Stopping HRT - Positive stories??

Hi I’m totally new to the group. I’m currently waiting for a total hysterectomy and have come off taking HRT as I shouldn’t really have been on it due to having breast cancer but chose to take the risk because I was suffering badly with hot flushes and night sweats. I was advised to come off it as I was over 50 and my risk had increased of the cancer reoccurring. Since coming off HRT I’m like and old woman and my legs and hips/knees really ache. Is this common or totally unrelated as I’m normally very active so not exercise related pain?

I am 69 and am going back on it. Most of my friends are using the cream now. Skin improves and remnants of hot flashes will go away. Lots of investigation done and now some doctors are saying it is ok if you have no complicating factors. We get it through the Indian pharmacies.

Thank you paddyann, I will look into that!

ALLATSEA ask for a referral to the menopause clinic,a lot of GP's have very poor and out of date .knowledge of the menopause.

I took HRT for 10 years post hysterectomy. I came off it gradually and was perfectly fine apart from intermittent flushes which tapered off. Now a further 10 years down the line and no problems.

I had a hysterectomy and removal of both ovaries at age 40 and was put onto HRT immediately. It was seen as wonderdrug at time. 20 + years later and after 3 attempts to come off, I decided to persevere. I have been HRT free for 18 months and I still can't sleep due to night sweats and overheating. I have aches and pains and generally feel low. My GP is extremely reluctant for me to start HRT again though I have told him that I have weighed up pros and cons etc and want it!! I am now self medicating on Black Cohosh Root, which seemed to give great relief to start and no sweats at night. After 2 weeks they seemed less effective but I will continue for a month. If no improvement I will go back to GP and be more demanding that I go back on HRT!!!

I've been on HRT for about 9 years ,I'm 63..I was having the most horrendous menopause that it could have ended my marriage ,we couldn't sleep in the same bed ,sheets had to be changed sometimes twice a night and more because of the sweats,of course no sleep made me a misery and I had a lovely wee collection of other symptoms including very heavy bleeding.I attend a menopause clinic and the specialist there has said I can stay on HRT for life ,it has taken afew wrong pills before he found I am better on patches so I've been on those for two years and I feel great .It also protects against osteoporoosis which my mother and granny had .So I'm happy to stay on it.My sister is 68 her doctor took her off 18 months ago so she asked for a referral to the clinic and she is now back on it too ,like someone further up the thread said its about quality of life and I'm not risking gonng back to how I was.

It's been about five years since I was taken off of hormone replacement therapy by my doctor. The symptoms were pretty severe at first but I was given other medications to take that would alleviate the symptoms until I got through the first stages. I wish I could remember what they were, but I'll try and find out so I can let you know. They helped a lot!

Agree!

I've been on Premarin ever since I had a hysterectomy donkeys years ago. I've tried to come off twice. Once stoping dead (male doctors instruction), and once over a year (lady doctor who said weaning off slowly was absolutely necessary). Both times I turned into a VeryNastyPerson with hot and cold sweats etc. The Works. Now I've been told that Premarin, being a natural oestrogen replacement, is actually good for you! Helps to prevent osteoporosis and dementia, and the chances of breast cancer are much less than previously thought! I'm staying on it!

Nearly two weeks back on the HRT and am feeling so much better already. This is the first day I haven't had hot flushes and my aches and pains are improving so much. Think I am probably suited to staying on it rather than off it! Ass Esspee says quality of life is everything.

Eloethan,
Your neighbour has a right to decide for herself whether she should continue with her HRT. I am assuming she is intelligent enough to weigh any risks against the benefits. Clearly she is articulate enough to get the GP to back off.
The menopause clinic I attend had a period where they couldn't obtain the implants and the nurses who were around at that time still tell new staff how bolshy we all got when told there were none to be had. There was almost a riot!
We are a very assertive group of ladies and all of us intend to continue on our HRT for ever. Quality of life is everything.

I took HRT for ten years - with a break midway. I still get the occasional hot flush and don't sleep well (but I think that's down to other concerns)

I've upped my exercise as well - both cardio and strength... I tell myself it helps

My hair is a lot thinner finer and I've had to change skin care because it has become old and wrinkly much drier - but I'm guessing that's just down to old age ?

I came off HRT a year ago as I was 60 but have had terrible aches and pains which I never had before. Lots of hot flushes and restless nights. I am fit and active and after a well woman test found me very low risk of vascular disease, I went back to the doctor yesterday and asked to try HRT for another year just to see if I improved. I was expecting to have to insist but she was very well informed and said that the latest research now shows that some women with low oestrogen problems are better off actually staying on a low dosage HRT for long term. Research obviously keeps changing but I think you know your own body and your needs at 60 better than anyone else! I was so relieved I didn't have to push though!

Saw the GP yesterday. He frowned when I told him I hadn't taken the anti depressants but I explained why and he said if I am coping after this long then I should be ok.
He was very nice and accepted that I would know if I got to the point I needed any meds.
Thanks for the input everybody x

I was on HRT for many years, must have been 10 or 15. Then there was a scare on and I decided to stop taking them. I was already 'forgetting' to take them some days, so I just stopped. I noticed no difference at all. If you don't want to take the anti-depressants, I would just not take them. You can always start on them if you find you need them. Your GP will understand if you prefer not to have them, don't feel you have to apologise.

Well, it has been 29 days since I last took my HRT.
I am having a few hot flushes, especially at night before I go to bed and whilst trying to get to sleep!
I have also had a few palpitations and panicky feelings but they don't last long.
I am hoping they don't get worse and it all settles down. I was supposed to see the doctor last week but he was off ill so am going on Friday.
I really do not want to take the anti depressant

I had an early menopause after an emergency hysterectomy when I was 40. Took HRT for a year or so and then stopped with doctors agreement. No problems at all and I am now 65, so you, like me could well be one of the lucky ones. I hope all goes positively for you.

Cambia and glassortwo Thanks.

I have had joint and muscle aches even whilst on HRT. I know it could be easy to blame everything on either being on or off the HRT.

Its been about 12 days now without HRT and although at first I was a bit down ( because I was worrying probably!) I have been ok since.
I have noticed some hot flushing in the evenings but nothing too bad.

It is early days yet so I know it could get worse but I have decided to stop dwelling on the negatives all the time. No point in worrying about stuff that may never happen.
My main stress is I may lose my job soon and the prospect of finding another at my age is not going to be easy. Thanks to Pension changes, I have to work until 65 and 3 months! I have had my retirement date changed twice!
None of this helps when I am trying to cope with no HRT amongst other things

max I weaned myself off HRT last year after being on since I was approx. 45, (almost 60 now).

I have had some flushes and I am feeling weary and have joint ache but I cant make my mind up if its the HRT or having full time care for a not quite 2yr old ,7 and 9 yr old DGC and running a household of 7 with no help.

I have had some depression but have put that down to the horrendous year I have had.

I find that I am also having difficulty finding words again, which was one of the main reasons I re-started taking HRT as I couldn't function at work, but being at home with the DGC that's not such a big worry, only when conversing with adults do I look like a absent minded old biddy.

But I seem to have come through the other end almost intact and maybe its for the best that its over and done with, and I couldn't have functioned without the help of HRT.

So I feel it has been a positive experience as my withdrawl symptoms have not been anything like my initial symptoms.

I had HRT on and off from 50 to 60 but stopped a year ago as my doctor said five years was really the limit as there is the link to breast cancer. At the same time I was prescribed a mild anti depressant as I really was struggling with IBS. I had previously refused the anti depressant as I wasn't depressed! A year on, the IBS is so much better, as the anti depressant seems to relax the gut and stop the spasms. I do suffer from hot flushes but I think these are beginning to get slightly better. I am due for a review in March and will stop the AD's then for a while to see if I can manage without. I don't have the mood swings that originally sent me for HRT though.

If using HRT means that symptoms are alleviated but will re-emerge at a much later age, I can't see the point of taking it in the first place

I wish now that I had persevered years ago and not gone on hrt but my doctor did explain that there are real benefits for a few years but he said the risks outweigh the benefits after age 60.

I don't think it can be healthy for women to continue HRT when they are a long way past the average age of the menopause. If using HRT means that symptoms are alleviated but will re-emerge at a much later age, I can't see the point of taking it in the first place. I think it's more likely that any unwelcome effects of ceasing HRT will subside over time.

A neighbour of mine, who is I think 69, was told by our GP that he would no longer prescribe HRT. She kicked up so much fuss, threatening to complain to all and sundry, that he didn't carry this through. I don't think it is right that a patient - who often has limited medical knowledge - should be able to override a doctor's opinion in this way.

People whose bodies have become habituated to any sort of substance may well experience disturbing side effects when they cease taking it. But we don't say "You'll feel really awful if you stop drinking/smoking, etc., so you'd better carry on".

Ha Ha Greyduster... It is like being a child scared of the teacher telling you off!
I get really annoyed with GPs because one tells you one thing and another tells you another.
One GP told me I should wean myself off HRT slowly - and then the so-called expert on menopause GP told me that its either take it or not and to come off it immediately!
The problem I have is that if I read the leaflets about side effects I worry and then imagine I have them..

My daughter in law was put on Beta blockers because she gets heart palpitations. Another GP told her she shouldn't be on them and to stop taking them. Then the first GP told her she needed to go back on them. The poor girl is stressed out and doesn't know what to do.
It would help if we could always see the same GP but those days are gone where we live.

Like some here, i was on HRT for ten years before the doctor suggested it was time to stop taking it. No weaning off. I honestly don't recall there being any particular side effects to giving it up. I certainly didn't go back to being the horrible semi-deranged person that the menopause made me into - HRT gave me my life and my marriage back. But all good things must come to an end i suppose. I know what you mean about being nervous about telling your doctor you haven't taken what he has prescribed. I was prescribed a vaginal oestrogen pill recently to help with a slight prolapse. I asked the doc if there were any side effects and she simply said no. When i read the leaflet, it is a hrt drug and there are all the same sort of risks, and possibly bleeding, that you can have with hrt. I don't want to have to go through that again at seventy! So i decided, for good or ill, not to take it, but i haven't come clean yet.

That is very reassuring Irene2108 Thank you.
I don't mind if I get a few flushes and I know it may affect my mood etc. I am prepared for that.
Its just that I have read so many stories of it being horrendous. I suppose people who don't have a bad time don't go onto forums and talk about it as much as people who struggle?
Well,..its been 7 days now and I am ok at the moment!