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[Jane50]

Hi all,

I'm 56 and have been on varying types and doses of hrt for 7 years with varying success. Currently on 200 patch oestrogen twice a week, 200 utrogestan every 2 weeks and blob of testogel daily. Also vagifem daily.

I'm progesterone intolerant so struggling when on that part and also have adenomyosis which causes heavy, painful bleeds. So continuous progesterone not an option and I don't fancy the mirena.

I'm aiming to come off hrt to see if my periods have now stopped so I can be bleed free.

A week ago I cut a 1cm strip off one of my patches which equated to about 8% reduction. I've had bad headaches and unsettled stomach since. Could be coincidence - so difficult to know.

I know we're all different but would anybody have any experience of symptoms coming off hrt and whether an 8% reduction would be felt in the body straight away? If so, is it likely to settle down? I'm aiming to come off over 3-6 months.

[joziel]

Menopause is a lifelong state of hormone deficiency. You will very likely have symptoms forevermore if you come off - plus you will be subject to all the increased risks of low hormonal state, such as osteoporosis (1 in 2 women will get osteoporosis if you don't take HRT), arthritis, poor lipid panels leading to high cholesterol, increased risk of heart disease, increased risk of dementia, increased risk of bowel cancer - and so much more besides.

All so you don't have to bleed....? I get the painful periods, but there are other things to try.

Really, I would try the Mirena in your situation. It is known to stop all bleeding and address adenomyosis.

There are also many other progestins you can try which might suit you better than utrogestan and would be better than coming off all HRT: https://thebms.org.uk/wp-content/uploads/2023/04/14-BMS-TfC-Progestogens-and-endometrial-protection-APR2023-A.pdf

[Jane50]

Hi Joziel, thanks for you reply.

I suppose it's probably wishful thinking my behalf - bleed free and more stable hormones...but yes, you're right , permanently low oestrogen levels can incur health risks.

I'll give the mirena more thought again. I've come close to having it a few times. It's anxiety stopping me. Nothing logical.

I have tried three different progestins and I suppose I could continue the fun game of trial and error.

I guess I was looking to get off this merry-go-round but I don't want to end up on The Black Hole ride instead. 

[Ayesha]

Menopause is a lifelong state of hormone deficiency. You will very likely have symptoms forevermore if you come off - plus you will be subject to all the increased risks of low hormonal state, such as osteoporosis (1 in 2 women will get osteoporosis if you don't take HRT), arthritis, poor lipid panels leading to high cholesterol, increased risk of heart disease, increased risk of dementia, increased risk of bowel cancer - and so much more besides.

This post reminds me of the leaflet that comes in the Vagifem box, alarmist, scaremongering nonsense which I screw up and place straight in the bin.

What is important is to lead a healthy lifestyle as we age, diet and exercise is important, taking supplements to help the digestive system because we tend not to tolerate some foods. Systemic HRT is not for everyone but we should not be scared if we decide not to take it of any possible nasty Illnesses happening to us if we don't!

Jane50,  I stayed on HRT for five years in my fifties and was relieved when I came off it, had enough of the side effects and at age 75 I am fit and healthy with no terrible effects of not being on systemic HRT. You won't know how you will feel until you come of HRT but if symptoms become unbearable then you have the option to go back on it.

Just a curious question, you say you are on Vagifem daily, have you ever been questioned as to why you need to take a daily dose. Because of the out of date leaflet in the box I have been asked a few times by various medics as to why, would love to know your experience if any. 

[joziel]

Jane, you can always just have the Mirena removed if it doesn't work for you. It's your body, so you get to decide. What are the progestins you've tried and at what dosages?

Ayesha, there is scientific evidence behind every statement I made there (unlike those on the Vagifem packet, which are warning against using HRT), so it's definitely not 'scaremongering nonsense'. It's every woman's right to decide whether to use HRT - but she should be given all the information and accurate pros and cons before making that decision. No point avoiding bleeding - and then ending up with osteoporosis and breaking a hip in your 80s.

[Jane50]

Thank you Ayesha for sharing your experience.

I completely agree with leading a healthy lifestyle. I've just purchased a treadmill and eat healthily with the aim of giving my body a fighting chance if I come off hrt. What supplements would you recommend? I drink Kefir to help my digestive system currently.

Yes, I was hoping to come off and see where I'm at and if necessary I would go back on it. I was just wondering if anyone experienced symptoms whilst  coming off and whether their body adjusted to a steady reduction?

I just find I'm more comfortable down there if I take vagifem every day. Otherwise I get prickly and dry and also bladder issues. GP and pharmacist both fine with me using it daily as such small amount of oestrogen.

Thank you for giving me a positive response of your experience - it's much appreciated.

[DottyD68]

Hi Jane50,

For some menopausal women who try HRT (many women don't and live to a ripe old age without any health issues) it is not the magic bullet. I reluctantly tried it and found that although it alleviated a couple of symptoms it caused many more. It left me in a position that I wasn't sure whether my large list of symptoms was because of my own body or because of the HRT. I couldn't wait to come off it as it was causing me more health anxiety trying to work out what was going on. I tried more, less and different types and I just felt rubbish.

I am 4 months into a trial "off" HRT and on the whole feel better and relieved as several
symptoms have disappeared. I still have some (original) symptoms but I plan to give it 6 months and then go to GP for an MOT and see if there is any other reason for these symptoms. For me it is a case of what can I live with rather than feeling pressured to be on it when it makes me feel worse.

I am not saying I will never go back on HRT but for me the HRT causes me more stress than being off it.

I think it is great that some women get a great result from HRT but a) not everyone does and b) many women live long healthy lives without it.

Whatever you do I hope you are able to manage your symptoms successfully.

[bombsh3ll]

Have you tried tibolone?

It is often overlooked as an option and can be really helpful for those who don't tolerate progestogens.

Additionally it has some androgenic properties too so can be an economical choice too, as well as being bleed free.

[SundayGirl]

Jane50 - the only way of knowing whether you'll have any issues without HRT is to try it and see.

I've tried several different HRT regimes and have come to the conclusion, much like DottyD68 that I feel much better without. My last oestrogen replacement was Lenzetto and I reduced and stopped over just a few days. No side effects of stopping at all. I keep a close eye on vitamin levels and take vitamin D, B complex, magnesium and probiotic daily. I also try to keep active and I still use vaginal oestrogen for GSM.

I've said this before on other threads but the thing with HRT is that you cannot guarantee that it will protect you from any possible future risks and you cannot guarantee that you will suffer from certain things if you don't use HRT.

You will find that there are several members here who are extremely pro-HRT and will encourage and persuade you to carry on and tell you the only way to feel better is to keep increasing your oestrogen amount.

Joziel - do you have any links to share that prove you will suffer from everything you mentioned if you don't use HRT?

[Jane50]

Thanks DottyD68, your experience sounds similar to mine. I've tried gels, patches, tablets, this dose and that dose till my head spins! I'm still getting flushes, night sweats, brain fog and insomnia and I feel dreadful on the progesterone phase so wondering how I'd feel with none of it. I also get regular, large breast cysts (which regularly end up infected) which are fed by the oestrogen plus my adenomyosis is also worsened with oestrogen. I completely agree - it's quality of life on a daily basis and I'm just interested to see where I'm at without any of it. Thank you for sharing your experience and I hope you find symptom relief too.

Bombsh3ll - thank you for the tibolone suggestion. I'd never heard of it but it certainly looks like an option I could try if I find I need to return to hrt.

[Shorty Pants]

I'm in the process of coming off hrt at the moment for the same kind of reasons you describe. I just feel like I want my body back. I'm 57.
I've had the mirena for around 15 years (think this is my 4th), but just couldn't cope with oestrogen. Again, I had weight gain, swollen boobs, sore glands and yes,
every time I cut the evorel oestrogen, my tummy swelled up, painfully, headaches, mood drop, tiredness, you name it.

My nurse said she thought this was probably my progesterone levels that were out of sync, rather than being due to the oestrogen. She said in her experience you're either one of the women hrt works for or you're not. I'm not.

I'm currently on week 5 of a 6 week wait to have my mirena removed, as it's now stuck in my cervix due to stenosis. I know not everyone has problems with it, but I'd definitely have a very frank discussion with someone regarding the situation with your adenomyosis. It's not been a fun wait to say the least! 😞

[Ayesha]

I completely agree with leading a healthy lifestyle. I've just purchased a treadmill and eat healthily with the aim of giving my body a fighting chance if I come off hrt. What supplements would you recommend? I drink Kefir to help my digestive system currently.
I just find I'm more comfortable down there if I take vagifem every day. Otherwise I get prickly and dry and also bladder issues. GP and pharmacist both fine with me using it daily as such small amount of oestrogen.

As you say we are all different but the supplements I take are VitD3, Zinc, B12, a probiotic and L-Choline, I wouldn't be without them. The zinc for example reversed my years of being pre-diabetic, that was such a surprise.

Glad to hear about your Vagifem experience, I find that too many medics still don’t know enough when it comes to dosages, I have had a few confrontations having to explain my daily use although just lately things have gone quiet on that front, long may it last.

[joziel]

SundayGirl, there is now endless research to uphold all I said. By the way, I DIDN'T say 'you *will* suffer from *all* these conditions, if you don't take HRT'. So please don't misquote me. I said that the risk of all those conditions will be greatly increased, without HRT. Which - it will. Just google or use ChatGPT if you want to find the research papers, I'm too busy to go looking them up and they are available to all.

[Mary G]

Personally, I wouldn't risk NOT taking HRT. 

I'm a very unusual case because I don't have a choice and if I didn't take it, I would be plagued with migraine auras for the rest of my life - it is a sub type of migraine caused by oestrogen deficiency, they get worse post menopause and oestrogen replacement is the only thing that works.

Through the years I have seen far two many women who think they have "sailed" through the menopause but then go on to develop numerous conditions which are caused by oestrogen deprivation.  It happened to my mother and my aunt.  The problem is, women experience health issues post menopause and don't realise they are oestrogen related.

It's important to bear in mind that the menopause comes into two phases, the immediate symptoms of temperature control, anxiety, insomnia etc and then post menopause, bone density disappears very quickly, some women experience cognitive decline, bladder issues (there is increasing evidence oestrogen protects against dementia) and frankly, the ageing process speeds up.  None of this is very palatable but there is no escaping it and all the vitamin pills/diet/exercise in the world are not going to ward off osteoporosis if you are susceptible. 

I take the view that oestrogen/testosterone replacement is similar to taking thyroid medication which people readily take  Apparently the two interact anyway.

For women who struggle to find the right type of HRT, this is usually because they are overdosing on progesterone, not getting enough oestrogen to cut through or they need to add additional medication like ADs into the mix.

It's always worth consulting a decent, private, menopause specialist if you can afford it.

[DottyD68]

The opposite in my experience. I know many ladies well into their 80's now who never took HRT and have lived perfectly healthy lives. My mum never had health issues and other than gradually going deaf and losing a lot of teeth (she had a bad abscess in her 40's after a trauma). Ok she got diagnosed with dementia at 85 but that's a pretty ripe old age imo and she is still going at 91. Similar for my MIL who is a healthy, sturdy 87 year old now as are a lot of their friends and relatives. All their male partners passed away in their 60's, 70's and 80's. The reality is that we are mortal beings, we age and something is going to get us. We weren't designed to live forever. So the threat of not being on HRT does not make me fearful. My intention is to live the healthiest life I can, exercise while I can, eat healthily and deal with the ageing process as nature intended rather than take HRT, feel rubbish for decades because I am at "risk" of developing mutiple health conditions if I don't.