Can anyone share their experiences of stopping HRT? I need to decide.

[Purplewithred]

How was it for you when you stopped post-menopause?

I am 63 and need to decide whether to carry on with HRT or to stop.

My main menopause symptoms were vaginal atrophy resulting in lots of UTIs, and a few hot flushes. I’m on a very small patch, overstan cream and my Mirena which needs to be changed.

I really really dont want to go back to endless UTIs.

Any advice or suggestions from anyone gratefully received!

Is there a specific reason why you want to stop?

According to research, if it's 'only' the vaginal and bladder stuff, then Ovestin may well be enough.

I am a bit older than you and still using HRT. I did try stopping for a few weeks a couple of years ago and I got hot flushes (at night) and insomnia within that time. My dr did say they might have settled if I'd stopped for a bit longer (his advice is a 3-month trial then reassess.)

I've carried on as I need it for my bones. I have a DEXA scan every couple of years monitoring things.

All I can say is you have to try stopping and see how you are, but at the same time weigh up why you are thinking of stopping. There are some women who are using it for life. Just for info, Dr Louise Newson's mum is on record (podcast on her website) saying she's staying on it forever- think she must be in her 80s or late 70s now.)

My own consultant has women in their 90s on it.

Thanks @JinglingHellsBells. The GP is doing due diligence I think - to make sure I have balanced the risks and benefits of staying on. My personal view is don't fix what ain't broke, but I may be forced into a change if they can't replace my Mirena (the last one was a struggle to get in).

I'll check out that podcast, thank you.

I was offered a Mirena right at the start of using HRT but I refused. The reason was years and years back I had the same progesterone in the Pill and it gave me acne.
I did mention the Mirena to my consultant not long ago and he said in older women (!) it can be harder to fit.
You might want to think about micronised progesterone which is flavour of the month now and also has a better safety profile than synthetic progestins like the Mirena.

HRT decreases the risk of dementia (the no one cause of death in women), osteoporosis, heart disease and cardiovascular issues and colon cancer.

Meanwhile the risk of breast cancer, when using body identical estrogen and micronised progesterone, is tiny and really it's questionable whether there is a risk at all or whether it is statistically significant.

Women can stay on HRT all their post-menopausal lives

It might be worth getting a DXA scan to see how your bones are doing as this is IMO an important part of your risk calculation.

I’ve decided to carry on (all the reasons above) and am also pushing for testosterone but know I’ll have to go private for that.

Help for HRT change
Hello all, I would like some advice or understanding regarding HRT. I am upset, angry and worried after receiving a phone call from my Doctor more or less forcing me to change my HRT. For background I am 60 years old. At the age of 32 I had a full hysterectomy. For the first year I was on HRT pellets that were inserted into my abdomen. I was then changed onto Premarin where I have been ever since. In the past few years the dose has been lowered to 0.625mg a day. Yesterday my Doctor phoned me and told me that I should come off of tablets. I said I did not want to. She then said that I need to lower my intake, I told her it had already been lowered. She went on to ask about cancers in my family, yes my Mum died of breast cancer she was 79. She said/insisted I go onto HRT gel. She said it had less risk than taking tablets. I do not know what gel I am going on and in trying to find anything out about it I am finding a lot of bad things like bloating, weight gain, pains, vertigo and anxiety etc etc. I am already on anti depressants for anxiety. Has anyone else had this happen to them? I am confused why all of a sudden after being on HRT for 28 years I am suddenly more likely to get cancer. Thank you for any help or advice in advance

@JoFable that sounds unsettling to have to change when you've had something that works for you for years. However, premarin is one of the older ways of delivering oestrogen and modern types are closer to the oestrogen your body produces naturally and more effective. Delivery mechanisms have also changed - you can now get oestrogen as tablets, gel, patches, creams or spray. Getting it through the skin reduces the risk of blood clots and is generally recommended. You may find this helpful balance-menopause.com/uploads/2021/09/Estrogen-in-Patches-Gels-or-Sprays.pdf

@UnaOfStormhold
Thank you very much for your kind words and link. As you can see by the time stamp I posted my message, I did not get much sleep last night. I read the information and it has helped me to understand better than the Doctor did. I suppose I am an old fogey who does not like change. (Still somehow managing to turn my mobile phone off with my ear if I don’t put it on loud speaker) I will at least give it a try and see how I get on. Will try to remember to post my results here in case the information helps anyone else as confused as I am.

What your doctor said is true, and if you can tolerate the change, it would probably be best for you. However, there are situations where sometimes women want to stay on older forms of HRT (or even to take HRT when advised not to, with a full understanding of the risks and benefits). This is what patient-guided practice is about.

You could try to Oestrogel or there is a spray, the Lenzetto spray, and see how you get on. And there are also patches which are body identical estrogen. But if you try these and they give you the side effects you are worried about, and you want to return to your Premarin then arguably you should be allowed to do that - with a full understanding of risks and benefits.

If you get to that point and your doctor won't let you go back to Premarin, then you could try finding a private HRT clinic who is prepared to prescribe to you. (Louise Newson's clinic does video consults and posts out the prescriptions, so it's all very convenient - it would be more expensive of course, as it's private.)

The thing I hate about healthcare is how, if you go private, you get what you are asking for and you are treated like a buying customer (with respect) and how often, if you go through the NHS, you feel like you are an object that has stuff done to it with no agency of its own. You shouldn't have to pay to be treated with respect and given a choice over your own healthcare. (Of course, we all do pay - ultimately with our taxes - for NHS care, but because that is so far removed from the point of service, it doesn't appear to factor into how we are treated.)

@JoFable

Help for HRT change Hello all, I would like some advice or understanding regarding HRT. I am upset, angry and worried after receiving a phone call from my Doctor more or less forcing me to change my HRT. For background I am 60 years old. At the age of 32 I had a full hysterectomy. For the first year I was on HRT pellets that were inserted into my abdomen. I was then changed onto Premarin where I have been ever since. In the past few years the dose has been lowered to 0.625mg a day. Yesterday my Doctor phoned me and told me that I should come off of tablets. I said I did not want to. She then said that I need to lower my intake, I told her it had already been lowered. She went on to ask about cancers in my family, yes my Mum died of breast cancer she was 79. She said/insisted I go onto HRT gel. She said it had less risk than taking tablets. I do not know what gel I am going on and in trying to find anything out about it I am finding a lot of bad things like bloating, weight gain, pains, vertigo and anxiety etc etc. I am already on anti depressants for anxiety. Has anyone else had this happen to them? I am confused why all of a sudden after being on HRT for 28 years I am suddenly more likely to get cancer. Thank you for any help or advice in advance

I feel a bit annoyed with your dr. Women like you on estrogen only hrt are not considered at risk from breast cancer. In fact all the stats show they have less BC than women not on any HRT.

The BC risks appear only to apply to women using combined hrt- estrogen and progesterone.

It's correct that at your age you ought to swap to transdermal as it reduces blood clot risks. There is no difference in risks of BC between the different types of estrogen so your dr isn't quite up to speed.

@everythingyouneedtoknow I'd say it is very unlikely that Dr Newson would prescribe Premarin. It's hardly used at all now and she is an advocate of body-identical estrogen. I'd say it was a waste of money approaching her.

Also, women aged 60+ are supposed to ditch tablets because of the higher risk of blood clots.

Hmm... she does say in her podcast that she has some women at her clinic still on oral estrogen. Don't know if that would be Premarin or another kind... She also talks about patient choice a lot and patient led decision making. But yes, the science does point towards older women not using oral estrogen.