Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: pastie supper on December 07, 2023, 10:22:09 AM
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I'm fed up with medicines and tablets, before my late 40s I was a fairly organic person with my eating and I took nothing from the doctor at all, just a few vitamins and minerals from the supermarket.
Then my periods stopped, followed by severe hot flushes, all age 51, so I asked for HRT.
Couple of years on and I take three pumps of oestrogel, 150mg clonidine, 900mg gabapentin and 75mg of venlafaxine. All four are supposed to stop hot flushes and night sweats and I also take a generic vagifem for bladder urgency with not much effect either.
Last night I got up three times to pee and change my sweat soaked nightie, three times before getting back into a wet bed and pushing my husband over so I could get a dry bit to lie on and somewhere dry to put my wet hair on as well in the hope of drying out a bit. I fall asleep easily enough, unlike in my 40s when I didn't really sleep the entire decade, so I'm getting my 8 hours as I spend 10 hours in bed and I'm not awake more than 2 hours of that.
However...I've bad pains in my muscles and joints after lying in a wet bed all night, I catch a draft as they used to say and it can take days for my neck to loosen. I've baclofen from the doctor for that symptom, strong painkillers too, and cyclizine to stop me being sick from all the tablets. My mouth and lips are dry and cracking, my tongue burns all the time now from drying out too much and my arthritis is worse today from lying in a wet bed the last few nights. I'm always thirsty but I try not to drink anything in the evening before bed.
On days when I take progesterone it's worse, I sweat more on those days and a few days afterwards, it seems to cancel out the oestrogen, as well as terrible emotional side effects from day 3-5 of taking progesterone, that last until 3-5 days after I stop. I bleed very heavily from the HRT and have recently been taking prescription iron as I've a history of anaemia.
My hair is getting chopped off today, no more woolly blanket on my neck and back, that might help.
Why do none of these medicines work for me? The doctors started me off on "mild" ones then added in more and more. It'll work sometimes and I stay dry for a week or two, then it comes back and I don't know why. While I'm glad the doctors are with me on this, I feel that maybe it's pointless and are all these medicines going to harm me long term?
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This might interest you, pastie supper:
https://www.theguardian.com/society/2023/may/20/drug-hot-flushes-transform-menopause-treatment-doctors-fezolinetant
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Just a note about not drinking in the evening - that might be making things worse. Unrelated to any meno issues! The body has the urge to expel toxins, that can make you need to wee as much as a full bladder can.... so by not drinking, your wee will be stronger, and you'll get a stronger urge. I know it sounds counterproductive, but try drinking more in the evening preferably just water, and stop about an hour/hour and a half before bed. That way the kidneys should be flushed and your bladder happily empty..... the only time I need to wee at night is if I have drunk way to close to bedtime, or if I've not drunk much.
Sorry I can't help with the other stuff, but I have had cystitis/bladder issues and been given Ovestin to use, and that has helped.
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I answered on your other thread :-\
U may be taking far too many products so your body doesn't know whether its flying a bike or riding a kite!
As suggested in my other response, you are on the cheaper version of va treatment so ask for 'vagifem'. Use every night until you feel comy regardless of what your GP tells you.
Drink all the while. The 1st pee of the morning may be dark, cloudy and smelly. After that urine flow should be straw coloured, any darker and U are no hydrated enough: lighter and we are drinking too much.
I also take 'nurofen' when symptoms irritate too much which relaxes the bladder spincter. I use 'ovestin' as necessary for my symptoms.
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I answered on your other thread :-\
My other thread has no replies at all so far!
Jenna, thank you, I read it and wrote the name down for the future if they ever get around to confirming it as an NHS medicine, or allowing it privately, then I'll be in that queue to try it!
CrazyD, I drink loads all day long. Herbal tea, so it's mostly just hot water and I'm quite addicted to it, the heat warms me, I love it. I always thought one of my problems was drinking too much water, my pee is never dark, always straw to clear, then after about 5pm I make sure I've only one cup to try to curb the night time peeing. I still wake up needing to go so urgently that I have to wait for the exact right moment to run, get all my muscles working first then get up and run. I take your point though, what I could do is take rehydration drinks during the day to make sure my hydration is as good as it can be, that might work.
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If your body is dehydrated then the kidneys will work harder 24/7 to clean the body of toxins. = getting up in the early hours.
1 doesn't need rehydration therapy if the overall diet is good: we take in fluids from everything we eat/drink.
Do read the 'irritated bladder issues' and any thread on vaginal atrophy. Lots of women suffer VA and sharing experiences can be helpful.
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I answered on your other thread :-\
My other thread has no replies at all so far!
If you get no replies it's worth bumping it. Sometimes the system seems to lose all the the 'unread posts'.
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I think that there was a comment in someone else's thread which I replied to?
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CrazyD, I drink loads all day long. Herbal tea, so it's mostly just hot water and I'm quite addicted to it, the heat warms me, I love it. I always thought one of my problems was drinking too much water, my pee is never dark, always straw to clear, then after about 5pm I make sure I've only one cup to try to curb the night time peeing. I still wake up needing to go so urgently that I have to wait for the exact right moment to run, get all my muscles working first then get up and run. I take your point though, what I could do is take rehydration drinks during the day to make sure my hydration is as good as it can be, that might work.
Ooo now you see I aim to drink at least 2 pints between 5pm and bed!!! I don't think the rehydration drinks are the answer though, if you are drinking ok during the day. Maybe worth a try for a few nights?? See how it goes?
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Ooo now you see I aim to drink at least 2 pints between 5pm and bed!!! I don't think the rehydration drinks are the answer though, if you are drinking ok during the day. Maybe worth a try for a few nights?? See how it goes?
I will try it, I'll give anything a try if it works for someone else then why not me as well?
I think two pints would be too much for me, that's over a litre, so about four mugs. OK, maybe I could! I'd drink that much before bed if I wasn't stopping myself, so perhaps my body is telling me the same as you are.
Hot water until 8.30pm, then go to bed an hour later, I've always the same bedtime, a habit from the decade of no sleep when "sleep hygiene" was paramount but didn't work.
It was perimenopause and I sleep well again now except for the sweats, I'm glad some symptoms of menopause disappear in time, it gives me hope that this will go back to being easier sometime soon.
I was pleased to get to menopause. I'd been looking forward to not having periods or iron deficiencies. Starting to sleep well again was an unexpected bonus.
HRT makes me bleed a lot so I'm not sure it's worth it when it's not even working all the time, but what if it's far worse without it all?
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This might interest you, pastie supper:
https://www.theguardian.com/society/2023/may/20/drug-hot-flushes-transform-menopause-treatment-doctors-fezolinetant
Well it is Christmas pastie supper ;D
https://www.bbc.co.uk/news/health-67747479
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Don't up your liquid intake unless your urine is very dark/smelly. We get fluids from our overall diet, both drinks and food intake. Too much liquid can be dangerous.
The urine during the day should be straw coloured.
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If you still have night sweats it would suggest you really don't have enough estrogen for YOU. (It's very individual.)
Have you had your estrogen levels tested on 3 pumps? You might need muuucchh more estrogen than that. My Newson dr says most women experience symptom relief between 400-600pmol and some women need as much as 1000. It should be symptom-led... and you still have symptoms there...
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As above, I think getting your levels checked is a good idea. It might be that you're not absorbing it. Hrt is usually pretty good at stopping flushes.
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How do you get levels checked? Is that with the Newson clinic?
I've not had any blood tests regarding menopause at all, sometimes they check my iron and it got into the normal range for the first time when I wasn't taking HRT, I didn't bleed for over a year before HRT. I've not had normal iron test in my whole life unless it was precisely at the end of treatment for low iron (including childhood anaemia).
I read the guidance for NHS GPs and it says that hormonal blood tests should only be carried out in 2 scenarios;
If the woman is under 45 and having menopausal symptoms
If the woman doesn't respond positively to any HRT, after all HRTs have been tried
I'm in my fifties and I'd say I'm responding, just not all the time. I've not tried the entire range, perhaps there were fewer products when the guidance was written, it sounds gruelling. I'm not their guinea pig and I hate having to try out so many really horrible medicines just because they don't know crap about it all.
I wrote the original post in a week when I was so wet with sweat every night it was just like when my periods first stopped before I was eligible for HRT. (I know loads of peri women get HRT off license, my GP doesn't do that, she sticks like glue to the rules).
This week I'm trying my best to get tibolone to replace the oestrogel and utrogestan. I ought to start utrogestan now, but I'm not prepared to be ill over the holidays, so I'll wait until January. It's not a mad risk to do that, it's fine, my endometrium is very well behaved, thin with not a polyp in sight when I got scanned recently.
Hopefully it won't come to that anyway. I phoned yesterday and today trying to get tibolone, but it's always the same. Out of my 52 calls they picked up four times this morning, hung up on three of those, the fourth time it was answered, after 15 minutes of redialling from the moment they opened.
I was told I was too late, all call slots are filled for today and getting a prescription isn't classed as urgent by the GPs so try again tomorrow.
I was told the same yesterday.
Did UK laws change regarding online pharmacies?
I had tibolone in my basket but didn't purchase it a few months ago, now it's not available anywhere.
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If your gp won't test your levels you can get it done privately. Medichecks does it, I'm sure there are others. If you use gel you need to be very careful the skin hasn't had any on as it can contaminate the sample. Can you book a normal appointment with the gp rather than a same day one?
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I wouldn't personally want to switch estrogen for tibolone. Tibolone isn't estrogen, so you're not going to get the many health benefits which estrogen offer - including improved bone density, cardiovascular improvements, reduced risk of dementia, better cognition etc etc.
Without a blood test you're flying in the dark. The NICE guidance states that blood tests should be used if you are contemplating going above licenced doses. At 3 pumps, you're not at max licenced dose yet - so it's correct that your first step would be to increase to 4 pumps of Oestrogel and - if that doesn't work with your symptoms - to get blood tests done to see if you're actually absorbing it.
You sound like quite a complex case so before trying random things or stopping it totally, it would really be worth having a consult with a specialist - privately if necessary. Newson are good, dependent on which doctor you see there. I see Dr Olivia Jones and she's good...
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What herbal teas are you drinking? I have to be quite careful, no liquorice, limited others.
Like, there's also an issue when someone burst drinks (lots at some points, little at others). Both stress the kidneys.
I don't know why it seems as if nothing is working for you.
Also, the gabapentin, that's a fair old whack, like the sort of dose I'd expect to see an active epileptic on, or someone with chronic pain. Excessive sweating is a known side effect. But don't stop taking it. A doctor needs to help ween you from that kind of dose.
Have you asked to see a pharmacologist? A doctor who specialises in prescribing and interactions. I think someone should examine your regime and maybe help you to rationalize / prioritise.
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I don't know how long it takes for the oestrogel to get out of my system, so I don't know if it's the combined effect of both tibolone and oestrogel making me feel great, but I'll take it, lol.
Started tibolone less than a week ago and today I woke up dancing, literally, while I waited for the kettle to boil (always my first port of call in a day).
I didn't know how to switch, the trial tibolone came without instructions, so I goggled it and found various instructions. I decided it was best to go 3 then 2 then 1 pump on consecutive days and start taking tibolone at the same time. Now I'll go ahead with tibolone alone.
It's a relief not to feel that weird oestrogel feeling, about 48 hours since last use, it makes me passively agreeable to any old crap, it immerses me in "go with the flow" whereas tibolone takes me to a stable footing where I can watch "the flow" flow past me!
I feel better now, I'm sticking with tibolone and I'm going to forget about all HRT apart from it and the pessaries for VA.
In the days since starting tibolone I've not had the urge incontinence that plagued me on oestrogel, I'm feeling hopeful for the future again.