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Menopause

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Original poster

Weaning off HRT

253 replies

RatatouilleAndFeta · 07/05/2023 13:06

Anyone want to do this together?

I've been on it for 1.5 years.
Have tried the spray, the patches, testogel, the vag oestrogen... I'm feeling anxious all the time and have put on weight. My boobs are like melons. I'm tired of thinking about it all the time!

Today I bought some fish oil. And I have the menopace tablets.
Going to try to swim every day and add in some yoga.

Majorly cutting down on carbs, sugar & alcohol.

Am a bit apprehensive about how much my joints ached pre-HRT, but
I feel like if I can lose the extra 3st I'm carrying, the joint aches might not require the HRT anyway.

Oh am going to stick with the vag cresm as it's very low and definitely has a positive effect.

Am weaning off, as I was on a 75 patch and had some 50's left over.

I'll post how it's going here every day.
Be lovely if anyone is thinking of quitting, and wants to join me?

😊

OP posts:
DixiePeach · 24/07/2023 14:36

Really interesting to read these posts. I started hrt last year and from day one my stomach has felt uncomfortable. I just was told to give them time. finally spoke to GP last week and she doesn’t think it’s anything to do with patches and is sending me for a scan to see what’s going on with my ovaries. I felt certain it was the patches causing it but now I’m worried about it. I’d be quite happy to ditch the patches I don’t think they’re all that for me. The only thing that’s improved is by my aching arms. I still don’t sleep. Apparently the gp said if I come off hrt I won’t be able to restart due to the increase in risk caused by stopping and starting. I feel stuck it’s horrible.

With patches my cycle seems random there’s no pattern to how I’ll feel one day to the next. At least with a natural cycle there was a predictable pattern. I’ve not had a bleed since April and had to go on holiday recently wondering if it was going to start. Has anyone else felt like this?

Runaround50 · 24/07/2023 14:46

@DixiePeach yes in the same boat.
Patches haven't really worked for me and I'm still not balanced or grounded in any way, shape or form.

I honestly do not know what do to.
Currently got a shit load of abdominal pain, so a scan is booked for this week. I feel nauseous, bloated and just grim. Beginning to wonder if I'm slowly dying!😢

DixiePeach · 24/07/2023 15:16

@Runaround50 oh I really feel for you it’s horrible isn’t it. Ever since starting the patches my stomach went like jelly. It’s like I’m covered in a layer of blubber and sometimes I’m out of control binge eating. Do you mind me asking what kind of pain you have? Is it low down to one side or what? Mines left sided bottom rib pain. Since I spoke to doctor my ovaries hurt. I think I, sending myself crazy with this.

DixiePeach · 24/07/2023 15:16

I hope the scan goes ok.

Runaround50 · 24/07/2023 15:20

@DixiePeach yes it's horrid. I have a left sided pain, sharp when I twist to the left, near hip i think. Then the abdominal pain, is rather like period pain.

All you can do, is wean off the patches and see how you feel. It's not an exact science, all this hrt lark and can take time to hit the right side with the right product.

When is your scan?

Runaround50 · 24/07/2023 15:21

Meant hit the right dose.

I seem to spend my waking hours, trying to fathom it all out! 🙈

DixiePeach · 24/07/2023 15:49

No date for my scan yet. I’ve got to have a blood test too but haven’t had the form yet either.

PaperBlinds · 24/07/2023 15:57

@DixiePeach so sorry you are worried, but hope scan is soon and goes well. Her if you need a handhold.

As I now understand it the irregularities in your cycle are (despite HRT) normal for menopause as ovulation slows down and stops? Lower dose is better for me now, on balance, and understanding HRT is not the only way and doesn't solve anything is a relief. Ageing and menopause though remain crappy.

GulfCoastBeachGirl · 24/07/2023 16:49

A non-hormonal medication that can help with hot flashes and insomnia is an old blood pressure medicine - clonidine. A lot of women get relief with a very tiny dose, sometimes as low as 1/2 the smallest tablet. It's also used off-label to alleviate anxiety symptoms.

All the usual disclaimers...results may vary, won't suit everyone, need a prescription. But a viable low risk option for women looking to avoid or reduce hormonal treatment. Could be worth a try!

PistachioGelato · 25/07/2023 08:17

PaperBlinds · 24/07/2023 08:43

@CappucinoAndCornetto

So I went private 2years ago with Newson clinic, started off okay, but felt I was getting increasingly generic advice and dose just upped and upped (didn't like second Dr I saw, the first one left after a year)

GP happy to prescribe any old thing she was asked for, (without an appointment) but went in to see her finally about exhaustion and worry about dosage/monitoring/ changes in bleed patterns, but she had read something in the Telegraph (!!!! - not the Lancet or the BMJ) that claimed dosage was dangerously high or something. Anyway, she got me a referral to a NHS Gyny clinic and that was useful appointment last week.

The best bit of information for me was understanding that as ovulation slows down/stops the bleed will become less regular/may disappear completely.

I (stupidly) thought it would make it consistent/disguised whatever was going on with meno stuff and I felt v confused as to where I was (still peri, now menopausal, still having periods, who knew?). So now I get it, bleed is now irregular, shorter and lighter which indicates change is happening. I was very very regular all my life, so despite horrible peri symptoms, I finally feel like it happening and this will sound mad, but I have been quite sad that this is it - no potential babies ever again! I don't want one (it would be a disaster for us and I am 50 this year), but I hadn't quite grasped it before.

Thanks PaperBlinds.

Thats's interesting... so the bleed changes even on HRT?

"The best bit of information for me was understanding that as ovulation slows down/stops the bleed will become less regular/may disappear completely."

I'm still off (its been a bout 3 weeks I think) really achy... sleeping badly... bit grumpy and my gums feel crap again... BUT i have stopped feeling massively bloated and my breasts are slightly less gigantic...,

Tempted to pop a patch back on because of the aches & pains & I really don't want a period on my holiday next week... , but I just can't decide.... 🙈🙈🙈

PistachioGelato · 25/07/2023 08:19

Also feeling less starving off the hrt.

Notellinganyone · 25/07/2023 08:25

SOMumm · 09/05/2023 21:29

I went cold turkey although it wasn’t by choice, FEMALE doctor I had never seen before decided I had been on patches long enough and refused my new prescription.
Awful
Jane Seymout on menopause, hrt, to successfully wean herself off patches, cut them in half.

She has absolutely no right to do this. You can insist. Research is now suggesting that there’s no medical reason to stop at all unless you want to.

PaperBlinds · 25/07/2023 08:40

@PistachioGelato yeah, I feel like i was told this, about the bleed eventually stopping, but didn't get it. It's hard to put it all together when there is so much going on and the brain fog doesn't help!

Just to say about stopping and starting - I was advised that if I stopped I couldn't start again - something about higher risks, so I would check that out if you are thinking about it.

Runaround50 · 25/07/2023 09:17

How's everyone doing?

I've still got my patches on, I simply can't face the relentless weeing without them. Then there's the low mood and anxiety to go rend with.

However, they are causing some issues elsewhere and my ultrasound pelvic scan is tomorrow. Terrified that I've got a womb full of fibroids and GP will abruptly stop all HRT!!

Really wish I'd never touched hormones now. 😞

Runaround50 · 25/07/2023 09:34

Forgot to mention the complete lack of motivation aswell. I'm off work for the summer now and was so looking forward to getting loads done. But the desire to get going is -1000!

How to navigate this god awful stage of life ?

PistachioGelato · 25/07/2023 20:02

PaperBlinds · 25/07/2023 08:40

@PistachioGelato yeah, I feel like i was told this, about the bleed eventually stopping, but didn't get it. It's hard to put it all together when there is so much going on and the brain fog doesn't help!

Just to say about stopping and starting - I was advised that if I stopped I couldn't start again - something about higher risks, so I would check that out if you are thinking about it.

Be interesting to know. I'll have a read too 👍

PistachioGelato · 25/07/2023 20:08

@Runaround50

https://harrowhealthcare.co.uk/stopping-hrt//*

Have you tried the vaginal oestrogen for the peeing?

PistachioGelato · 25/07/2023 20:20

PaperBlinds · 25/07/2023 08:40

@PistachioGelato yeah, I feel like i was told this, about the bleed eventually stopping, but didn't get it. It's hard to put it all together when there is so much going on and the brain fog doesn't help!

Just to say about stopping and starting - I was advised that if I stopped I couldn't start again - something about higher risks, so I would check that out if you are thinking about it.

Looks like you have to start low again if you stop.. so don't go straight back on to your 50's-70's, work up from 25 again.

menoinfo · 25/07/2023 20:36

Just thought I'd chip in with my experience... peri symptoms (brain fog/insomnia/low mood - nothing else) and went on HRT - immediately experienced severe discomfort down there, dry, sore and uncomfortable. Other symptoms much better. Doctor suggested upping dose (pump). Did that, no change. This went on for a year or so. I then went on holiday and forgot my HRT. All holiday I had complete relief from the downstairs problem (didn't swim or do anything that could alleviate the symptoms) it was unbelievable! I came home and changed my dose to 1 single pump and have never had the problem again (been a few months now).
Meno nurse said I probably needed the high dose to sort it out, and now it's sorted.. but I'm not convinced. I just wondered if anyone thinks HRT can actually be the cause of this kind of problem?

ssd · 25/07/2023 22:35

I take oxybutynin for the urge to pee, I'm not sure if it helps....i also use vagifem

Tried hrt, came off it

Pollyputhekettleon · 26/07/2023 14:37

PaperBlinds · 23/07/2023 16:52

@CappucinoAndCornetto consultant was pretty good and clear. But my GP is erm, a bit under informed, and had put me in a panic about 100 oestrogen being too much - according to consultant it isn't per se, it looks like it is for me.

So sticking with 50 and reducing progesterone to 100 (still doing sequential) and check again in 6 months. She thinks the return of joint aches needs separate investigations and has recommended i get a referral for that to RA clinic.

She listened, we got to the bottom of a few things - looks like my cycle is slowing down (hard to tell on sequential). But she very clear that HRT is not a magic bullet and needs adjustments and monitoring. She was also much clearer about risks etc.

Sorry TMI, put so good to talk to someone who is an expert. And appointment was cam and not hurried.

Can I ask if she offered any theory about why joint aches caused by RA would increase when someone lowers their estrogen dose? Do hormone levels affect RA symptoms?

PaperBlinds · 26/07/2023 16:26

@Pollyputhekettleon - no explanation, but firm that joint aches was not necessarily hormone/meno related.

Personally I am not so sure, the first symptom that went when I started HRT was the joint aches, which are now back with a vengeance. I think it's under-researched. But getting an assessment to see what is going on with joint pain seems like a good plan?

The endlessly ruling out each possibility is exhausting though.

Pollyputhekettleon · 26/07/2023 17:58

PaperBlinds · 26/07/2023 16:26

@Pollyputhekettleon - no explanation, but firm that joint aches was not necessarily hormone/meno related.

Personally I am not so sure, the first symptom that went when I started HRT was the joint aches, which are now back with a vengeance. I think it's under-researched. But getting an assessment to see what is going on with joint pain seems like a good plan?

The endlessly ruling out each possibility is exhausting though.

Very strange. I don't think anyone would ever claim that joint aches are necessarily caused by menopause. But when HRT resolves the joint aches, which then recur when you reduce the dose, she should at least be providing a logical theory for why the obvious answer is not correct. It would be different if your joint aches long predated other menopause symptoms maybe, or if there's some particular reason you'd be at high risk of RA, a family history maybe, or other autoimmune conditions. Doesn't sound like it though.

DixiePeach · 26/07/2023 18:07

@Runaround50 how did you get on today we’re they able to tell you anything or do you have to wait?

Runaround50 · 26/07/2023 18:09

DixiePeach · 26/07/2023 18:07

@Runaround50 how did you get on today we’re they able to tell you anything or do you have to wait?

I have to wait ( sigh!) until the results go back to the referring GP.

How are you?