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Menopause Matters magazine ISSUE 63 out now. (Spring issue, March 2021)

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Author Topic: Positive Experiences coming off HRT after many years  (Read 6260 times)

Jari

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Re: Positive Experiences coming off HRT after many years
« Reply #60 on: March 17, 2020, 09:09:42 AM »

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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Jari

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Re: Positive Experiences coming off HRT after many years
« Reply #61 on: March 17, 2020, 10:58:59 AM »

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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Kathleen

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Re: Positive Experiences coming off HRT after many years
« Reply #62 on: March 17, 2020, 05:00:02 PM »

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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Jari

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Re: Positive Experiences coming off HRT after many years
« Reply #63 on: March 17, 2020, 07:35:12 PM »

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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Dotty

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Re: Positive Experiences coming off HRT after many years
« Reply #64 on: March 19, 2020, 07:36:13 AM »

Good news Stellajane xx
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Jari

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Re: Positive Experiences coming off HRT after many years
« Reply #65 on: March 19, 2020, 07:40:12 AM »

That is great news stellajane and must be a relief for you!
X
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Mary5

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Re: Positive Experiences coming off HRT after many years
« Reply #66 on: April 20, 2020, 05:40:31 PM »

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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Mary5

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Re: Positive Experiences coming off HRT after many years
« Reply #67 on: April 20, 2020, 06:57:09 PM »

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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pease

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Re: Positive Experiences coming off HRT after many years
« Reply #68 on: May 03, 2020, 09:55:25 AM »

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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Ladybird 2

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Re: Positive Experiences coming off HRT after many years
« Reply #69 on: May 16, 2020, 08:34:46 AM »

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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KarineT

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Re: Positive Experiences coming off HRT after many years
« Reply #70 on: May 16, 2020, 06:33:12 PM »

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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Hurdity

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Re: Positive Experiences coming off HRT after many years
« Reply #71 on: May 17, 2020, 06:42:05 PM »

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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CherrySG

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Re: Positive Experiences coming off HRT after many years
« Reply #72 on: May 30, 2020, 06:14:06 AM »

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  :)
« Last Edit: May 30, 2020, 07:00:22 AM by CherrySG »
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Chikabee

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Re: Positive Experiences coming off HRT after many years
« Reply #73 on: June 09, 2020, 08:56:15 PM »

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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Kathleen

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Re: Positive Experiences coming off HRT after many years
« Reply #74 on: June 10, 2020, 03:21:00 PM »

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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