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[meno-mel]

I wrote a long post in personal experiences, but noone replied, so I'll keep it short here.

Has anyone stopped trying, quit everything and been better for it?

I think it might be my best option, but I'm scared of how I'll feel after 16 months of HRT, will my symptoms be worse by now?

[Penguin]

I don't know the answer to this but am thinking of doing the same!l to get rid of niggly hrt side effects which I am sure are related to estrogen fluctuations. Would also like to know if I stop, then will restarting put me back to square one with initial side effects again.

Were you far into peri when you started hrt? It's so hard to know what our own hormones are doing isn't it, that's why I would like to stop.

[meno-mel]

Were you far into peri when you started hrt? It's so hard to know what our own hormones are doing isn't it, that's why I would like to stop.

Totally impossible to predict what my body will do because I was a year+ post menopause before starting HRT when I was 52.
I was given conti for the first year because I was post meno, but I've bled for five days every month since starting HRT, they say that doesn't happen in post meno so now I'm rediagnosed as peri, that only happens in peri.
Now I'm on sequi HRT, but I enjoyed not having periods, inside my head I felt better than I had in decades, perhaps since puberty? It was the hot flushes and increasing incontinence that got me to the GP's and I wonder would I go back to being post meno if I stopped HRT?
I expect I would.

[Penguin]

I wonder if there are other things you could take to help those symptoms then, aside from hrt? It's bloody hard to know isn't it.

[Katherine]

Hi memo-Mel

I tried stopping hrt twice due to side effects of utrogestan and was ok at first but by the 9 day mark I felt nervous, anxious, and I just couldn’t feel good at all. Worse than when I began hrt. However that might br because I stopped suddenly. The general consensus seems to be to reduce gradually and I would do it with the help of a gp. To reassure you though, it only takes a couple of days if going back on hrt to get back to where you were before you stopped. I hope that help. Sending hugs x

[Ermin2trude]

Oh meno-mel,

I’ve read many of your posts over the last few months, and I sense your frustration, anger, disappointment and general ‘pulling your hair out’ with the medical profession, HRT and being meno/post meno/peri meno. It’s bloody hard isn’t it?

There are so many things I don’t understand beginning with why you haven’t been sent for a scan on a 2WW. All the NHS pathways state that you should have been, whether post meno, peri meno etc.

Anyway, as for stopping HRT, there’s a lovely post recently by Mollymoo called ‘thoughts’ (31st July) who stopped 4 months ago and feels so much better. I’m currently in the process of quitting. A wayward Mirena (awaiting a complex coil removal procedure) is holding me back but I have stopped the oestrogen and I feel good about it.

In many ways, for me, much of the pleasure in quitting HRT will be the freedom from the NHS, my GP and banging my head against a brick wall. It fuels my anxiety and I feel I have no control. My mental health needs addressing. I don’t want to need antidepressants because I’m on HRT…..which is very definitely where I will be heading if I continue.

There are so many alternatives out there, particularly for bone health, heart health etc and so many positive posts from ladies  who are HRT free. I’m not averse to localised oestrogen for VA, but in all other respects, I am going au natural.

If you do decide to go that way…….I wish you so well and will follow with interest. Let us know what you decide and how you get on.

PS. I just noticed somewhere else that struggled with the Mirena turning you into a zombie and that the effect was reversed as soon as it was taken out. That gives me hope. My gynaecologist insisted I had a Mirena and his opinion was supported by my menopause specialist. It’s been hell on earth. I’ve become a joyless, depressed black hole with zero hope, motivation, confidence since it was put in. You are constantly reassured that it’s very easy to remove if you don’t get on with it. Well that’s a total lie. Utter and complete fiction. Mine has embedded itself where it shouldn’t be, is causing all kinds of problems,bleeding, infections, pain etc and it’s still a 70 week wait for removal on the NHS. I am saving up to go privately.

[MrsE!]

Morning mono-mel,
  No doubt you've read all the lovely posts from other ladies.
I'm currently on Nadal for menopause stuff. Is it helpful.?
Haven't got the foggiest. However I'm sleeping better now than recently ,possibly due to exhausted body. I'm very lucky to be able to go private via husband health care plan and see a menopause specialist. Because of age, time between having a period etc.  Am I now in the transition stage from perimenopause to menopause. I've got the magazine as well and I can spend ages reading through what other women are doing or not.  Ultimately it's how you feel emotionally, physically and mentally. I've been keeping a diary every day rand looking back it's interesting to read how my emotions really were. I thought I was having a good day,  apparently not according to my husband and my diary. Ouch.  Listen to your body, & your friends x

[Nas]

Crikey Ernin2trude, a 70 week wait to get the mirena removed? What the actual hell!!! That is outrageous. In your situation, i would have thought it would be an emergency? Good lord. Why the hell should you have to pay to get the thing removed? I hope they bump you up the list ASAP.

Meno, only you will know how your body will react, if you withdraw from HRT. If you do decide to go down that route, do it slowly, else the body might go into shock. I have tried umpteen times to come off, but each time, I am worse off, mentally, than with. I just stick to a medium strength patch and a coil now. No messing with anything else. I do have a fibroid  which is growing outside the uterus wall,  which I think is giving me bother, pain wise. Kind of wishing I’d never touched hormones now , as I’m wondering whether the oestrogen has fed the fibroid. But that’s another pile of shit for me to deal with ( the pile is getting bigger by the day!)

Eventually the body will level out, it has to. Then you can decide which ( if any symptoms) you can live with and which you can’t. It’s all trial, error and a bucket load of patience unfortunately.

There are many supplements out there that can aid bone/ brain/ heart health. Something has to work.

Remember, only a small percentage of UK women actually take HRT. That means many are fine ( or struggling silently ) but it certainly isn’t that silver bullet that Davina leads us to believe. Simply A tool in the box which could help.

Good luck with whatever you decide to do 🤞

[meno-mel]

Than you for such kind replies. Ermintrude how can they possibly leave you with the mirena embedded and causing pain, bleeding and infection for 70 weeks? That is outrageous, I also thought it would be an emergency and you'd be seen within two weeks.

I've only heard of the 2WW for the NHS here on this website, I know at the hospital there's a long waiting list for scans and I'm not urgent. Perhaps if they thought it was an emergency they'd aim for 2 weeks?

As it is they were able to rediagnose me as no longer post menopausal, so no longer any rush to see why I'm bleeding!
I wouldn't accept that if I thought something was wrong, but I've never had fibroids or abnormalities and I don't feel like anything is wrong in there. I just get periods again because they gave me HRT. So did my mum, she stopped HRT because she got fed up with the side effects, that's as much detail as I've ever got out of her.

If I was actually worried about the bleeding I'd have gone private, I'm lucky enough to be able to pay if I need to and if I had any faith in the doctors, then I'd do that, but it's the same doctors as in the NHS, so I'll wait to get the free service simply because I don't think it will be any help, so I'm in no hurry. I don't agree with the politics of making people in poorer regions pay privately because the funding gets diverted to reward tory voters, according to the tories anyway. I've never agreed with anything they do anyway so nothing new there.

I don't mean to be down on doctors, my own son is a junior doctor (striking) and the good ones are amazing people, but a few are bad and get in the way between patients and the suitable treatments.

Nas, is it only a small percentage of women take HRT? I hadn't realised.

Women our age that I know are either on HRT or can't because of cancer and two are vegan and don't trust it. My mum felt better without it and I might, but I thought that was the exception, not common? Google says 80% of women have symptoms. Are they just given non hrt meds like me until I was post meno? The first time I was post meno that was, lol, google insists that to be post meno is for life. But not for me, I was postmenopausal for a couple of years in my early fifties, because I had no periods for over a year and wasn't on any hormones. Now I'm peri-menopausal again because only peri women can produce regular periods for a year on conti. It's so confusing.

[Mary G]

Far too many women are taking far too much progesterone which is suffocating the positive effects of oestrogen and making them feel terrible. Unless you are progesterone intolerant, the right dose of progesterone administered in the right way is actually beneficial.

Utrogestan is not well tolerated and 100mg is too big a hit in one go.

You need to adjust your HRT dose as you get older and sometimes your regime can just stop working.

I have found I feel much better since introducing a low dose of amitriptyline to my regime - it's an AD but doesn't act as an AD on low doses.

I'm on one pump of Oestrogel, 50mg progesterone gel and testosterone every day and it works well.  10 years ago I needed more oestrogen but now I'm OK as long as I don't dip below 300 pmol. I'm 62 and well over 12 years post menopause.

It's probably better to change your regime rather than ditched HRT altogether as so many women do.

[Ermin2trude]

My understanding is that only 15% of women aged 46-64 take HRT in the UK.

Anyway, the Mirena……so I was referred urgently by my GP to the hospital (I live in the true blue farming county of Herefordshire……if the tories put up a fox as their candidate it would still win), who said they couldn’t see me until I had an ultrasoundi in the department next door to gynaecology. So my GP referred me  for a scan under the 2WW pathway. Had the scan, referred back to the next door department as an emergency. That appointment is currently a 70 week wait and getting longer. If my GP had used the term ‘expedited’ in the referral instead of urgent, it is a 33 week wait. He is now rewriting his referral letter.

Such is the state of the NHS. I just feel very fortunate I’m not waiting for an appointment for an oncologist or anything which could be terminal.

[CLKD]

Is there no shorter waiting list at other Hospitals within travelling distance, patients do after all, have a choice as to where they are referred.

70 weeks ........ awful.    And your GP should KNOW how to refer  though I hope that should any scan show anything untoward, the patient would be fast(er) tracked 

[Kathleen]

Hello ladies.

In 2019 I decided that I would come off all HRT and see where I was naturally. My last period was in 2010 and I started HRT in 2013.

I was using Oestrogel and Utrogestan and I weaned myself off Utrogestan first and then Oestrogel gradually over several weeks.
Initially I didn't feel any different, no better but no worse and I was hopeful that my body would adapt to a 'new normal'.  I think it was about 4- 6 weeks later that I noticed some physical symptoms reappearing namely hot flushes and night sweats. I then noticed for the first time the burning and itching that comes with VA. I then realised what other ladies here on MM were experiencing every day! I bought some creams etc and tried to get on with it. I thought that I was coping okay but then the emotional symptoms began and I really struggled with those. I began having crying spells that would come out of nowhere. I would literally sob for no reason. This had a huge impact on my life because I worried about bursting into tears when chatting to someone in the street or just going around the supermarket. I would often have to stop eating my lunch half way through to have a cry before gathering myself and going back to eating. It was completely beyond my control and I would explain it by saying it was a sort of reflex, for example we have all just paused a conversation by saying ' just a minute I need to cough or sneeze ' well I felt that I needed to say ' just a minute I need to sob uncontrollably for a few minutes and then I'll get back to you'.
By now it was the end of 2019 and I saw my GP which was probably one of the last face to face appointments before COVID and lockdown. I explained what had been happening and he said my problems were due to coming off HRT and he suggested I go back to it. I accepted his prescription but I also contacted Newson Health and became a patient of theirs.
I have been on HRT ever since and although I feel better physically, mentally/ emotionally I am still struggling.
Ironically I am now using a medium dose of gel and I am seeing a return of the physical symptoms that I thought I'd said goodbye to! The emotional rollercoaster continues unfortunately.
Sorry for such a long reply but it may be of interest to someone and despite the poor outcome last time I may try and come off HRT again in the future. I may indeed feel awful but at least it won't be because of any Oestrogen or progesterone that I have added to my body in the vain attempt to balance my hormones lol.

I agree that most women don't use HRT so it is clearly possible and possibly even preferable!

Wishing you all well ladies and take care.

K.

[Penguin]

CLKD has a really good point, with choose and book Ermin2trude you should be able to find a different hospital with a shorter waiting list (if one exists). They will want you to stay within the Trust but I believe you have a right to request elsewhere.

[Ermin2trude]

The other hospital in the trust (Worcester) has a waiting list of 53 weeks for the most urgent. I’m told this is better than the national average. 😔🤕