem with discussing opinions (editorial), they are not about specific facts, they are one interpretation of a complex subject involving many different facts.
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Thank you for posting this Sage.
This forum has gone from a 'menopause support' forum to a 'you must take HRT at all costs or you will suffer' forum.
As for the discussion about menopause being overmedicalised, I am firmly in the YES IT HAS camp. Now I'm not saying that as it's a natural process, we should all just get on with it. There will always be a small percentage of women who need assistance dealing with what they perceive to be hormonal symptoms. HRT is a choice after all, not a medical necessity - you won't drop dead if you don't use it.
Neither is it a panacea for all ills.
This bit jumped out at me and it says a lot:
The prospect of universal treatment of a large section of the female population is clearly a glittering commercial prize for the pharmaceutical industry
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I need to read this article, particularly the section around menopause and cancer ( which is pertinent to me).
It’s strange you should mention that HRT is a choice and we won’t drop dead if we don’t use it SundayGirl. That is exactly what a young male GP said to me, when I first raised the issue of HRT to him. I only asked for it because I couldn’t drive my car due to debilitating anxiety. That wasn’t a valid reason apparently! :o
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You asked for HRT just so you could carry on driving???
Anxiety stems from numerous causes not just hormones and can be a complex disease.
In this particular case, I think the GP was right.
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Women have been known to take their lives due to menopause symptoms :-\ :'(
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You asked for HRT just so you could carry on driving???
Anxiety stems from numerous causes not just hormones and can be a complex disease.
In this particular case, I think the GP was right.
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Yes I did! My periods stopped and anxiety, along with bladder problems, kicked in. They were my first symptoms. I needed to drive due to where I live. Having never suffered from anxiety previously, in my case, it was purely hormonal!
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Please could someone explain what "over medicalising of menopause" actually means? We hear this a lot and I'm not sure I understand what exactly it is supposed to mean in this context.
My anxiety appeared when I was peri and vanished as soon as I took HRT. I nearly quit my job, I'm the main breadwinner in our family, anxiety is a massive deal. Let's not be judgemental about the symptoms of other women, surely we're better than that.
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I think that some medics will keep prescribing - I remember many years ago that a friend moved her parent into a nursing home, some how all the meds were left behind. The new GP went through all the conditions and the parent ended up on 2 meds rather than several: because in order to counteract side effects, something had been prescribed to - counteract the side effects ::) and I think this is common in many specialities.
There was no joined up thinking with this parent over about 15 years .......... mayB due to short appt times, mayB simply not looking at the patient has a whole person ........ :-\.
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I developed anxiety at the very early onset of the menopause. It's very common and it often kicks in when progesterone tanks - progesterone goes west before oestrogen. I suddenly became terrified of driving on motorways and I also became claustrophobic and scared of flying, getting into lifts and getting stuck on the tube on the way to work. It was very real and very disabling. Fortunately I'm completely over it now and will drive any type of vehicle anywhere plus fly and get into lifts.
My parents' neighbour suddenly developed anxiety aged 45 with no history of it and I've heard of numerous other cases plus loads of women on here of course. It's no coincidence.
The menopause can cause a lot of damage if it goes untreated but a lot of women are in denial because they fear it and can't face it.
When medics talk about over medicalising the menopause are they talking about fobbing women off with antidepressants or whinging about having to prescribe and manage women on HRT?
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Seasidegirl, my understanding of over medicalising the menopause, is where the menopause is deemed to need “ treating”. Whether that be with HRT, anti depressants, or other interventions.
The notion that it can’t just be left alone, to let nature do its thing I guess.
But we know that many women seemingly sail through, whilst others struggle with debilitating symptoms.
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You asked for HRT just so you could carry on driving???
Anxiety stems from numerous causes not just hormones and can be a complex disease.
In this particular case, I think the GP was right.
Yes I did! My periods stopped and anxiety, along with bladder problems, kicked in. They were my first symptoms. I needed to drive due to where I live. Having never suffered from anxiety previously, in my case, it was purely hormonal!
Ah, more info. Apologies for assuming anxiety was your only symptom based on what you posted.
An excellent example of when medics dish out or don't prescribe correctly due to incomplete or inaccurate info. :)
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Please could someone explain what "over medicalising of menopause" actually means? We hear this a lot and I'm not sure I understand what exactly it is supposed to mean in this context.
My anxiety appeared when I was peri and vanished as soon as I took HRT. I nearly quit my job, I'm the main breadwinner in our family, anxiety is a massive deal. Let's not be judgemental about the symptoms of other women, surely we're better than that.
If by ‘in this context’ you mean the editorial, let’s see what the editor says:
‘commercial companies and individuals with vested interests have over-medicalised menopause’
In my interpretation, the editor is saying that some of the benefits of MHT have been overstated by some companies and individuals, by saying that symptoms during menopause, as ’a disease of oestrogen deficiency’, are the result of falling estradiol levels and hence should be treated by ‘replacing the missing hormones’ and that menopausal women without hormonal treatment are at a higher risk of developing osteoporosis, cardiovascular diseases, depression and dementia. These are overstatements because many women don’t fall into these categories, i.e. not all women are symptomatic during menopause (clarifying that peri and menopause are very different stages), and not all women are doomed to develop diseases (very complex multifactorial conditions) without exogenous estradiol.
(For some symptomatic women and for all women who have premature menopause, as a result of surgical/chemical menopause or premature ovarian insuficiency, MHT is a medical treatment and is not considered over-medicalisation.)
The editor uses the term again ‘But over-medicalisation of menopause and promotion of MHT as a panacea is unhelpful’. Panacea is a strong word, IMHO, but if you browse the internet, some people seem to believe that hormones are going to bring back their ‘old self’.
This is the editor’s opinion. One can or cannot agree with it entirely or in part. I do agree with some of the editor’s statements but not all of them. For example, ‘Menopausal women can be strong, healthy, and happy’. I don’t think anyone can be strong, healthy and happy, independent of gender or menopause status. These sort of terms are far from scientific, including ‘safe’. Nothing is safe in life, no one is happy or healthy all of the time. Life is complex and dynamic, it can’t be defined by static idealistic concepts.
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Thanks, Sage. Together with your comments, this is really useful. I came to the boards today a bit upset as (after 3 years) I finally have an appt to see an NHS meno gynae later. I feel so 'weird' because I can't, and would rather not, go back down the HRT route - it was abruptly withdrawn from me because of a sudden unexplained rise in blood pressure that wouldn't respond to treatment. For this reason, I was taken by the line:
"But over-medicalisation of menopause and promotion of MHT as a panacea is unhelpful and only serves to divide opinions further."
^^ That's the whole line (rather than a selective quote), and it says this panacea approach has been damaging for some women - i.e. those of us who've had to try and battle against the evangelical HRT mantras.
As it goes, I also agree with the sentiments expressed in the article about gender equity in research (so calling for more unbiased / not funded by those who stand to gain research around the menopause) and similarly that, given menopause is a sex-based health condition, it should be covered under the Equality Act 2010 and adjustments made at work. These are political statements. In other words, the 'over-medicalisation and promotion of MHT as a panacea is unhelpful' because it robs women of the (political) protections they might otherwise enjoy during this time. Ergo, struggles in employment are a direct result of medicalisation, i.e. it's the problem not the solution. So disappointing for those of us without access to HRT as we're expected to suffer in silence.
With regard to the MH component, which seems so often to be classed as a symptom and only 'curable' with HRT, I was interested by the point Mary G made:
"I suddenly became terrified of driving on motorways and I also became claustrophobic and scared of flying, getting into lifts and getting stuck on the tube on the way to work. It was very real and very disabling. Fortunately I'm completely over it now and will drive any type of vehicle anywhere plus fly and get into lifts."
^^ I had this, but from my early 30s and (unless I had the longest peri in the world) it was nothing to do with menopause and entirely connected to trauma. It's odd, because it's so specific, a phobia of motorways, flying and claustrophobia associated with enclosed spaces - most commonly lifts and public transport especially the tube. After six years in weekly face-to-face therapy (minus HRT) it's mostly resolved. In my experience, it was a combination of factors all related to a kind of 'no exit fear'. Once again, the 'over-medicalisation and promotion of MHT as a panacea [was] unhelpful' to me because that's not what helped me, or could ever have helped me. And yet I see women routinely dismissing mental health interventions as somehow not taking their symptoms seriously. This is also a political issue, as it's much cheaper to get everyone on the pills than it is to meaningful talking therapies.
Finally, in relation to the above, this bit: "We need to send a realistic, balanced message to women and to society: menopause does not herald the start of a period of decay and decline but is a developmental life stage that can be negotiated successfully." Yes, I changed career at the age of 52 and became a teacher. Madness. I couldn't even stay vertical for a whole day at that time, I thought I had early onset dementia (bad brain fog), struggled to walk at anything approaching a normal pace, mourning my kids leaving home, etc. I honestly believed I was dying, both physically and emotionally, and so thought 'what the hell'. Four years on and I'm thriving. This isn't a message we see very often.
In conclusion, yes, we need sensible conversations and political solutions to medical problems.
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So how did you go from 'feeling like dying' elkwarning to 'thriving'? In 4 years?
Did you wait it out and it got better?
Did you take alternative treatments?
Was this the time you were on Hrt?
Or was this when you were treated for autoimmune stuff (as mentioned in other threads)?
This is the problem for me. How do you 'get better' when feeling like you are dying on a daily basis?
It's also strange that many in this thread are calling this so called 'medicalisation' and so called panacea for HRT - when, across this forum, woman are complaining time and time again of being ignored by their GPs and their symptoms belittled.
And, I'll probably get in trouble again for not reading the article. But quite frankly, feeling as bad as I do at this stage in my life, words dont help me.
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Thanks, Sage. Together with your comments, this is really useful. I came to the boards today a bit upset as (after 3 years) I finally have an appt to see an NHS meno gynae later. I feel so 'weird' because I can't, and would rather not, go back down the HRT route - it was abruptly withdrawn from me because of a sudden unexplained rise in blood pressure that wouldn't respond to treatment. For this reason, I was taken by the line:
"But over-medicalisation of menopause and promotion of MHT as a panacea is unhelpful and only serves to divide opinions further."
^^ That's the whole line (rather than a selective quote), and it says this panacea approach has been damaging for some women - i.e. those of us who've had to try and battle against the evangelical HRT mantras.
As it goes, I also agree with the sentiments expressed in the article about gender equity in research (so calling for more unbiased / not funded by those who stand to gain research around the menopause) and similarly that, given menopause is a sex-based health condition, it should be covered under the Equality Act 2010 and adjustments made at work. These are political statements. In other words, the 'over-medicalisation and promotion of MHT as a panacea is unhelpful' because it robs women of the (political) protections they might otherwise enjoy during this time. Ergo, struggles in employment are a direct result of medicalisation, i.e. it's the problem not the solution. So disappointing for those of us without access to HRT as we're expected to suffer in silence.
With regard to the MH component, which seems so often to be classed as a symptom and only 'curable' with HRT, I was interested by the point Mary G made:
"I suddenly became terrified of driving on motorways and I also became claustrophobic and scared of flying, getting into lifts and getting stuck on the tube on the way to work. It was very real and very disabling. Fortunately I'm completely over it now and will drive any type of vehicle anywhere plus fly and get into lifts."
^^ I had this, but from my early 30s and (unless I had the longest peri in the world) it was nothing to do with menopause and entirely connected to trauma. It's odd, because it's so specific, a phobia of motorways, flying and claustrophobia associated with enclosed spaces - most commonly lifts and public transport especially the tube. After six years in weekly face-to-face therapy (minus HRT) it's mostly resolved. In my experience, it was a combination of factors all related to a kind of 'no exit fear'. Once again, the 'over-medicalisation and promotion of MHT as a panacea [was] unhelpful' to me because that's not what helped me, or could ever have helped me. And yet I see women routinely dismissing mental health interventions as somehow not taking their symptoms seriously. This is also a political issue, as it's much cheaper to get everyone on the pills than it is to meaningful talking therapies.
Finally, in relation to the above, this bit: "We need to send a realistic, balanced message to women and to society: menopause does not herald the start of a period of decay and decline but is a developmental life stage that can be negotiated successfully." Yes, I changed career at the age of 52 and became a teacher. Madness. I couldn't even stay vertical for a whole day at that time, I thought I had early onset dementia (bad brain fog), struggled to walk at anything approaching a normal pace, mourning my kids leaving home, etc. I honestly believed I was dying, both physically and emotionally, and so thought 'what the hell'. Four years on and I'm thriving. This isn't a message we see very often.
In conclusion, yes, we need sensible conversations and political solutions to medical problems.
Your fourth paragraph really resonates with me. Travelling to Australia post lockdown with husband and two young children, less than a year after losing my mum, I had a massive mental health deterioration. The GP there pushed and pushed me to take hrt, saying it was peri fluctuations making me so terrified of everything. I tried and failed with two pumps of gel, and ended up in a worse state than before. It was only getting back to the UK, 14 months of worse and worse anxiety and everyone telling me it was just hormonal and natural (and a number of clinicians telling me to up the estrogel) that I ended up seeing a private psychiatrist who got me on the correct medication (and a toolkit of ad hoc for when needed) and properly sorted out a diagnosis of complex ptsd and ocd triggered by trauma, that I started getting better. I stopped hrt in April, started with the psychiatrist the same month and am still off hrt and doing so much better. Still in peri but hrt was not the right answer for me as I was having too many fluctuations. I still have blips at the end of my (still fluctuating) cycle, but they now last 1-2 days rather than being in a black hole for most of the time. I do think hormones play a part but hrt isn't the only answer and I think women need to be empowered to make informed choices about what route to take. I also think this needs to be enshrined in law with menopause a protected characteristic.
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So how did you go from 'feeling like dying' elkwarning to 'thriving'? In 4 years?
Did you wait it out and it got better?
Did you take alternative treatments?
Was this the time you were on Hrt?
Or was this when you were treated for autoimmune stuff (as mentioned in other threads)?
This is the problem for me. How do you 'get better' when feeling like you are dying on a daily basis?
It's also strange that many in this thread are calling this so called 'medicalisation' and so called panacea for HRT - when, across this forum, woman are complaining time and time again of being ignored by their GPs and their symptoms belittled.
And, I'll probably get in trouble again for not reading the article. But quite frankly, feeling as bad as I do at this stage in my life, words dont help me.
I'd be interested to know what helped too. But also think that nobody really looks further than 'oh its meno, you need estrogen' in terms of helping with such symptoms. Either that or bog standard anti depressants without any real thought to a diagnosis and tailored treatment plan. It's only if you can go private and pay for things like additional testing (non conventional stuff) that you can get really tailored help. It's a shame this isn't available on the NHS and the only two options are hrt or ssri meds.
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Please could someone explain what "over medicalising of menopause" actually means? We hear this a lot and I'm not sure I understand what exactly it is supposed to mean in this context.
They mean treating it like a medical condition or disease ie prescribing replacement for the lost hormones as with diabetes or hypothyroidism, rather than a natural process that doesn't require treatment. The same debate is sometimes held around pregnancy and birth. Unfortunately in both cases it is women who pay a high price when nature is left to take its often cruel course.
My personal view is that whilst menopause is universal if women live long enough, it is a pathological state with a multitude of undesirable health consequences. I know others hold different views and that's fine.
If anyone lives long enough, similar to a car or other appliance, some part or other will pack in eventually, and I personally choose to get it replaced rather than limp along without it.
I would much rather take replacement sex hormones than treat each menopausal symptom or consequence separately, with osteoporosis medication, sleeping pills, antidepressants, beta blockers for palpitations, oxybutinin for incontinence, multiple courses of antibiotics for UTIs, statins for high cholesterol etc.
That's the real overmedicalisation in my view.
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bombsh3ll Genuine question
What would you do, IF you could not take the hormones you needed to treat your symptoms?
So in my case, I have metastic BC ( hormone fed). If you developed something like this, where hormone therapy was dangerous and you were on hormone blockers, what approach would take?
I ask because short of taking all those medications you have listed, I feel entirely stuck.
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I'm so sorry you're in that situation Nas, and other women who find themselves there too.
I was only speaking about my own personal approach and not suggesting what others whose medical history, goals or values may differ from mine should do.
Your question is something I have given a lot of thought over the years as a non carrier within a BRCA family.
I am in the extremely privileged position of having been able to get risk reducing mastectomies at 29, and when genetic testing later became available I learned I was negative for the gene, but if it did happen to me, first off I would explore the possibility of taking tamoxifen as my "estrogen" as it is a SERM with some estrogenic activity especially on bone and heart health, even if it were not my oncologist's first choice.
If that wasn't possible, then depending on my symptoms and prognosis, I would probably be in the camp who would prioritise quality of life above length of life. I would of course consider what was the lowest risk option, be that bazedoxifene (would seek abroad if necessary) raloxifene or tibolone. Even CEE has been postulated to have SERM like activity on the breast so that might be on there too.
Of course this is a very personal choice and I am not for one moment suggesting it is right for everyone, or even that I wouldn't change my mind if I were actually faced with that, but I do believe people should have the autonomy to choose quality of life over potential length of life where estrogen (or any other medical treatment) is concerned.
Absolutely I am glad that other symptomatic treatments exist for those who can't or choose not to take hormones, however I am concerned that many women without contraindications are needlessly scared of estrogen and instead end up on less beneficial treatment.
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Many thanks for your honest and detailed reply bomb.
My brain is rapidly steering towards quality over quantity of life now and this is indeed the conversation that I will be having with my oncologist tomorrow.
Let’s say your cancer was contained to one area in the first instance and was responding well to treatment. But quality of life has been shot to bits ( surgical menopause coupled with AI). How would you respond to medics who just can’t and won’t endorse any hormonal ( or hormonal type ) treatment at all. In other words you are banging your head against a brick wall.
Feel free not to answer because I am thinking aloud, but have no way of discussing this without being shut down by the medics.
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NAS, I'm really sorry for the position you find yourself in.
I had DCIS agreed 46 7 years ago. Found early on family history screening as my mum died aged 46 of BC.
I had a first mastectomy as the DCIS was too extensive to get with the three wide local excisions that they tried.
I then had a second risk reducing mastectomy on the other side as the pathology of the first side indicated greater risk in the second. I am BRCA/BRCA2 non carrier.
I stayed away from HRT after i became peri in 2016 until this year when I just couldn't cope any longer and I made the decision to prioritise quality of life.
It's a different decision to yours and I'm grateful that my mastectomies mean that my BC risk is likely lowered. They're is so little evidence though and that makes everything so much more difficult :'(
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Thanks Seasidegirl,
If there was ever a moral dilemma, it is this. Trapped between a rock and a hard place!
I am sorry to hear of your mum. Sadly this disease is still taking far too many women and although treatments are plentiful, they remain brutal.
I too had the mastectomy ( and the chemo ) but it returned.
As you rightly say, evidence is in short supply and we are left having to make tough decisions.
I will mull it over with oncology. But we know that their role is to aim to preserve life.
Thanks again.
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Many thanks for your honest and detailed reply bomb.
My brain is rapidly steering towards quality over quantity of life now and this is indeed the conversation that I will be having with my oncologist tomorrow.
Let’s say your cancer was contained to one area in the first instance and was responding well to treatment. But quality of life has been shot to bits ( surgical menopause coupled with AI). How would you respond to medics who just can’t and won’t endorse any hormonal ( or hormonal type ) treatment at all. In other words you are banging your head against a brick wall.
Feel free not to answer because I am thinking aloud, but have no way of discussing this without being shut down by the medics.
My heart goes out to you.
I think there is a real imbalance of power within healthcare, and I do not think one person (or even a MDT) should be in a position of such power to be able to condemn another human being to a life of misery and suffering.
Living is about more than just not being dead (a conversation that I have had with my cardiologist who was reluctant to put a pacemaker into me on the grounds that I wasn't dead without it - I sure as hell wasn't living with a heart rate of 42!)
The evidence that taking estrogen even makes a significant difference to the risk of breast cancer progression or recurrence is sketchy at best - some studies indicate yes, others no. Estradiol has also historically been used to TREAT breast cancer.
If I were in your shoes, I would firstly try to seek out a provider who has publicly advocated for women to be given autonomy in terms of estrogen/breast cancer.
Louise Newson is one of them, there is also Dr Tina peers, a UK menopause doctor who has had breast cancer twice and takes HRT herself. She has a couple of videos on YouTube if you are interested.
Failing that though, if I had made an informed decision to take hormone therapy and couldn't get it honestly, I'd go somewhere else that didn't have my medical records, abroad if necessary, and not disclose the cancer.
I'm not suggesting this is what you should do, but it's what I'd do. I'd do whatever I needed to - ask a friend or relative to buy it in their name etc. and I wouldn't feel guilty, because I'd regard the quality of my remaining life as paramount.
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Nas, you have been left in a terrible situation, what does your oncologist think you should do? What do they suggest and how do they think you should cope with debilitating menopause symptoms? At the very least they should be able to sanction the new non HRT drug.
The late Professor Studd prescribed HRT for women who had a history of BC (his clinic in Wimpole Street is still going strong) and if you Google it, you will find stuff he has written on the subject. I managed to dig this out which I remember reading at the time:
https://www.telegraph.co.uk/health-fitness/body/ive-had-breast-cancer-but-it-wont-stop-me-taking-hrt/
Can you remind us which HRT regime you were using?
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Menopause is a natural progression and not a disease! However, it is obvious from these websites and Davina etc. talking about symptoms, that many suffer from a) symptoms and b) from un-educated medics.
Those that apparently 'sail' through either suffer in silence because they don't appear on MM forums or have GPs with knowledge, or like myself, have few bothersome symptoms. I arrived here from the Ovacome magazine many years ago, knowing that menopause was the end of periods with a few hot flushes.
As another aside I do wonder whether the NHS believes that women either don't have bothersome symptoms or that they deal well with using alternatives from H&B for example so 'there's no need' for research etc.. :-\
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Thanks bomb, again, I appreciate your input, particularly as I feel so unheard (along with many) in real life.
The words which struck a chord, were about living being more than just being not dead. I could not agree more and I am bitter that my quality of life is just not considered. The medics knew I was on HRT for a reason and had seen a MS who agreed that I could be prescribed HRT based on my symptoms. Before the hysteretomy, why did they not think what it was going to be like once in surgical menopause with added hormone blockers? It is like adding a flame to petrol!
You have given me a huge plate of food for thought and for that, I thank you and will go away and think long and hard about how I wish to proceed with this.
Mary G, the oncology team would be very happy for me to succumb to the huge and wide range of anti d's, along with higher doses of over active bladder medication. In fairness to my own oncologist today, she did admit that she does not know how to help me. I have referred myself to a NHS meno clinic because the new non hormonal drug which I am on for vasomotor symptoms only, is not yet available on the NHS and comes at a handsome price of £186 for 3 months supply, which is unsustainable for me going forward.
Thankyou also for the link and other information. Again I will have a good read and try to make an informed choice on how I want to proceed. My reality is however, that hormones feed my cancer. But just to feel normal for even a month, would be so great. I often dream of how it would feel; no bladder issues, not having to pay for private meds, having an ounce of a libido again, being stable mood wise and so it goes on. I am also acutely aware that there are women on HRT who are yet to be symptom free and women who have given up and have found alternative interventions.
Anyway, we all have our struggles and that it why so many post on MM.
Time for reflection now :)
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Nas, two thoughts from me....
I was prescribed HRT via the Newson Clinic and for the first time felt "heard". They have a list of GP's who have additional expertise with Breast Cancer. Again I recognise that you are in a different place to me.
Have you spoken to Macmillan regarding the cost of private meds? I wonder if there is any funding. Ditto do you have a local cancer support group who may be able to help?
Much love to you xx
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Thanks Seasidegirl,
Today I did look at the criteria for the Macmillan grant, but on this occasion, I do not meet the criteria (it is means tested).
The oncologist did tell me that a new clinic was opening up, near to where I am treated and it is specifically aimed at women, like myself (and probably lots of others). This won't be until next year though. But I guess it does mean that they are recognising that this is a problem which isn't going to go away any time soon.
I also think that one of the issues is, that few women who have had a primary BC diagnosis, actually take HRT (and if they do, it is under strict lock and key held by a MS). I was always told from the outset " lowest dose possible" and my argument back was always "well what if the lowest dose possible, doesn't deal with symptoms?" I may as well be taking chocolate buttons or squirting myself with shower gel! Then of course, the womb cancer reared it's ugly head, followed by the metastic BC and that was it. I am cross because at some point, they knew the shi* was going to hit the fan, it was just a case of when! They knew that I wasn't on HRT for the fun of it and that I couldn't function without it. Now that moment has happened, no one wants to know!
I know there are women out there like me because I am part of a couple of social media groups. But it is rarely raised because as you rightly mention Seasidegirl, I/the ladies on the social media groups, are in a different situation to you now.
It is a difficult one and an area which just isn't discussed enough and as much as it may "terrify" some women and fuel their health anxiety further, it is a real issue which exists.
Thanks again Seasidegirl :)
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I thought that MacMillan donated £250.00 on request, regardless :-\
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Is duavee (premarin and bazedoxifene) an option for you?
It is seemingly anti-estrogenic on breast tissue.
It may only be available abroad but a couple of months' supply of fezolinitant would probably cover travel etc. or you could get a private script here and get it shipped.
I did 2 rounds of IVF abroad and the logistics of meds and prescriptions were do-able (although that was pre-brexit)
I know bazedoxifene is being explored within the BRCA 1 +2 community. Unfortunately it only comes with premarin at present for commercial reasons (shifting the premarin that nobody now wants). But I'd still take it.
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So how did you go from 'feeling like dying' elkwarning to 'thriving'? In 4 years?
Did you wait it out and it got better?
Did you take alternative treatments?
Was this the time you were on Hrt?
Or was this when you were treated for autoimmune stuff (as mentioned in other threads)?
This is the problem for me. How do you 'get better' when feeling like you are dying on a daily basis?
It's also strange that many in this thread are calling this so called 'medicalisation' and so called panacea for HRT - when, across this forum, woman are complaining time and time again of being ignored by their GPs and their symptoms belittled.
And, I'll probably get in trouble again for not reading the article. But quite frankly, feeling as bad as I do at this stage in my life, words dont help me.
Firstly, Nas, I do hear you and I'm sorry that I don't have any answers. Bit of an odd suggestion, but have you tried searching specifically for research from Israel. Big BC awareness there.
Penguin, I feel like I understand your comments. Thank you for sharing with honesty.
To answer the questions:
Autoimmune stuff was before.
Felt like I was losing my mind and myself. Nothing ever got better. For example, I thought cycling to work would help me get fitter. It was hard at first and everyone said it would get easier after 3 months. It never got easier. I did it every day for 3 years. It was agony. I sweated like a pig. I kept putting weight on. I was permanently exhausted. I hated everything and everyone around me. I had no life and was hanging on by my fingernails at work. My idea of a good time was to spend while days in bed.
I went on HRT and wanted it to work so badly that I ended up believing it was, but my mental health was still deteriorating. I was getting into all sorts of problems at work, couldn't see eye to eye with my colleagues - even though it had all been fine for years before. I was becoming paranoid. Couldn't stand the sight of my husband. Constantly eaten up by anxiety. And my god, the rage. My blood pressure sky rocketed and they couldn't get it under control. HRT was withdrawn by the doctor. I went cold turkey.
A friend suggested I see a herbalist, so I did. I took those tinctures for weeks at a time. Another friend pointed me in the direction of a therapist and I found myself in weekly sessions.
Fast forward a few months and COVID hit. Suddenly I found myself at home. All of my inner turmoil was being played out in the chaos of the world around me. It was curiously comforting to watch everyone else experience a bit of my craziness, and something just clicked.
At first it was doing couch to 5k (speedy walking style) in deserted streets. Then I was eating better because it was no longer buried mouthfuls at my desk between interruptions. I got to know my husband again and realised I quite liked him. Crucially, I saw a pharmacologist, in May 2020, in a hospital overrun with COVID calculator. He took my blood pressure, found it was in normal parameters, and told me to stay there hell out of dodge and figure out what I wanted to do with my life that would make me happy and healthy.
I decided to restrain to be a teacher. All very spur of the moment, but everything was so bonkas at the time, it felt like I could be mad and weird and no one would bat an eyelid. Then I pushed the whole thing further at the point I decided to get my full motorbike licence - even though I was terrified of riding and had been trying to do this for years.
A much shorter answer is that suddenly I stopped being scared of dying because there was so much death around me. Something in me decided that I wanted to live, and this energy was totally propped up by my therapy.
I still have weekly therapy. I'll probably be in therapy for another 5 years. That support has also helped me fight for recognition of my other needs. I'm now NHS diagnosed as autistic with OCD and CPTSD. This opens doors, e.g. I get to receive dentistry via the special care dental service, I have adjustments at work, my therapy (although technically private) is funded.
As it goes, I do still have courses of treatment from the herbalist from time to time - most recent because I thought my energy levels were a bit haywire.
Sorry for the essay, but yeah, my breakthrough was finding two women (therapist and herbalist) who actually sodding well listened to me, and the value of their input was confirmed by a medical doctor (the pharmacologist). None of this happened overnight.
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Nas, as suggested Duavive might be worth a try. I tried bazedoxifine with two pumps of Oestrogel years ago as an experiment but I had breakthrough bleeding because it was too much oestrogen for the bazedoxifine to cope with. I noticed that my breasts felt empty while taking it so it must divert oestrogen away from that area as well as the womb of course.
I bought a box of Duavive but I didn't bother trying them because I instinctively knew they would be too weak for me back then but fortunately I managed to flog them to someone else because they were quite expensive at over €35.00.
I would say it's worth considering.
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Mary, it says Duavive is for women with a uterus? I’ve had a hysterectomy. Is it prescription only from GP?
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Nas, in the UK, Duavive would be prescription only like all HRT.
I found this which concludes that Duavive is safer on the breast than oestrogen/progesterone but the figures are negligible:
https://pmc.ncbi.nlm.nih.gov/articles/PMC10389232/
I doubt it is highly dangerous to take Duavive without a womb but I would check first. If it is declared to be unsafe for women without a womb, I would ask why. The SERM will divert oestrogen away from the breasts (and the womb if you have one) and make it safer in theory.
Have you tried searching for a menopause specialist who specialises in helping women with BC?
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Mary, I did find a MS who was happy to prescribe with my history of primary BC. Now that I have secondary BC and on hormone blockers, it’s a non starter. The name of the game is to block all oestrogen from entering my body.
In truth, I’m going to have to suck it up. If this cancer goes AWOL from my lung, I’m on borrowed time!
That said, quality of life and all that.
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So how did you go from 'feeling like dying' elkwarning to 'thriving'? In 4 years?
Did you wait it out and it got better?
Did you take alternative treatments?
Was this the time you were on Hrt?
Or was this when you were treated for autoimmune stuff (as mentioned in other threads)?
This is the problem for me. How do you 'get better' when feeling like you are dying on a daily basis?
It's also strange that many in this thread are calling this so called 'medicalisation' and so called panacea for HRT - when, across this forum, woman are complaining time and time again of being ignored by their GPs and their symptoms belittled.
And, I'll probably get in trouble again for not reading the article. But quite frankly, feeling as bad as I do at this stage in my life, words dont help me.
Firstly, Nas, I do hear you and I'm sorry that I don't have any answers. Bit of an odd suggestion, but have you tried searching specifically for research from Israel. Big BC awareness there.
Penguin, I feel like I understand your comments. Thank you for sharing with honesty.
To answer the questions:
Autoimmune stuff was before.
Felt like I was losing my mind and myself. Nothing ever got better. For example, I thought cycling to work would help me get fitter. It was hard at first and everyone said it would get easier after 3 months. It never got easier. I did it every day for 3 years. It was agony. I sweated like a pig. I kept putting weight on. I was permanently exhausted. I hated everything and everyone around me. I had no life and was hanging on by my fingernails at work. My idea of a good time was to spend while days in bed.
I went on HRT and wanted it to work so badly that I ended up believing it was, but my mental health was still deteriorating. I was getting into all sorts of problems at work, couldn't see eye to eye with my colleagues - even though it had all been fine for years before. I was becoming paranoid. Couldn't stand the sight of my husband. Constantly eaten up by anxiety. And my god, the rage. My blood pressure sky rocketed and they couldn't get it under control. HRT was withdrawn by the doctor. I went cold turkey.
A friend suggested I see a herbalist, so I did. I took those tinctures for weeks at a time. Another friend pointed me in the direction of a therapist and I found myself in weekly sessions.
Fast forward a few months and COVID hit. Suddenly I found myself at home. All of my inner turmoil was being played out in the chaos of the world around me. It was curiously comforting to watch everyone else experience a bit of my craziness, and something just clicked.
At first it was doing couch to 5k (speedy walking style) in deserted streets. Then I was eating better because it was no longer buried mouthfuls at my desk between interruptions. I got to know my husband again and realised I quite liked him. Crucially, I saw a pharmacologist, in May 2020, in a hospital overrun with COVID calculator. He took my blood pressure, found it was in normal parameters, and told me to stay there hell out of dodge and figure out what I wanted to do with my life that would make me happy and healthy.
I decided to restrain to be a teacher. All very spur of the moment, but everything was so bonkas at the time, it felt like I could be mad and weird and no one would bat an eyelid. Then I pushed the whole thing further at the point I decided to get my full motorbike licence - even though I was terrified of riding and had been trying to do this for years.
A much shorter answer is that suddenly I stopped being scared of dying because there was so much death around me. Something in me decided that I wanted to live, and this energy was totally propped up by my therapy.
I still have weekly therapy. I'll probably be in therapy for another 5 years. That support has also helped me fight for recognition of my other needs. I'm now NHS diagnosed as autistic with OCD and CPTSD. This opens doors, e.g. I get to receive dentistry via the special care dental service, I have adjustments at work, my therapy (although technically private) is funded.
As it goes, I do still have courses of treatment from the herbalist from time to time - most recent because I thought my energy levels were a bit haywire.
Sorry for the essay, but yeah, my breakthrough was finding two women (therapist and herbalist) who actually sodding well listened to me, and the value of their input was confirmed by a medical doctor (the pharmacologist). None of this happened overnight.
Thank you for sharing, it’s a very powerful story and shows the importance of taking a holistic view. You will make a fantastic teacher!
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Thank you Elkwarning.
A very detailed account :).
I'm so glad you've come out the other side, of not just the meno, but the place if left you in.
There is hope for us all. I'm seriously considering the AD route now as, despite feeling ill all the time, I know I'm fixating on it and maybe if I get to a place where I don't care as much, that would help.
Thanks. X
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Nas, do have a think about Mirtazapine. If you can get some good sleep and sort out the anxiety everything else will be easier to cope with. x
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Nas, do have a think about Mirtazapine. If you can get some good sleep and sort out the anxiety everything else will be easier to cope with. x
My GP prescribed this for sleep when I was trying to stay off HRT. I didn't take it as I had too many other symptoms that it wasn't likely to resolve. GP has had a cancer and her daughter has had breast cancer, she's quite good at helping those who need to avoid HRT.
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Thanks Gnatty, you are right.
I wanted to keep the number of drugs I take to a minimum, but needs must I guess. X
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Thanks Gnatty, you are right.
I wanted to keep the number of drugs I take to a minimum, but needs must I guess. X
Nas you could always ask for melatonin for sleep if you wanted to try something more natural first. My anti depressant can cause sleep problems so I take 2mg slow release melatonin at night quite often amd it helps both with getting to sleep and staying asleep. Gnatty is right about sleep helping anxiety. I get 7-8 hours now and, on the rare nights I don't, can really feel the difference.
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Penguin, can I ask where you get the melatonin from? Does your GP prescribe? My oncologist wasn’t convinced it was a good option ( based on lack of research and evidence). However, she is not me and I would be willing to trial anything.
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Penguin, can I ask where you get the melatonin from? Does your GP prescribe? My oncologist wasn’t convinced it was a good option ( based on lack of research and evidence). However, she is not me and I would be willing to trial anything.
I get it from private psychiatrist, however he writes to GP and they have noted on my file that they will take over prescribing after I've been on it 3 months. It's past three months now so I assume that means I can get it from nhs although haven't yet tried. NHS can prescribe it for sure. 2mg slow release.
However if not you can get it online from biovea as that is where I get my son's from, as his adhd medication sometimes make sleep difficult. The providere have confirmed they'd prescribe it for him but they can only issue the tablets and he can't swallow them so we get the gummies online instead. They are not expensive at all.
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Thanks Penguin, so a 2mg slow release melatonin gummy, could work in the same way as a tablet? I will ask again re: the melatonin and in the meantime, check out Biovea.
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Thanks Penguin, so a 2mg slow release melatonin gummy, could work in the same way as a tablet? I will ask again re: the melatonin and in the meantime, check out Biovea.
I'm going to pm you, look out for it x
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Thanks. I replied x