Menopause Matters Forum
Menopause Discussion => Alternative Therapies => Topic started by: stellajane on February 07, 2020, 04:22:46 PM
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I'd really like to hear your positive experiences, though I realise most people who have them will already have moved on.
Was there anything you did/took to ease the transition?
Did it in the end turn out to be a lot simpler than you'd anticipated, or was it horrendous?
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Hi stellajane. I did not take hrt for very long, but I have only had a positive experience since coming off it.
I'm not sure how much it matters whether you've taken it for a long time or not re the transition.
I came off mine overnight and then everything just got better and better.
I take a multi for women over 40 (viridian) and omega 3 vegan capsules. Also magnesium in the evening. Again Viridian.
Are you off it yet? Are you stopping gradually or over night?
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Hi stellajane - you might want to also post in the main section as I imagine there will be some very helpful posts about how to come off and how people felt with different ways of doing it. I am also interested in this as I am sure I will try to come off once more at some point as I get more and more fed up each cycle with the progesterone and the bleed - not fun in your 60's as you know. We've both been doing this a long time!
The only time I tried to come off it was a sudden stop - basically ripped off a (Evorel) conti patch (my first after trying to change to conti HRT after cyclical HRT) in disgust because I got a migraine the day after I started it, and it was the progesterone withdrawal migraines from the cyclical HRT that led my doc to suggest the conti. So I went from 50 mcg to zero. Nothing for a few weeks but the symptoms just crept back - the flushes began to appear, and then the night sweats and then I got symptoms that I hadn't had before starting HRT - like lower back ache and pelvic pain. Also the menopausal acne/rosacea/hot itchy patches or whatever it was started coming back on my cheeks. Really not pleasant - all of these symptoms disappeared when I went back onto it.
Also when I tried to reduce (from 50 to 37.5) after doc suggested my dose was too high after I turned 60 - again after a few weeks even this small decrease led to my getting warm and restless at night so I went back up to 50 and all was OK again. I've never given it long enough to see if the symptoms subside or not - mainly because I was working in a demanding role where I needed to be on the ball and give out lots of energy, so mopping my brow and flaking out just didn't come into it. I'm retired now but still that state of being does not appeal - even going through it for say 9 months!
I really dread the thought of stopping and don't know when I'm going to take the plunge but I may wait until I'm 70 if I live that long. Whatever happens I plan to do it very gradually starting with reducing the testosterone (but also can't face the thought of all those aches and pains again) and then the oestrogen - and I will be glad to see the back of the progesterone.
You are brave for taking this step so all the best with it. Be sure to let us know - and in the main menopause board where more members will see your posts! I will be very interested to read how you get on!
Hurdity x
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I was taking the gel too, though only 2 months.
Have you already stopped taking it? It's about the lowest dose I suppose so the level will take a shorter time to balance I imagine?!
My hot flushes did return after about 2 months but I was expecting that. They are no-where like they were before though.
I also have reduced my weight so I am not sure if that has anything to do with it.
My bmi was at the higher end of recommended bracket and is now less. Still getting that down a bit more. X
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Hi stellajane,
I cannot contribute much to your thread, I had been on Estradot patches and Utrogestan for just 4 months, enough to get suicidal though. I stopped it immediately and foggy head and awful thoughts went away in a couple of days, very fast response to hormones I suppose! I hope you are way past the hormonal withdrawal syndrome window (caused by downregulation of the oestrogen receptors genes) and will be just fine.
BeaR.
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I can't help as I have never been on HRT, but good luck on your journey.
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Hi
I had an horrifc forray into peri and ended up on all sorts of poisons that nearly killed me. I weaned off the hrt i had been taking for over 4 years just over 5 months ago. I weaned for 3 months by cutting my pills down. All drugs that affect.the brain should be slowly reduced imo. Well i was petrified but i am fine. I have had one severe hot flush and get some hot feet on occasion and some other symptoms that come and go. I stopped the hrt as had terrible anxiety and depression and also was getting frequent migraine with aura. I have not had one migraine since being off and the anxiety has reduced by 75 percent along with the depression. I am all for hrt but i do think there are a lot of ladies that are made worse by hrt. I have talked to a few in person. I think for me initially it worked wonders but then it actually made me worse. You are on a super low dose so hopefully the transition will be easier. Xxx
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Hi Stellajane. I remember you replying to my post on the same subject earlier in January. I wish I could pass on my positive experience of trying to give up but unfortunately, I only managed 16 days before I started to feel unwell again. I'm really struggling with the whole HRT thing because I find the side effects from taking it are as bad as the symptoms when I don't take it. Sometimes I get really scared because I can't face years ahead of feeling like this. I was on Prempak C for many years with no problems so I just don't understand why I haven't been able to find something else that suits me over the last 2+ years 😞. I wish I could just get my hands a month's worth of Prempak so that I could see if they still worked for me or whether I would have been like this anyway !
However, this is only my experience and you may find that when you come off of it, you will be perfectly fine.....I really hope so. I will be interested to hear how things go for you so please keep us posted.
Good luck 🤞
Rosie63 xx
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Stellajane, sorry you had a bad night. My hot flushes did return after a few weeks, but they have become less and less over the last year. I imagine the hrt drugs you were taking will need some time to get out of your system properly and then your body will need to readjust and your own hormones will need some time to hopefully balance. I see your sisters have had a rough time with this, but 'that's not to say that your hormones wont balance ok. ?! I do think you need to give it at least a few months though to get a real idea.
Alua i had a very similar experience. My body reacted very badly to the adding of the hormone mix. I would really like to know exactly what is in these drugs. On my packet it says each pump contains 0.75mg of Estradiol. After my bad experience I asked the next gynae I saw, how exactly is this made and she said it is plant based and mostly yams. I can not imagine I would have that reaction to yams. I would really like to know exactly how they make it and if it is just yams or if there is something else added. It is very interesting and I, like you have not looked back since stopping hrt.
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Crikey Stellajane, your sister deserves a medal for suffering all those years but I guess she hasn't had much choice. I have to admit I have thought about trying AD's. The doctor did prescribe Sertraline which I have here so that is still an option. I just don't see how they will work though if it's lack of oestrogen 'that's causing my symptoms.
Sorry to hear you had a rough night. It sounds as though you could be similar to me in that it doesn't take very long at all for symptoms show themselves after stopping😏
Anyway, good luck and keep us posted.
Rosie xx
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Hi Stellajane 'that's great you are determined to give it up at least 6 months. That should allow things to settle a bit.
I know what you mean, maybe I am allergic to yams! ;)
Keep posted how you get on and I really hope things will be ok for you this time! X
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Alua i had a very similar experience. My body reacted very badly to the adding of the hormone mix. I would really like to know exactly what is in these drugs. On my packet it says each pump contains 0.75mg of Estradiol. After my bad experience I asked the next gynae I saw, how exactly is this made and she said it is plant based and mostly yams. I can not imagine I would have that reaction to yams. I would really like to know exactly how they make it and if it is just yams or if there is something else added. It is very interesting and I, like you have not looked back since stopping hrt.
Hi Stellajane 'that's great you are determined to give it up at least 6 months. That should allow things to settle a bit.
I know what you mean, maybe I am allergic to yams! ;)
Keep posted how you get on and I really hope things will be ok for you this time! X
Jari - I realise this is a bit off topic for stellajane's thread asking for experiences of stopping HRT those who have been on HRT for some time but just as an aside wanted to pick up on your point re what HRT contains and about yams.
All the added ingredients are listed on the leaflet as well as the dose of estradiol. The gel does not contain yams nor any residue of it. The estradiol used to make the gel is a pure crystallised chemical manufactured from whatever is used to start the process off eg yams and soy and it bears no resemblance to the original raw material.
Stellajane - hope your weekend was OK body temperature-wise...
Hurdity x
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Thanks Hurdity.
It is interesting isn't it. My leaflet just says Estradiol which as you say initially comes from yams.
Given my breathing difficulty whilst taking it, I am really curious as to how they make the finished gel product to cause that reaction.
I am possibly allergic to whatever it is and from my leaflet, it says to stop immediately with breathing problems, chest pain and arm and neck pain etc. This is because it may be causing a blood clot so it is of course very important for people to know, should they get these symptoms, they must come off it immediately.
J x
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Jari, it may not even be the fillers but the oestrogen itself.
Oestrogen is a stimulant and in its exogenous form it may simply overstimulate your nervous system which could cause both panic symptoms, which can feel as if you cant breathe, and/or be perceived as a poison by your brain.
The fact it's bio-identical can make it extra potent compared to, say, ethyl oestrogen in the pill. The purest drugs can have the strongest reactions!
I was fine if took the pill but when I tried Estradiol and Qlaira I felt poisoned and overwhelmed, even with tiny amounts.
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I just wanted to say, I'm loving this thread. I feel like I've landed here at exactly the moment I need. I'm on two pumps and I'm going to see whether I can drop to one , maybe one x1 day, 2 x another at first and then just one , then half etc etc. My flushes haven't really been bad , just a night time thing but the emotional aspect when not in it was horrific. Paranoia, anger,rage, depression and so on. I?ll be able to tell pretty quickly if they come back.
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Jari, it may not even be the fillers but the oestrogen itself.
Oestrogen is a stimulant and in its exogenous form it may simply overstimulate your nervous system which could cause both panic symptoms, which can feel as if you cant breathe, and/or be perceived as a poison by your brain.
The fact it's bio-identical can make it extra potent compared to, say, ethyl oestrogen in the pill. The purest drugs can have the strongest reactions!
I was fine if took the pill but when I tried Estradiol and Qlaira I felt poisoned and overwhelmed, even with tiny amounts.
Actually dangermouse - the ethinylestradiol in the pill is much stronger than bio-identical estradiol in terms of its afficinty for oestrogen receptors - can't remember which receptors ie where in body but yes - opposite to what you said as I understand. This is why there are greater restrictions on taking it re blood pressure, smoking and age re clot risk etc. Also its effect on the liver too.
Hurdity x
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Jari - transdermal HRT (ie gel or patches) is associated with much lower risk compared with oral HRT - in terms of cardio-vascular problems clots risk etc. The warnings are always extreme but these effects are in fact very rare for any HRT otherwise it wouldn't be prescribed as it wouldn't pass the safety checks. Oestrogel is in fact also one of the HRT types with very few fillers - and like I said are all listed in the leaflet.
Stellajane - your experience is worrying (re comfort!) - as I think my experience has been similar although like I said I've only once tried to come off completely but have reduced the dose several times....I will be following your progress with great interest (and sympathy where necessary!).
Hurdity x
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Hi stellajane
I tapered off HRT gradually after being on it over 17 years. I set myself up a spread sheet so I knew where I was up to with regard to dosage and tapered very slowly over a 3 month period. Unfortunately this was over 3 years ago and I am still plagued by hot sweats, insomnia all the usual. I think though going cold turkey would be a lot harder. I know all my symptoms have returned but it was a gradual return.
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I have had my hrt stopped 3 weeks ago after been on it for 5 years, by the doctor due to high blood pressure. Flushes are back and night sweats. Getting upset again. Hope and pray she gives me it back next week ☹️
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Well i am coming up 6 months off now. I tapered over 3 months also. ct was much harder whwn i tried that I have mild symptoms off but nothing like when peri hit 6 years ago that was in and out of hospital material that was! My mum amd most of her friends took hrt multiple years not one of them is still on it and they are doing fine. They all just ct off. Yes they get the odd hot flush but they live their lives. I hope you will be okay too. Xxx
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Hello ladies.
I stopped my HRT eight months ago and before that I was using Oestrogel 2 pumps daily and Utrogestan vaginally. I have mentioned before that my physical symptoms were never that bad but my mood swings really worried me and HRT didn't help with those.
The only definite change was that two weeks after finishing all HRT I developed VA with burning and itching. I tried several otc remedies but now use YesVM externally morning and night. This has worked very well so far and I haven't needed topical oestrogen. My VA symptoms appear to have resolved without using any form of oestrogen and despite coming off HRT. Although grateful I can't figure out why! Perhaps that part of my body has adapted to it's new low oestrogen state and decided that it doesn't need to complain anymore. With any luck other parts of my body and brain will get the same message soon. I live in hope.
Wishing you well ladies.
K.
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It does seem as if there is a sudden onset of symptoms like VA and libido issues which then calm down after a few months. it's probably caused by a sudden drop in hormones and then, as you say, the body adapts to the lower level and these symptoms go away.
I've worked with a few women who used one tube of the topical oestrogen and then didn't need it again.
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The general consensus seems to be actually that physical symptoms of vaginal atrophy or GSM caused by low oestrogen do not in fact normally adjust but continue to develop or worsen with age or rather years post-menopause. Kathleen it sounds like you are one of the very lucky few if VA continues to stay at bay - although it is over the next few months or even years that you may notice a change.
Libido may fall dramatically at menopause because it does sometimes dramatically increase during peri-menopause due to hormonal surges, but it unlikely to recover as both oestrogen stablises at its low post-menopausal level (in the absence of HRT) and testosterone continues to fall with age along with all androgens. There are other factors too of course.
This is my understanding from what I've read.
Kathleen it also sounds like you were a special case in that the reason your symptoms did not reaolve using HRT was because you had undagnosed Hashimotos and therefore your post-menopausal symptoms were due to thryoid malfunction/deficiency/. I hope you don't mind my mentioning that on this thread - and I am glad you are faring well :)
Hurdity x
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Also worth pointing out that generally most women do not suffer terribly from VA.
I have had zero problems so far 2 years post meno and I don't know any women that suffer from it, other than some on this site. Just worth pointing out for any reading. X
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From the research I have done it seems 40 to 50% of women are likely to get symptoms of VA, but not all of them severe enough to see a GP.
At seven years post memo I have never had it and neither did my sister or mother.
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Also worth pointing out that generally most women do not suffer terribly from VA.
I have had zero problems so far 2 years post meno and I don't know any women that suffer from it, other than some on this site. Just worth pointing out for any reading. X
That is a sweeping generalisation Jari!! As you say based on your experience and perhaps some women you know.
However like I said some physical symptoms including vaginal atrophy may not develop until some years after menopause and as stellajane says - do not realise either that it is VA (GSM) and that it is another late post-menopause symptom.
The Stages of Reproductive Ageing Workshop (STRAW) summary notes that the late post-menopause may not start until 3-6 years after the last period and if other symptoms like flushes and sweats have abated, it may not be apparent that this is a consequence of oestrogen deficiency - which becomes more prevalent the longer we live as women. The tables in that paper notes increasing symptoms of urogenitcal atrophy during this time. There will also be a genetic component I'm sure like stellajane says, and there are of course changes due to natural ageing so disentangling the latter is difficult. However would be easy to do a survey to include women who become menopausal at young ages so as to correct for age as a factor - this might have even been done already?
"LATE POSTMENOPAUSE (Stage +2)
Stage +2 represents the period in which further changes in reproductive endocrine function are more limited and processes of somatic aging become of paramount concern. Symptoms of vaginal dryness and urogenital atrophy become increasingly prevalent at this time. However, mean FSH levels fall again many years after menopause in the very elderly70; future studies are needed to determine if an additional stage near the end of life is warranted".
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3580996/
Hurdity x
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Hello again ladies
When my VA symptoms began I first looked at over the counter remedies but of course I will move on to other treatments if necessary. So far all is well with vaginal moisturiser but I realise that things may change in the future however I don't want to take more medication than I need at the moment.
Hurdity - Of course I don't mind you mentioning my Hashimoto's diagnosis, it makes a change from me talking about it lol. You make a good point about how some of my meno symptoms could be thyroid related and I'm hoping that now I'm receiving treatment I will notice some improvements.
Wishing you all well ladies.
K.
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Hurdity.. yes, based on my experience, so far! Plus from reading, it seems around 50% of women will suffer from VA at some point, which could be mild or much worse. I'm hoping by carrying on with my hormone balancing lifestyle and diet, I will continue to have limited problems. Fingers crossed.. but so far it seems to be working well. X
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I must admit I had bladder problems during peri. One or two infections and and stress incontinence. Post meno all is well.
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Hello again ladies
If fifty percent of women do not experience VA it would be lovely to know why. This is always the frustration isn't it ladies as there must be reasons for such a wide range of experiences. It is a pity that there is no dedicated research that could help us all better manage our symptoms.
Take care everyone.
K.
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It could also be that in perimenopause that you get very high oestrogen moments that plummet to very low oestrogen levels which can cause severe symptoms at both ends. The levels may then recover to normal low levels, hence why the symptoms can go away. This is one of the reasons taking HRT in peri can make dosing confusing.
For those who get VA compared to those who don't, it could be that they naturally have drier tissues and so are more prone to this, in the same way that some people get osteoarthritis and some don't. The fact that systemic HRT doesn't cure VA must also mean it's not a pure oestrogen issue.
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I have always been 'over moist', in that area, necessitating the use of panty liners. In fact I still do. What you say makes a lot of sense.
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The fact that systemic HRT doesn't cure VA must also mean it's not a pure oestrogen issue.
...however local oestrogen almost always cures it in time at the right dose and with the right product(s) and sometimes in addition to systemic oestrogen - so it is an oestrogen issue....
Hurdity x
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Im sure the oestrogen really helps as it is a tissue stimulant but surely if it was from our own oestrogen no longer supplying the tissues the systemic oestrogen would be enough?
Thats all I mean, as there are probably other factors at play. I suppose in a similar way to sugar helping a diabetic dip even though its not actually caused by a lack of sugar.
The cause may of course be ageing and there isn't much we can do about that. So yes treating the symptoms is sometimes the only way.
I did try the local oestrogen after a bladder infection wouldn't go but it gave me a dry mouth so just occasionally using the Yes moisturiser instead although it seems to have settled now.
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Systemic oestrogen does not necessarily benefit VA (or genitourinary syndrome of menopause (GSM), as we ought to call it). Many women need to use local oestrogen, as it generally requires targeted treatment. Some sufferers cannot, or do not want to, use systemic, but still gain benefit from local treatment.
JP x
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Hi Stellajane, well I hope you don't have to wait much longer for your appointment, shame it's been cancelled a couple of times as well.
For me, while the hot sweats are uncomfortable, it's the lack of sleep which is my main problem, and yes I really hope I am not like this for the rest of my life because is unbearable sometimes.
I'm going to google menopause clinic near me I think and see about going. X
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Hi Sued, I was having intense hot flushes/night sweats around the time my periods stopped.
I decided to change my diet a bit and adopt a hormone balancing diet. Since then my symptoms have very much reduced. I do still get a couple of hot flushes a day but they are not bad at all.
Before this diet change the hot flushes were intense. They are now mild and far fewer.
I can not prove that it was the diet change that has done this and it may be that my menopause symptoms were going to pass naturally, but I am definitely sticking to the diet.
X
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Hello ladies.
Stellajane - so sorry to hear that your night sweats and flushes are back at full force. Will you return to the gel or try to ride it out a little longer?
I have been off HRT for eight months and I'm having various issues including irritability and tearfulness. My GP assures me that symptoms resolve at some point but when?
Take care ladies.
K.
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So sorry to hear this stellajane and you have my every sympathy....your experience is just what I dread as I fear that I will be the same going by limited past experience.....the skin too (on face for me).
What is the answer - apart from hysterectomy? Have just posted about this on Cassie's thread.
Yes QOL FTW!!!
Hurdity x
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Hi Stellajane, sorry the nasty flushes are back.
I had very intense flushes also and sweats, so I do sympathise.
I still get one or two flushes a day, but they are so much milder now, since stopping hrt over a year ago..
I think you took hrt for many years? it's just a thought, but as you have kept your estrogen levels higher because of the years of hrt, I am just guessing/wondering if it will take a little while for those hrt estrogen levels to reduce and get to your natural current level.
Once this happens, I hope for you that these symptoms will fade away.. I would definitely give it a few months before you can tell how your natural hormone level is? I really hope it will improve for you soon. X
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As an er doctor explained to me once, menopause is like a drug withdrawal only the drug that we have been on most of our lives is estrogen. Like all drug withdrawals, some suffer more than others, some can get off and stay off and others cant. Estrogen in whatever form is like a drug to our brains and bodies. Reagrdless of how it is made it is synthesized in a lab and withdrawing from it will cause withdrawal symptoms. I am now six months off hrt. I didnt think i would survive mentally or physically without it, i am still here. yes it is very tough some days and my symptoms were horrific. Yes i get hot flushes and other symptoms but its not as intense as when peri hit and i was in and out of the hosoital er like a yo yo. I am hoping yours will also be tolerable in time. X
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Hello again ladies.
A friend told me that for every year you are on a drug, it takes a month to come off it. That sounds like a bit of an old wives tale but she assured me a it was told to her by a doctor. Incidentally I believe that chemotherapy drugs take a year to clear the system.
Stellajane - I thought of you last night when I went to bed and I'm so sorry that you are suffering. I'm fortunate not to have disturbed nights ( hope I haven't just jinxed it) but I do feel horrible during the day with the jitters, irritability and the ever present tearfulness. I think setting a target is a good idea. I have an event to attend later this year and I really want to be doing better by then.
Wishing you well ladies.
K.
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I am so sorry to hear this stellajane - I was really hoping it would be different for you this time! Also for the very selfish reason that it would give me impetus to try - but provided my health lasts out I think I will keep going for a wee while longer, much as I hate the bloody bleeds - and prog itself and withdrawal....!!!! Good luck with the doc and do report back!
Hurdity x
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I think I?ll be lifer too.
I tried weaning myself off the other month.
Only lasted about 9/10 days, the horrible depression and rage, and crying got to me.
Thought I was having a breakdown! ( again!)
Couldn't and wouldn't go any further with it, so went back to my normal dose.
Within days, I was back to myself.
I just wanted to see what would happen if I reduced it, if I could manage on a lower dose, but the effects of it was just too much, especially at this time in my life, with MIL to look after. 🤷♀️
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Hello again ladies.
Stellajane - I'm so sorry that your symptoms have become unbearable and I completely understand your decision to resume HRT. Every day, well actually several times a day, I wonder if I can continue without HRT.
Jillydoll - I am not surprised that you went back to your full dose, especially with the extra stresses you have. I am eight months without HRT and tearfulness has recently become more intense along with low mood, irritability and anxiety. I'm not sure how much of this I can tolerate so I hope I see some improvement soon!
Recently my middle aged, male GP reassured me that all symptoms resolve at some stage. Of course he had no idea when and neither does anyone else in my opinion.
Wishing you all well ladies and sending hugs.
K.
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Stellajane.
You're welcome! This 'journey' can be so tough for some of us. Thankfully this forum reassures us that we are not alone.
Take care.
K.
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Hi Stellajane - sorry to read you're having such a difficult time.
I've been off now for c.17 months - it has been extremely tough going - every day I think about going back on (although I was never that great when on it) - however I only have to look at a packet of Utrogestan (((shudder))) to convince myself not to! Talk about caught between a rock and a hard place ...
My concern is/was at some stage when older coming up against a GP(s) who would refuse the HRT prescription - this has recently happened to a friend of a friend in her 80s.
Think I may have posted this link before:
https://healinghistamine.com/the-menopause-histamine-connection/#
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Nightowl i was wondering how you were doing. Glad to see you have managed to stay off.
I am now 6 months off and i think i might just make it. Have some rough days but overall sliggtly better off it all. And only one migraine in that 6 months instead of one every two weeks on the hrt.
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Hello again ladies.
Night_Owl and Alua - It's good to hear the experiences of other ladies who are coming off HRT. I stopped all HRT in July last year and sometimes I feel I'm doing okay and sometimes I don't! I wish there was some way of predicting how long it will take for things to settle down and indeed a guarantee that they will settle down! In the meantime onward and upward.
Wishing you well ladies.
K.
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Hi ladies
I plan to stay off - in it for the long haul - realise it could take *decades* but so be it. I accept it and have had to adjust my lifestyle accordingly.
The biggest deciding factor: I now know HRT made my migraines worse. The reality is that for some women, HRT - in whatever form - simply does not work for their particular biochemistry.
K, I'm the same, sometimes I'll have a run of feeling good then it all goes wrong again (eg. I can be peeling potatoes and suddenly feel like it's the end of the world, crying, dramatic mood swings - this did also happen whilst on HRT though) then I'll bounce back, it feels like 'emotional instability'. However I know within myself I'm better off it.
I do believe that there is still some sort of background 'cycle' going on for the rest of our lives. A friend in her 80s is convinced of it.
Alua, good to hear your migs are improved, just goes to show.
SJ, I'm wondering if you pushed through with the 'withdrawal', the urticaria may recede ...
I've also seen an Acupuncturist and a Homeopath to get me through - both treatments were 'somewhat' helpful.
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Night owl, I am so much better off it too. Only took it for 3 months with hideous side effects. Stopped and now concentrate on an improved diet /exercise and supplements and feel really good. X
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Hello again ladies.
Night_Owl - Emotional instability perfectly describes my situation. I will continue to struggle on for the time being. My pre HRT daily headaches lasted for six months then stopped completely and I'm hopeful that my current symptoms will soon burn themselves out.
Wishing everyone well.
K.
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Nightowl, Jari and Kathleen...very proud of you ladies managing without hrt. I still feel like i am dying some days but to be honest I felt worse on the hrt. I was just so petrified to come off it as had tried a couple of times in the past and was ready to jump off a building.
I weaned over 3 months this time and it was somewhat easier. I definitely had quite intense withdrawal even though I weaned off. I guess like all drugs the brain gets accustomed to it and goes into withdrawal mode when its removed.
After several near death experiences with western medicines I am done with hrt too. It 100 percent gave me chronic migraine and affected my vision adversley. It also made my anxiety and depression worse. I actually feel being off it I may return to normal one day.
I am practising radical acceptance of this crazy, challenging passage. On those days i feel like bawling my eyes out I just remind myself this will pass one day and its just crazy chemicals in my brain doing this and its not me. This has been going on 6 years now and I am still peri so I have quite a lot of practice at calling out the bullshit lies my compromised brain is telling me.
Hrt helped me initially and quite possibly saved my life but then it turned on me in a big way. My body had been telling me for a couple of years I needed to get off and I am so glad I finally listened.
To all woman out there suffering due to menopause I am sending you a big hug and hoping you get relief someday soon, from hrt or whatever method you choose.
Xxx
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Nightowl, Jari and Kathleen...very proud of you ladies managing without hrt. I still feel like i am dying some days but to be honest I felt worse on the hrt. I was just so petrified to come off it as had tried a couple of times in the past and was ready to jump off a building.
I weaned over 3 months this time and it was somewhat easier. I definitely had quite intense withdrawal even though I weaned off. I guess like all drugs the brain gets accustomed to it and goes into withdrawal mode when its removed.
Alua, I am really pleased you are off it too, although you mention withdrawal and weaning off. I have heard other ladies speaking about this and can not help but wonder if hrt is addictive. ?!
I was not on it long enough to wean off and came off cold turkey, overnight. I had no trouble at all coming off it and was so relieved to see the back of it after all the different side effects, one being terrible anxiety, it gave me.
Interesting you are still in peri, I am 2 years post meno. How old are you and what are your cycles like?
I found by making some changes to my diet has really helped and I can really say that I feel much healthier because of this.
Take care and I hope all continues to improve. X
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There's no right or wrong in all this.
Absolutely stellajane. Very much an individual thing and we must do what we feel is right for our own bodies.
Glad you have found the right solution for you. X
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Hello again ladies.
I've heard the menopause described as oestrogen withdrawal which is certainly what it feels like!
Incidentally when males go through puberty and experience surges of hormones it is known as 'testosterone poisoning'. Sounds about right lol.
Take care ladies.
K.
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Ok stellajane... i did not say there was a problem if addicted. I was just curious. Like many things I guess. I was drinking a lot of coffee and also was curious about caffeine being addictive, but I have reduced by half and have not found it a problem at all. Can not imagine stopping coffee altogether though..
Over the years I have known some people who smoke. I did smoke socially many years ago too. A couple of people I know absolutely can not quit smoking no matter how hard they have tried, whereas I stopped many years ago without thinking. I think I just grew out of it. I did not feel addicted or have any trouble stopping.
I am just curious if some of us have different elements within us that makes us more addictive to things?! Just wondering.
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I am 46. This shite started when i was 40, about 6 months after i weaned my daughter.
I have been through hell. The drugs they put me on for menopause symptoms made me very suicidal and i nearly lost my life. The internet saved my life. I didnt know what was happening until i came across tonnes of others online who had the same experience. Thus mynintense dislike of doctors and many western medicines. They have their place though of course.
My cycles are all over the place. Since being off hrt they have come in the following rough sequence of days apart..28, 15, 21, 26, 28, 26. I sometimes ovulate and other times not. Last two months i havent. Periods are a splutter for a couple of days and i dont use tampons or anything. Just a bit of loo paper....too much info i know lol. Hope the bloody things are petering out.
How did yours wind down jari?
Xxx
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I started to get similar cycle mix as you say around 3-4 years before my last period which was when I was 47.5 yrs.
No hot flushes or night sweats at all until a month or two after last period. Then a gap of a few months with nothing and then it heated up! Literally! Lol
I started to get very intense hot flushes combined with sweating a lot. Really horrible. Plus night sweats where I just could not sleep much as always so very hot and sweaty.
I started with hrt after a few months of these horrible flushes. The hrt brought with it, very bad anxiety, fibroid growth, weight gain, but worst of all breathlessness that became frighteningly bad. I had to come off hrt overnight. I think the difficulty breathing was linked to a potential blood clot being caused but I do not have that from the meno specialist. I read that somewhere. Possibly on the leaflet that came with the hrt.
Anyway, all those side effects calmed down and went but the hot flushes came back. I was determined to find a solution. So I started researching and read a lot about natural menopause. I changed my diet and increased exercise. My hot flushes started to decrease. I still get them, now nearly 3 years since last period, but they are not bad now. Far fewer and much milder. Night sweats are rare now.
I just do not know if this would have happened naturally anyway ( as 90% of women's symptoms pass within 4 years of last period) or whether it is the lifestyle change?! Or maybe a bit of both. X
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I also had breathlessness on the hrt, i called it air hunger. Come to think of it I have not had it since going off hrt either.
I think i have had every symptom i have ever read about, its been incredibly cruel. My mum had sudden onset insomnia and that and hot flushes were her worst symptoms. She was on hrt 7 years stopped cold and was fine but still has flushes twenty plus years later. I even have cold flushes.
I believe diet and exercise would make a difference but hard to determine whats what. I need to increase my exercise and also tidy my diet. I went strict vegan last year for 5 months and did feel much better but it was hard going. The weight loss was great i was the slimmest i had been in years.
Since going off hrt i have gained weight. I had severe anxiety on the hrt, felt like i was always on speed so maybe my metabolism has taken a hit. Nothing some clean eating wont fix.
I absolutely believe our brains are addicted to estrogen. An er doctor treating me for a suspected heart episode told me that menopause is like a drug withdrawal for some woman. She said over the years she had seen many ladies reduced to a blithering wrecks because of meno and i dont doubt it as i was one of them.
I think so many ladies symptoms are made worse by all the unnecassary off label drugs they are prescribed which all have side effects, when most of the time hrt solves many meno issues.
It did make me better but i think it also added just as many weird side effects. Like nightowl said, some of our chemical makeups cannot tolerate synthetic drugs.
Xxx
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I agree Stellajane. It is in some ways fascinating how we all react differently to different things and more so, frustrating that we are all having such different experiences so to try to figure out the best path..
I, like you, suffered only the hot flushes/night sweats. I still do get hot flushes, but no where near as they were when they peaked. My anxiety was only caused by hrt.
For me, the addition of estrogen was the problem, or maybe it was just at that stage... not sure. Our own hormone levels change so much at this stage in life, so I guess it is very difficult to try to get the right balance if adding hrt... for me it seemed to be the case..
All the best.. x
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I also had breathlessness on the hrt, i called it air hunger. Come to think of it I have not had it since going off hrt either.
I think i have had every symptom i have ever read about, its been incredibly cruel. My mum had sudden onset insomnia and that and hot flushes were her worst symptoms. She was on hrt 7 years stopped cold and was fine but still has flushes twenty plus years later. I even have cold flushes.
I believe diet and exercise would make a difference but hard to determine whats what. I need to increase my exercise and also tidy my diet. I went strict vegan last year for 5 months and did feel much better but it was hard going. The weight loss was great i was the slimmest i had been in years.
Since going off hrt i have gained weight. I had severe anxiety on the hrt, felt like i was always on speed so maybe my metabolism has taken a hit. Nothing some clean eating wont fix.
I absolutely believe our brains are addicted to estrogen. An er doctor treating me for a suspected heart episode told me that menopause is like a drug withdrawal for some woman. She said over the years she had seen many ladies reduced to a blithering wrecks because of meno and i dont doubt it as i was one of them.
I think so many ladies symptoms are made worse by all the unnecassary off label drugs they are prescribed which all have side effects, when most of the time hrt solves many meno issues.
It did make me better but i think it also added just as many weird side effects. Like nightowl said, some of our chemical makeups cannot tolerate synthetic drugs.
Xxx
Alua, really interested to hear you also had difficulty breathing on hrt.
Someone on here suggested it might have been an allergic reaction. I just do not know.
I have gone pretty much vegan now too and feel so much better for it.
I have ground flaxseeds every day mixed in muesli and a plant based milk. Fruit n veg etc..
anyway going off topic here..
I started a thread way back to see if anyone had had allergic reactions so you may like to check my posts from my profile and see what you think. Also some threads on alternative and this and that re diet, nutrition etc.. all the best! X
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Hello again ladies.
For the last nine months I have been off HRT and continuing with my whole food plant based regime. Perhaps in time my diet will help my hormones to settle naturally but in all honesty that hasn't happened yet. I live in hope though.
Take care ladies.
K.
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Hi Kathleen
I am going a bit off thread here, but I am interested to know your diet as I am also plant based. I will send you a PM if that is ok?
X
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Good news Stellajane xx
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That is great news stellajane and must be a relief for you!
X
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What an interesting thread. I am considering coming off HRT patches. I had a hysterectomy 4 years ago and after a few months was put on Femseven 50 which seemed to take the edge of things; these are no longer available so I've been put on Estrodot 50. I'm not sure if it is them but I've been breathless and feeling 'strange', sometimes hot, sometimes cold. As it looks like our chemist will struggle to get those when my next collection is due, I'm not sure I want to try another so am thinking of stopping. Now, should I just not stop is the big decision. With it being 50 I'm hoping that's not too high a dose to drop down from. Great to read what others have experienced.
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Anxiety was a biggie. However, this breathlessness is getting me down; it might not be the new patch, but I think in a few weeks when I need to renew prescription I will be looking at another form of HRT and not sure I want to change again. I could feasibly cut the patch in half initially?
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This forum clearly demonstrates that everyone has a very individual experience of menopause which is why standard treatments don't work for a lot of people.
In an ideal world we'd come away from a menopause clinic with an individualised 'prescription'. For some it would be HRT in one form or another, for others it would be other pharmaceuticals or alternatives. Some would never feel the need to attend said clinic.
I tried to give up HRT because I don't like taking progesterone and don't like having withdrawal bleeds. If I could take oestrogen only I would never have considered stopping for a moment! My oestrogen only weeks have always been great. So as you see, my experience is TOTALLY different from you ladies who had horrible side effects from taking it.
I was really hoping to hear from ladies who had happily (for the most part) taken HRT for many years, then decided to come off it for reasons similar to my own and had success doing so.
It does seem that such people are few and far between. More often it seems an oestrogen loving body will start to protest when a certain 'low' level has been reached, thus many start to take it again .... and normal service is resumed.
I count myself very lucky in that whether on or off HRT I have never experienced any emotional/anxiety symptoms. With me it has always been about night sweats, flushes and associated skin problems! And that is an interesting subject in itself isn't it?
Hi stellajane. I have been taking HRT for 20 years, latterly 12 years on tibolone, which is a no-bleed and suited me very well. I was very happy on HRT but became increasingly concerned about risks, especially of stroke, although I had no other health concerns, am fit, slim and good cholesterol levels. I began tapering off in January2019, finishing completely in April 2019. Over the past year I have restarted the hot flushes (few night sweats, fortunately) and am doing my best to manage them. The acute anxiety I felt post menopause has not returned. For me the worst symptom now is stiffness in joints and muscles. But I am now retired and trying to take sensible steps to maintain movement and fitness. Just lately, though, I have been tempted to return to HRT simply because that would, I know, clear these things up within weeks. However, I think on balance, I will persevere, though once lockdown is over I may return to my amazing GP for a chat about it.
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Hi Stellajane,
Can totally identify with you that finding progesterone intolerable O time lovely :) but not getting enough now & were getting night sweats so came off HRT 6 weeks ago - mainly concerned after having ultrasound & told signs of endeometriosis. I am now hardly sleeping with nightsweats flushing all day freezing cold feet & hands so really tempted to take it again but so much pain on utro so consider Femoston to try. Defo tried all natural but not tried Mexican yam?
Best wishes,
LB
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I am reluctant to go on HRT for the very reason that I will become dependent on it and won't be able to come off it. Also, from what I could read here Utrogestan seems to cause a lot of problems. It's not fair that we, women, have to go through such a terrible thing that is menopause is. As for the hormones, that have to balance at some point in time. The body would naturally adjust itself to a lower level of the hormones that were once produced by the ovaries. It has to. Also, once you're in your 70s, you would almost certainly be postmenopausal and the hormones should have balanced themselves out so why would you still be on HRT?
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Oh I've just noticed stellajane's gone black. Has she left the forum? Haven't been on much over the past week...that's a pity if so although I know she's come and gone several times over the many years she/we have been on the forum! She usually come back eventually so hope she does again. However she might have also decided to move on, also being in her 60's....
Hurdity x
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Hello ladies.
I stopped my HRT eight months ago and before that I was using Oestrogel 2 pumps daily and Utrogestan vaginally. I have mentioned before that my physical symptoms were never that bad but my mood swings really worried me and HRT didn't help with those.
The only definite change was that two weeks after finishing all HRT I developed VA with burning and itching. I tried several otc remedies but now use YesVM externally morning and night. This has worked very well so far and I haven't needed topical oestrogen. My VA symptoms appear to have resolved without using any form of oestrogen and despite coming off HRT. Although grateful I can't figure out why! Perhaps that part of my body has adapted to it's new low oestrogen state and decided that it doesn't need to complain anymore. With any luck other parts of my body and brain will get the same message soon. I live in hope.
Wishing you well ladies.
K.
Thanks for posting this Kathleen.
I've been in a horrible way with VA since last November after losing weight and getting off citalopram, then getting an infection, then another one :(
So I went on Vagifem but I would have needed it daily, and my hair fell out in handfuls on it, so obviously I'm a very reluctant user, as Vagifem would make me need a wig if I'd used it as much as needed.
I felt better on the pills and gel initially but the indigestion and bloating, and mood swings, are becoming unbearable so I'm tapering down. Thanks to Jane Lewis' marvellous book I'm using Olive and Bee for the VA, plus a bit of Ovestin, which I was on before.
Your post gives me hope that I've resolved my VA symptoms enough to manage it with Ovestin, Olive and Bee and Multi Gyn Actigel. So thank you :)
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I am so sorry to hear this stellajane - I was really hoping it would be different for you this time! Also for the very selfish reason that it would give me impetus to try - but provided my health lasts out I think I will keep going for a wee while longer, much as I hate the bloody bleeds - and prog itself and withdrawal....!!!! Good luck with the doc and do report back!
Hurdity x
Hello Stellajane/Hurdity,
I came off HRT on 01 May 2020, so just 5 or so weeks in. I started a slow taper in June 2019 from 2mg Ostradial gel to 1mg in October 2019, then from New Year's missing a day once a week, then applying on alternate days, then applying 0.5mg every other day up til April. I phone the GP about reducing the Utrogestan tablets, she recommended that I take the plunge as I was already taking a very low dose of Ostradial. And it would save me from enduring another bleed. At this point I very rarely got any symptoms except mild hot spells and migraine.
With regards to symptoms, atm, I am experiencing mild hot flashes in the early hours of the morning, which sometimes wakes me up. But I just throw the duvet over onto OH's side, and we have Dyson cooler on most nights now. In the last few days I have experienced heart palpitations and jitteriness. I have also been experiencing GMS including vaginal dryness & cystitis type symptoms (However, the urine sample came back negative for cystitis). The Dr offered me vaginal estrogen tablets. However, before I move on to them I will continue with OTC Replens moisturiser. Though not sure if that is a LT solution as, as you write Hurdity, the symptoms only worsen over time.
I have been on HRT since 2016 (after experiencing early peri-menopausal symptoms at age 40) and had enough of the cyclical bleed, not only that but my fibroids had increased in size and was causing so much discomfort and pain during the withdrawal bleed that after seeing 3 Gynecologists; 1 NHS & 2 private, they all recommended partial hysterectomy. I did not want to go down that route for many reasons, but I also learned that you have a 15% chance of developing a prolapse, where other organs like the bladder can slowly slip down the vagina as essentially the scaffolding of the uterus is not there to hold the organs in place.
So since November 2019 I have changed to a vegetarian diet, cut out spicy food, which is hard as I love my Indian food, increased my exercise including Yoga. So far this has helped with the overall symptoms of not using HRT, and fingers crossed will shrink the fibroids too.
When I get heart palpitations, I use deep breathing exercises and exercise self-love i.e. saying positive affirmations.
I am managing some hair loss/thinning by not using shampoo and conditioner and washing hair every two weeks. But I think lockdown has lot do answer for with regard to this new lifestyle change. Only last Sunday, I washed my hair with water and diluted Apple Vinegar Cider. And I have what appears to be voluminous soft hair, but I digress.
I think it is worth investigating what other cultures do to help alleviate menopause symptoms from diet, exercise and a lot of self-care, otherwise, from the way I see it, it is a lifetime of medication to correct side affects from using or not using HRT.
Stellajane, this non-HRT path will take a lot of resilience and experimentation. I wish you well on this road.
Hurdity, I wish you well when you take the plunge to taper down again.
With love,
Chikabee
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Hello again ladies.
Chikabee - thank you for your post. It is so helpful to learn from other people's experiences when trying to come off HRT.
My tender breasts resolved shortly after stopping Utrogestan and VA only became noticeable a few weeks after finishing Oestrogel. I am now coming up to a year without HRT and I've noticed some mild flushing however mood swings and jitteriness continue to bother me daily.
Wishing you well and keep us updated.
K.
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quote author=Hurdity link=topic=46929.msg754965#msg754965 date=1581095231]
Hi, New to this forum and not 100% clear how to put a post on here! Desperate to off load especially as I am 6 months of HRT and suffering far too much and not sure whether to go back on HRT but I get told that if I went back on it then I would still go through all the symptoms again no matter what age I stop!! I am 56yrs and was classed as premenopausal
around 7 years ago and went on HRT as a result. Apologies if Ive posted in the wrong place!
Hi stellajane - you might want to also post in the main section as I imagine there will be some very helpful posts about how to come off and how people felt with different ways of doing it. I am also interested in this as I am sure I will try to come off once more at some point as I get more and more fed up each cycle with the progesterone and the bleed - not fun in your 60's as you know. We've both been doing this a long time!
The only time I tried to come off it was a sudden stop - basically ripped off a (Evorel) conti patch (my first after trying to change to conti HRT after cyclical HRT) in disgust because I got a migraine the day after I started it, and it was the progesterone withdrawal migraines from the cyclical HRT that led my doc to suggest the conti. So I went from 50 mcg to zero. Nothing for a few weeks but the symptoms just crept back - the flushes began to appear, and then the night sweats and then I got symptoms that I hadn't had before starting HRT - like lower back ache and pelvic pain. Also the menopausal acne/rosacea/hot itchy patches or whatever it was started coming back on my cheeks. Really not pleasant - all of these symptoms disappeared when I went back onto it.
Also when I tried to reduce (from 50 to 37.5) after doc suggested my dose was too high after I turned 60 - again after a few weeks even this small decrease led to my getting warm and restless at night so I went back up to 50 and all was OK again. I've never given it long enough to see if the symptoms subside or not - mainly because I was working in a demanding role where I needed to be on the ball and give out lots of energy, so mopping my brow and flaking out just didn't come into it. I'm retired now but still that state of being does not appeal - even going through it for say 9 months!
I really dread the thought of stopping and don't know when I'm going to take the plunge but I may wait until I'm 70 if I live that long. Whatever happens I plan to do it very gradually starting with reducing the testosterone (but also can't face the thought of all those aches and pains again) and then the oestrogen - and I will be glad to see the back of the progesterone.
You are brave for taking this step so all the best with it. Be sure to let us know - and in the main menopause board where more members will see your posts! I will be very interested to read how you get on!
Hurdity x
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Hi - I wanted to detail my experience about stopping HRT. Over the last 5-6 years I have taken first taken tablets but then in a desire to come off HRT (due to horrendous migraines), I stopped for approx 7-8 months (sheer HELL) and then went onto oestrogel and (eventually) provera.
I felt wonderful apart from the migraines, which unfortunately did not abate and got worse.
I am 56 now and figured I was probably through the worst of it (though how can you ever tell) so at the beginning of this year, I decided to reduce my dose in order to taper off completely. This is the only way the migraines were ever going to abate.
I reduced my dose from 2 pumps to one every third day, then one every other day and then one per day over a 2 month period. I then skipped every third day and so on for another 2 months till eventually I was down to one pump per week. Then stopped completely.
What came back - I count myself extremely fortunate that all that happened was that I get hot flushes but nowhere near bad enough for them to disable me. I did however, notice a level of paranoia and mood dip occurring (which I suspected would happen) so with the assistance and advice of a wonderful practice nurse at my surgery, started taking 10mg Citalopram (which I believe is the lowest dose you can take). My mood picked up tremendously. I did a couple of months in try and reduce the citalopram dose, but the paranoia etc came back. My plan is to stick with it until the hot flushes start to subside and then try and taper off.
I have started taking high strength turmeric, omega 3 and calcium as supplements but have noticed my joints are definitely stiffer. I'm going to start a separate thread for help with that. The great news is, my migraines have all but gone.
please do ask if you want any further info :)
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Hi,this sounds just like me.Stopped hrt last Sepr due to awful migraines.All ok until June 21 and flushes are back also insomnia only slept 5 -6 hrs most nights.
Im now wondering about seeing it through for another month,if im constantly tired might have to restart hrt,however i dont want the migraines back.
If i can sleep i can handle most of the problems.I might look at a low dose as at 55 im hoping most things will settle in few months!
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Hi Everyone,
Why can HRT make things worse and it's supposed to make you feel better? Where is the logic in this?
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Hi Karine T,
The body is as complex and as individual as a fingerprint. So no matter how well-designed and well-intentioned the HRT - there will always be those who feel worse on it. I struggled on various formulations for years. I got a mix of painful varicose veins, migraines, raised blood pressure, mood swings, terrible anxiety, and finally when I was changed onto Oestrogel - I had terrible acid indigestion and nausea which resolved when I stopped the HRT. I would like to be able to continue on it forever but it just doesn't suit me.
In the meantime, my twin sister is sailing along, very happily on HRT without a single side effect. Similarly, two friends are very happy on it. However there is another friend who had to stop it because of torrential periods. So you see? Never plain sailing when you're talking about the human body with its diversity and fluctuations.