Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Dragonladee on August 01, 2025, 10:37:42 AM
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Hi all, first time on here.
I am 66 and have had a rubbish time over the past 25-30 years - who would be a woman???
I was brought up to think you went through "the change" and that was about all I knew. I had never heard of perimenopause, so after years of heavy prolonged periods (sometimes 14 days), around 2002 I noticed a large lump in my lower abdomen when laying on my back, scared, I went to the Dr and he examined me and his reaction was "my God, what are your periods like?". Shocked at his reaction I told him they were heavy and prolonged and he said I had large fibroids. I had them checked at hospital and was told I could have a hysterectomy, or wait it out as I should be getting near to menopause and they would likely shrink or disappear. I opted for waiting it out.
So fast forward a few years and November 2013 I had my last period, and the syptoms started, slowly at first, a bit of weight gain around the middle, hair loss for which I was prescribed iron and it worked a treat, itchy skin, heart flutters / missed heartbeats (this was scary, but had it checked a few times and they couldn't find anything wrong) - although this was never linked to menopause by the Drs. The problems kept coming, more weight gain, swollen ankles which never went down, joint pains, spots, dry vagina and zero libido, then the hot flushes and the sweats started and they have been the bain of my life.
I recall once going to see an older female Dr and I had read that it was best to take a list with you if you had multiple issues, so I did and I was told rather sharply, like a naughty schoolgirl, "put your list away and just tell me!". Never had much sympathy from Doctors, although I think things are changing now. I asked her for HRT and she said she didn't want to go down that route, (I did, but obviously I didn't matter) so I persevered and tried to do it on my own.
My biggest problems over the past 3 years or so have been the flushing which happened many times a day and when around people it was embarrasing and uncomfortable, and the sweating - my body not so much, but my head - wow, that drips, my hair gets saturated and it drips down my neck, my face and into my eyes and I got tired of it, every summer was unbearable until it started creeping into the colder months. So last September I went to see a private Menopause specialist who prescribed me estradot patches and utrogestan. I felt like I had been given the magic treatment, but 1 year on, it is no different, the head sweating has been unbearable this year, so thinking about coming off the HRT as it doesn't seem to have any effect on my symptoms.
I have just been discussing with a (more understanding) Dr, and she thinks that clonidine may help to control body temperature, so just waiting to get that prescription.
I am beginning to think this will never end, as I have friends who have had a few months of discomfort / symptoms and then they are all clear, I am at nearly 12 years and each year feels worse. Sorry for the long story, but is anyone the same or similar?
Thank you for any replies
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:welcomemm: will copy, paste and respond. Bare with me ;-)
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Hi all, first time on here.
I am 66 and have had a rubbish time over the past 25-30 years - who would be a woman??? - that's a long while 2 B suffering!
I was brought up to think you went through "the change" and that was about all I knew. The Change - does what it says on the tin, loss of periods and a few hot flushes. However!
I had never heard of perimenopause [same for most of us], so after years of heavy prolonged periods (sometimes 14 days), around 2002 I noticed a large lump in my lower abdomen when laying on my back, scared, I went to the Dr and he examined me and his reaction was "my God, what are your periods like?".
. That was a good bedside manner. Not!
Shocked at his reaction I told him they were heavy and prolonged and he said I had large fibroids. I had them checked at hospital and was told I could have a hysterectomy, or wait it out as I should be getting near to menopause and they would likely shrink or disappear. I opted for waiting it out.
. Well done because hysterectomy is a big operation and will cause menopause anyway for many women.
So fast forward a few years and November 2013 I had my last period, and the syptoms started, slowly at first, a bit of weight gain around the middle, hair loss for which I was prescribed iron and it worked a treat, itchy skin, heart flutters / missed heartbeats (this was scary, but had it checked a few times and they couldn't find anything wrong) - although this was never linked to menopause by the Drs.
The problems kept coming, more weight gain, swollen ankles which never went down, joint pains, spots, dry vagina and zero libido, then the hot flushes and the sweats started and they have been the bain of my life.
. As oestrogen levels drop the body may become dry: inside and out. Medics simply don't join up the dots! >:(
I recall once going to see an older female Dr and I had read that it was best to take a list with you if you had multiple issues, so I did and I was told rather sharply, like a naughty schoolgirl, "put your list away and just tell me!".
. Nasty GP! :kick: :beat: not the best bedside manner there then!
Never had much sympathy from Doctors, although I think things are changing now. I asked her for HRT and she said she didn't want to go down that route, (I did, but obviously I didn't matter) so I persevered and tried to do it on my own.
too many GPs think that because menopause is 'natural' we should struggle. Her time will come ;-). She should of course referred U to a dedicated Clinic.
So last September I went to see a private Menopause specialist who prescribed me estradot patches and utrogestan. I felt like I had been given the magic treatment, but 1 year on, it is no different, the head sweating has been unbearable this year, so thinking about coming off the HRT as it doesn't seem to have any effect on my symptoms. It may simply [though nowt is simple until we find a regime that suits] that your HRT requires an adjustment. Which symptom did U want to ease first?
I have just been discussing with a (more understanding) Dr, and she thinks that clonidine may help to control body temperature, so just waiting to get that prescription.
I am beginning to think this will never end, as I have friends who have had a few months of discomfort / symptoms and then they are all clear, I am at nearly 12 years and each year feels worse.
Some women 'sail through' apparently. We don't get many on this Forum . browse round, make notes ;-)
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Thanks CLKD, your comments made me smile - and it sounds like you have heard all this SOOOOOOOO many times. If I could stop just one thing, it would be the head sweating as it stops me from doing so many things. I don't like to socialise when it is warm outside, I never go on holiday, or do my gardening in the summer, just moving from one room to another can start it off, so yes maybe this is the worst symptom.
I've never been bothered with mood swings or anxiety, which is a plus I suppose!
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Oh and just to add, the Dr didn't want to increase the dosage due to my age.
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Dragonladee, I'm sorry to hear you have been putting up with these dreadful symptoms for years with no help. I think it's got to the stage where the NHS can only give out bog standard HRT if you are lucky.
What dose of oestrogen were you using? I had a dreadful sweating problem and I can tell you that a fairly high dose of oestrogen is needed to combat that. A 25/50mcg oestrogen patch is unlikely to cut it and I found it to be completely ineffectual. The only thing that cut through for me eventually was three pumps of Oestrogel every day.
If you were using 25/50mcg Estradot and 100mg Utrogestan every day continuously, chances are, the Utrogestan cancelled out the positive effects of the patches too.
I think stopping HRT is the last thing you should be doing. Your oestrogen has probably completely bottomed out and that's why your symptoms are worse. I think clonidine is a bad idea because it's not going to treat the cause of your symptoms which is oestrogen deficiency.
A word of caution on your friends who apparently sailed through the menopause. They cannot possibly know if they sailed through the menopause because they only got through the first phase ie hot flushes and night sweats. Once post menopause, the effects of very low oestrogen levels accelerates the ageing process and loss of bone density can be very rapid. Then there are other issues like cognitive health, cardiovascular health, problems with insomnia plus much more. Oestrogen is like a control centre and without it, things start to go wrong unless you are very lucky. A lot of women have health issues in later years and don't even know they are caused by lack of oestrogen and the knock on effects.
I would increase the dose of oestrogen immediately and see if that helps the sweating. If the doctor refuses to help you I suggest you find a different doctor or try the Newson clinic.
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Hi Mary G, thank you for your comments they are very helpful and have certainly made me think!
I started on estradot but this became unavailable countrywide I understand, so have been given a couple of different patches since, currently on Evorel 25 1.6 mg patch twice a week and Utrogestan 100 mg capsules daily. I originally got the HRT treatment from a private clinic and from then on got the repeat prescription from my GP. Both the private practice and my GP have said they wouldn't want to increase the dosage due to my age - I didn't start taking it until I was 65 and have just been on it for a year.
It is just the feeling that it is never going to end, I have heard of women in their 80's still suffering symptoms and I feel like that may be me.
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Age should not come into it! Would they tell a diabetic or a man ............ :(
Age is a number. Unless U have a potentially dangerous medical history and that any potential risks have been explained, it should be up 2 U whether you continue. I agree that U contact the Newson Clinic for further advice.
Also do tell your GP that Quality of Life is important for us all and that many women end their Lives due to intolerable unsupported symptoms. Does he/she really want that on your records, sometimes we have to lay it on thick!
Let us know how you get on.
Tnx Mary G!
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Dragonladee, I would either find another doctor or just increase the dose myself and try to get hold of oestrogen privately. Perhaps try Oestrogel?
From my experience, a 25mcg patch which often doesn't stick properly Is completely useless and you would be lucky to get any relief from that at all. I would guess your oestrogen blood levels are very low.
I don't know what age has to do with anything. You were only just over the 10 year window for starting HRT post menopause and it should be up to you to weigh up any risks which are very small anyway. I'm 64 and I've been using HRT for nearly 20 years now and I'm on it for life. I use two pumps of Oestrogel every day with separate progesterone and testosterone every day and it's going very well with no menopause symptoms or side effects.
As you say, some women have menopause symptoms for life. The more I read on here about clueless doctors and lousy menopause treatment, the more I think the whole menopause thing needs to be blown wide open because the current approach is completely wrong and it's harming women. Doctors like Professor Studd and Louise Newson have done some brilliant work in recent years and raised awareness but more needs to be done. The menopause needs to be recognised as a design fault in the female make up and treated more like a thyroid condition. It's unbelievable the way women are left to fester for years on end with debilitating menopause symptoms that could easily be treated with the right type of HRT at the right dose. Some doctors bang on about the risks of using HRT but completely ignore the risks of not taking HRT.
I really don't think you should give up on HRT. Get some help and perhaps look into other types of HRT like Tibolone which is oral and well tolerated.
I hope that helps.
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However Mary G - the NHS will do a certain group of thyroid function blood tests and even when a patient returns many times with symptoms, these men/women have to go privately for 'extra' blood testing >:( [sorry can't remember which]. ?? medical negligence ??
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CLKD, my sister is hypothyroid and she doesn't even know if she is positive for the antibodies. She knows virtually nothing about the details of her thyroid condition and just has telephone appointments with a useless GP who either loses her results or accidentally changes her dose. She is currently taking 100mg of Levothyroxine.
She also had osteopenia and is not getting any meaningful help with that either unless you count a clueless consultant who told her that HRT doesn't help osteopenia.
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I would see someone else, as you are probably on a very low dose of estradiol, and a "specialist" who is dosing by age rather than clinical need, and also hasn't discussed testosterone with you, is not providing the best care, particularly as you are paying for it.
I would also give you a word of caution about clonidine - this is a very old fashioned blood pressure lowering medication that is no longer recommended for menopause symptoms due to safety concerns ie fainting and breaking a hip.
There is no universe in which clonidine is safer than estrogen.
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Yes, I had my thyroid checked and the other basic tests that the NHS do, but won't look at hormone tests - you do have to have those done privately at great expense.
Also I did ask about Tibolone as I had read good things about it, but my GP (female GP) didn't want to initially try this and has asked me to try clonidine first. It just seems to drag on, because as mentioned earlier telephone consultations take about 3 weeks and don't even get me started on how long it takes to get a face to face consult.
I may end up going down the private road again.
I'll keep you updated.
Thank you bombsh3ll for your post, I just read it as I was about to post the above. I am not seeing the specialist now, I did for the first prescription and she was the one that prescribed what I am on now, but then went through my GP to continue the script. I didn't realise that Clonidine was no longer prescribed for Meno symptoms, I did think it a bit strange when it was suggested, but you get to the stage of being willing to try anything.
I am certainly being given food for thought and a fire in my belly with the comments I am getting.
Thank you all x
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:thankyou: Mary G and bombsh3II
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I would just make clear to your GP that you neither need nor want to take a potent blood pressure lowering medication with the very real risks of harm for absolutely negligible benefits on vasomotor symptoms, that is no longer recommended for this indication.
Emphasize that tibolone will help not only your vasomotor symptoms but bone health and libido.
If you can't get tibolone from your GP, I would ask for a referral to the NHS menopause clinic or seek private care for this.
It is not appropriate for a GP to insist that someone first try a treatment that is potentially unsafe and only marginally effective for one single symptom of hypoestrogenism before accessing their preferred treatment.
Whilst we cannot always access the appropriate treatment through the NHS either immediately or at all, we always have the autonomy to decline treatment that is unsafe or inappropriate.
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There's normally a very long wait for an NHS meno clinic, a year isn't unusual. I agree with everyone else that 25 mcg isn't enough for you and you should increase. Unless you can see a more knowledgeable GP I'd advise you to go private if you can possibly afford it. Newson does video appointments so you don't have to let be near a clinic and they will prescribe the amount you need to feel better (others available too). I know it's expensive but there's anything worth spending on it's your health. Might be worth asking your surgery first if they have a meno specialist.
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Health should be our first priority especially when we can't access medics with knowledge.
Where's the BMS in all this?
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After having hot flushes and night sweat for 15 years, both of which improved re intensity over the years, when the nght sweats suddenly increased to 8/9 a night I decided I had to bite the bullet and see a specialist to get full info on what could possibly be done at age 68. I'd been waiting 5 years for Fezolinet (?) to be approved in the UK and wanted advice on that because I couldn't see any other alternatives due to my age.
Much to my surprise the specialist started me on Estradot 12.5, then 25 after 6 weeks. The day flushes improved quite quickly but night sweats were more tricky. I gradually increased and 2 years on am now on 75 (+ utrogestan 100). The day flushes are no more but I do properly overheat doing exercise (tennis) when it's warm which is rather embarrassing. I still wake up 5- 6 times a night, sometimes hot , sometimes not, sometimes sweaty but generally get back to sleep okay. The specialist doesn't really want to increase Estradot any more as I'm little (46kg). My oestrogen levels last year were 290.5. She suggested lots of other things to try (supplements, CBTi, foods, plus several other ideas) all of which I did in earnest, I even tried a sleep restriction programme for 6 weeks but nothing made any difference so I have now accepted that this is as good as it gets. My mum was still having them to her dying day in her 80s so I think it's in my genes!
As others have said a 25 patch is a low dose and going by my experience it would be well worthwhile increasing the dose but will probably mean you'll have to go private unfortunately though worth giving the GP a go first.
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290pmol/L is still pretty meagre and if I were paying for treatment I would want at least a 100mcg patch.
I don't think being small justifies subtherapeutic treatment, your low weight is a risk factor for osteoporosis and you don't have the thrombotic risk of someone who is overweight.
If you still have symptoms I would advocate for an increase in dose.
You say your specialist doesn't want to increase your dose, but it shouldn't be a unilateral decision, paternalistically handed down without regard for your ongoing symptoms or your voice being heard within the decision making process.
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Your levels (and your symptoms) should be the determining factor not your weight. It doesn't work the other way round, they wouldn't give you more because you weighed more than average.
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Thank you all for your replies and comments, I will certainly give my GP a try to see if I can increase the dosage through her and if not it looks like it will be back to the specialist.
Shirazette, you sound like you are having a horrible time of it, and probably not helped by knowing your mother went through it until her 80's. My mother grew up in an era where you didn't talk about these matters and I don't really know how she went through the menopause. I can remember her being hot and fanning herself during the summer months, but didn't realise what it was and I don't know if she "came out the other side" or continued with problems.
You just keep hanging on and hoping it will end, but thanks to suggestions on here it appears that an increase in estrogen will improve things and I have to give this a try.
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Hi Dragonladee, as others have said, you definitely need a higher dose. I had the same as you, my head used to drip with sweat & even in winter the hair on my neck was wet. I'd actually forgotten I used to get that until I read your post. I use 4 pumps of oestrogel a day & in the past I have been on 6. Other ladies on here use much more. There's absolutely no point in using any HRT unless you use a high enough dose to control your symptoms. I've recently been seeing a surprisingly helpful GP who told me she would not want to stop prescribing me HRT regardless of age (I'm 57). She said the practice policy is: if a patient gets relief from it, it can be prescribed indefinitely. She said she is happy to persevere until my symptoms are under control. But as you will learn the longer you're here, we often have to fight to get what we need. If you print out as much information as is relevant to your issues that contains all the guidance the NHS should be working to if necessary, you can challenge any refusals you come up against. GPs don't like it but you don't need to suffer & are entitled to appropriate treatment.
Also, there are neck fans you can buy on Amazon. They are rechargeable & look a bit like a set of headphones. They are really good & target the area you need cool air the most. They'll actually dry your hair. They're only about £20. There is one that is about £200 that actually blows chilled air like a mini air conditioner round your neck, if funds allow.
Do let us know how you get on.
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I am beginning to think this will never end, as I have friends who have had a few months of discomfort / symptoms and then they are all clear, I am at nearly 12 years and each year feels worse. Sorry for the long story, but is anyone the same or similar?
I'm 63, in my 20th year since onset of perimenopause at 44, still distressingly symptomatic, most problematically with persistent vasomotor symptoms & debilitating insomnia. Despite working my way through the catalogue of HRT options over the past 11 years, I still get a variable no of long-lasting episodes (up to an hour) of intense overheating every night & the dreadful associated fight or flight cascade that can make it v difficult & too often impossible, to get back to sleep.
I do also get flushes by day but these are less problematic than those overnight. I can't sweat under any conditions & while this means I don't have to cope with the horrible effects of that as sadly you & others who've posted here do, it does make it very difficult to cool down, hence the overheating episodes & frightful adrenalin effects remain intense & last a long time.
I remember my Mum, never on HRT, still flushing into her late 60s & possibly until she died at 74. So like you, I very much fear I'll be one of the few who continue with vasomotor symptoms for life. I do have other systemic conditions complicating matters, meaning HRT's efficacy is probably compromised, so please don't take my circs as likely to mean you'll also continue to suffer given appropriate advice & help. I'm just posting in solidarity as it can be be isolating & v demoralising to feel an outlier with something that badly & persistently compromises QOL. Worse still, there can be a sense of personal failure when inevitably we compare ourselves with those of our peers who seem to have struck luckier in the menopause lottery.
Though I understand your clinician's sensible approach in starting you on a low dose given your age, I agree with the others that a 25mcg patch seems unlikely to control the degree of sweating you experience, so it seems well worth pursuing a dose increase & if this either isn't forthcoming or effective enough, another appt with a menopause specialist.
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Also just putting up with symptoms isn't a good idea from a health point of view either - untreated hot flushes aren't benign and there is good evidence that they are a predictor of worse health outcomes in later life.
Even if your provider doesn't consider your quality of life important enough to warrant treatment, the health risks of going untreated or suboptimally treated should also form part of the discussion.
If you have any risk factors for osteoporosis I would also emphasize these and the fact that estrogen is licenced for osteoporosis prevention in the UK. This can help in situations where inappropriate treatment options for menopause are being pushed, as you can point out that none of these have a licence for osteoporosis prevention.
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Hi Mrs Mitch, sorry to hear you are also having a prolonged menopause, it just drives me nuts that women aren't all given what they need to normalise things and ease these awful and distressing symptoms, even female Drs dont seem to want to help or can't help, I'm sure it is all down to financial reasons.
I did actually buy a neck fan a couple of months back and it is brilliant, the only problem is you can't watch TV at the same time as it wafts past your ears and you can't hear whats going on.
Hi Wrensong, I haven't had the feelings of flight or fight that you detail on waking in the night, but do wake up a lot in the night with overheating and sometimes can't go back to sleep too easily. I have had many other symptoms over the years, some have gone, some remain and some are new. Like you say it is quality of life that is compromised as I find that I don't like to go out and socialise due to the sweating and the weight gain (which is not drastic but I am concious of it, having always been fairly slim 10/12 and now a size 16 creeping up to 18). I know people say don't bother about it (weight or sweating), but it is easier said than done. I was in a restaurant a few weeks ago madly fanning myself with the menu and people look as they go past and women give you that knowing sympathetic look, which makes you feel uncomfortable.
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Interesting bombsh3II - mayB another thread about how they may be a predictor and of which health outcomes ?
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I hope there are some very embarrassed doctors reading this thread because it is actually negligent to leave women suffering in this way.
I'm wondering what sort of person sits in front (or perhaps I should say sits at the other end of a phone) of a deeply distressed woman with debilitating symptoms and comes out with the nonsensical crap we hear on here all the time. A lot of women have had to stop working because their symptoms are so unbearable. It's incredible and I wish these were Guardian comments so I could have a good swear about them. It's difficult to know if they are useless or just don't care.
I've been on this forum for about 10 years now and I'm greatly encouraged by the newer, younger generation of menopausal women on here who are more assertive and don't just meekly suck it up and accept any substandard treatment that's dished out because they think the doctor is automatically right. It's very refreshing.
My advice is get help privately if you can afford it.
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Yes, Bombsh3ll, great observations and I'm about to look into future outcomes of putting up with menopausal symptoms. These are things that you don't really think about and just since my start of this thread yesterday, I have been given so much food for thought.
I really can't believe that women aren't just given HRT as a matter of course. Its astonishing and more to the point, I can't believe that I have put up with it as long as I have without informing myself more.
I am so glad I joined this forum and thankful to all you ladies who contribute and inform.
Great comments Mary G and I completely agree that Drs should be reading this (it was actually my GP that put me onto this site, as I never knew it existed). It does make you wonder how different things would be if men were menopausal???
You must have seen many changes in attitudes and treatment over the 10 years you have been on here.
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Dragonladee
I haven't had the feelings of flight or fight that you detail on waking in the night
I'm glad you don't as this is the worst aspect of it for me. But I can also well imagine the distress you feel if you're sweating copiously in a public setting. I find I do flush badly (I'm fair skinned & go very obviously red) in stressful situations & that makes it difficult to focus on what's being said, how I need to respond etc. In fact very recently an important (to me) & v stressful encounter took a horribly unexpected turn when I was thrown by soaring adrenalin, flushing badly & unable to decode what the other person meant & ended up completely flunking the exchange.
Bombsh3ell yesuntreated hot flushes aren't benign and there is good evidence that they are a predictor of worse health outcomes in later life
the awareness of this adds to the stress & sense of helplessness of the situation.
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290pmol/L is still pretty meagre and if I were paying for treatment I would want at least a 100mcg patch.
I don't think being small justifies subtherapeutic treatment, your low weight is a risk factor for osteoporosis and you don't have the thrombotic risk of someone who is overweight.
If you still have symptoms I would advocate for an increase in dose.
You say your specialist doesn't want to increase your dose, but it shouldn't be a unilateral decision, paternalistically handed down without regard for your ongoing symptoms or your voice being heard within the decision making process.
Hope I'm doing this right, I haven't used the quote function before.
Thanks for your reply Bombsh3ll but I'm going to stick to the 75 until I see the specialist again, probably in January. I'm sure she would agree to increase the dose if I was keen to try but it would also mean doubling the progesterone which I'm very reluctant to do. I might have another test to see where my levels are in January, I think I might have been on 50 when I had that test. I do manage alright now despite the disturbed sleep. I must be getting enough sleep as I'm not tired during the day, it's more a concern over any long term damage it might be causing (alzheimers and the like)
Re the specialist, nothing paternalistic going on and I feel very listened to, I'm very happy with her care. I do have osteoporosis and have been seeing an excellent (NHS) consultant for many years and I am now osteopenic through treatment (yes it can have scary side effects but can't imagine what state I'd have been in now without it). Of course I'm hoping the HRT will help with that too.
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Oh Wrensong, I absolutely know what you mean where you can almost zone out and are so focussed on your flushing / sweating (both in my case), that you can't process what is being said or is going on around you. I am retired now so don't have to be in too many awkward situations if I don't want to, but towards the end of my working life, I was on the front desk of an estate agents and I can remember the feeling of dread every time someone walked through the door and I wasn't sure if my face was going to glow like a lightbulb! You can feel it coming on and that is all you focus on - it's dreadful.
When I was younger I was never a blusher, I always had pale skin and didn't blush whatever the situation was, but I feel I am certainly making up for that now, but this heat comes from inside and rushes up to your face and takes over your body.
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Also just putting up with symptoms isn't a good idea from a health point of view either - untreated hot flushes aren't benign and there is good evidence that they are a predictor of worse health outcomes in later life.
First I've heard of this one, any links to research papers would be helpful.
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I did a quick search and found some stuff about the long term health issues associated with hot flushes and night sweats but it was American.
I would imagine a lot of the thinking behind that theory probably focusses on the problem of sleep deprivation, long term insomnia and the damage that can do. Having seen what it did to my mother's health over more than 40 years, I can well believe it.
It's interesting though and worth further investigation.