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Author Topic: Help me decide  (Read 941 times)

CrispyChick

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Help me decide
« on: June 21, 2024, 10:19:39 AM »

Ladies.

I've been on this forum for some time now. I've had many trials over the last 6 years since my peri triggered horrific symptoms.

But I'm now in pure hell. Still very much peri.

Horrific symptoms ever day - poisoned, deathly vile feeling, dizzy, lightheaded, full sore ears, nausea, gagging sick, stomach distress and at times extreme brain fog, doomy mood and aggitation. I have had absolutely no appetite for the last 3 months. I've now lost 1 1/2 stone.

My Estrogen is always at a decent level on bloods. Always!

Whilst previously the mini pill then combined pill helped a bit - after my bhrt trials, I've tried pills again recently and the results were horrific.

It's the fluctuations and estrogen spikes that are killing me. So hrt simply compounds my problem.

I'm so so sick and poorly with it now. I'm no longer functioning. I'm stopping work. I feel like I'm failing as a mother and wife. I have nothing to give.

I have been offered chemical menopause injections. But the gynae was quite to the point that she thought I would just swap for different symptoms - pointing out that many in meno get anxiety, depression and vertigo!! Along with the usual flushes etc.

So she has put me off.  >:(

But I cannot continue feeling this ill and not functioning.

Please could I have some support and advice. Especially from those that have tried to help me along the way.  :-* xxx

And id love to hear from anyone in chemical meno.
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Penguin

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Re: Help me decide
« Reply #1 on: June 21, 2024, 10:29:32 AM »

CC as you know I have no direct experience but we have similar issues re estrogen spikes and how they make us feel. Coming off hrt has been the best decision for me, 2.5 months in and not regretting it! Given the chemical meno is reversible, I don't think you have anything to lose by giving it a try for a few months and then reviewing. I briefly had my estrogen down regulated by nasal spray when I did ivf in my mid 30s. It was only for 2 weeks but I didn't experience anything negative except feeling hot. I realise 2 weeks is nothing and it may well be a different drug they use for chemical meno but at this point in time, if it was me I'd give it a go.

Plus everyone experiences meno symptoms differently as we see on here, so just because you've told these different symptoms can happen, there's no guarantees that they will!

Can you pinpoint what you're scared of re trying it?
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CLKD

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Re: Help me decide
« Reply #2 on: June 21, 2024, 10:32:00 AM »

MayB you need to have an appt with a dedicated menopause specialist rather than a gynaecologist? 

Remind us: R U using any form of HRT ?

How did U feel during your menstruating years?  R current symptoms cyclical?   :foryou:
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CrispyChick

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Re: Help me decide
« Reply #3 on: June 21, 2024, 10:36:29 AM »

Thanks

I'm most scared of my mood crashing - as I that's the one thing that's okish at the moment.

I'm also very very scared of vertigo.  :( as I do get it sometimes.

I'm scared of being even more housebound and failing my two lovely kids.  >:(

The gynae I saw specialises in meno clkd. No I dont take hrt as the estrogen simply makes me worse.

Penguin - are u managing better now on nothing??? How are your symptoms? X
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Penguin

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Re: Help me decide
« Reply #4 on: June 21, 2024, 11:15:55 AM »

In fine actually thank you. Estrogen on my Dutch test came back really high on hrt and I was getting sore breasts from mid cycle plus moods stuff and rubbish sleep. Last two months I've only had pmt for 2 days before period and a couple of days after it wtarts so much better. Bit of increased anxiety during period but manageable. For the most part of the month I feel better than I ever did on hrt. Getting a bit dry down below at times but I've just today started with yes vm, may end up using topical estrogen if necessary.
Didn't realise that both the citalopram I was on (and the fluoxetine I've switched to) increases allopregnalalone which in turn increases DHEA which increases estrogen so that is probably also adding to the levels! Are you on an AD, I can't remember, but if so then worth considering that too, I had no idea!
Still on DIM and sulforaphane which I think is probably working better now I'm not adding in extra estrogen. Feel free to pm me again if you want to chat further x
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Mariab

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Re: Help me decide
« Reply #5 on: June 21, 2024, 12:38:19 PM »

 Hi
Is that really true about citalopram!?
I am also one  that and have really bad bouts of anxiety etc.. every mid month....definitely food for thought  :o :)
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CLKD

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Re: Help me decide
« Reply #6 on: June 21, 2024, 01:40:12 PM »

Mariab - how R u the rest of the month?  How long have U been on citalopram?  I have used different ADs since 1988 and have never noticed an impact on hormone levels.  Although I don't suffer from flushing etc. ..........

Anxiety can be treated with appropriate medication - a few ADs may help but dedicated treatments are more likely to ease symptoms.  I found 'Bachs' rescue remedy of use as well as Propranolol every night.  They eased the sudden early morning cortisol spikes. 
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Mariab

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Re: Help me decide
« Reply #7 on: June 21, 2024, 10:16:19 PM »

Hi
The rest if the month symptoms ease and I have a few days to a week of feeling better but not completely at ease then it goes round again..I've been on citalopram since last September I found  its made things abit better as I was rock bottom for the first time in my life...I definitely get spikes in the mornings and I can feel awful all day....unfortunately I'm on pregabalin which  ant be taken I believe with propranolol..I wish I had taken that instead but gp insisted it wouldn't work but have found now the pregabalin is hard to wean off so I'm stuck at the moment  :-\
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CrispyChick

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Re: Help me decide
« Reply #8 on: June 22, 2024, 10:06:48 AM »

Thanks penguin.

Can anyone else help me decide??? I feel so so ill at the moment. No appetite. Losing an incredible amount of weight. Feel vile every single day.

As navy of you will know from previous posts - this is my peri estrogen spikes. Hrt makes me worse. As, like penguin, it's adding more estrogen.

But I'm scared stiff of chem shut down.  >:(
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Mary G

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Re: Help me decide
« Reply #9 on: June 22, 2024, 11:32:48 AM »

Crispy, I'm so sorry to hear that you are still struggling with oestrogen dominance. 

Firstly, have you looked into aromatase inhibitors that stunt oestrogen production, the three main types being anastrozole, exemestane and letrozole?   I'm assuming the gynaecologist is suggesting (GnRHa) chemical shutdown?

Does the gynaecologist (NHS?) specialise in oestrogen dominance and/or menopause related problems?  I don't know much about oestrogen dominance but you need to stop the spikes and force your oestrogen into permanent flatline.  I know you have tried progesterone but have you tried a very strong type at a very high dose?

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CrispyChick

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Re: Help me decide
« Reply #10 on: June 22, 2024, 11:50:09 AM »

Thanks so much for reaching out Mary.

I know of aromatise inhibitors. But noone has mentioned them. I have a note to ask about them, because they do seem a little less drastic.

My thoughts are they are probably only licenced for after breast cancer. Licencing plays a big part!

No. The gynae does not believe in ED. But she does specialise in meno and cycle issues.  I'm not sure any of them do consider ED over here. But, as you'll know, I've also been through the Marion Gluck clinic. Who defo said I was ED.

I definitely think progesterone could fix this for me. But I've messed so much (and been badly managed I think) that my body will now not accept any natural P. Not even a tiny dot. I now get excruciating stomach pain. I've kept trying. But it just won't accept. The higher I go, the worse it gets.

That said, I did talk the gynae into cyclogest, so I will have one last attempt next month.

I've tried utro before. And that's what triggered the stomach issue. As well as comotosing me.

If it wasn't for my stomach, I think I'd have cracked this with prog. But now my only choice is to ride it out. Or chem meno. 😢
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bombsh3ll

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Re: Help me decide
« Reply #11 on: June 22, 2024, 12:01:59 PM »

Crispy, I am not convinced that all this can be chalked up to perimenopause.

The substantial weight loss is concerning, particularly if this has occurred over a relatively short period.

I think you certainly don't have anything to lose by a trial of gnrh analogue treatment to completely shut your own ovarian function down.

You don't even have to suffer the effects of menopause with that - you could add back a stable low dose of estradiol and progesterone, the difference being it wouldn't be swinging up and down chaotically.

I would however ask for a more comprehensive workup from your GP if this doesn't help. In particular they need to document the weight loss.

Aromatase inhibitors are only suitable for postmenopausal women - they don't shut down your own ovarian estrogen production, they just block its formation in adipose and other tissues from precursor hormones.
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CrispyChick

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Re: Help me decide
« Reply #12 on: June 22, 2024, 01:16:12 PM »

Thanks bombshell

I hear you. But I'm not worried, because this is how it all started 6 1/2 years ago. Felt like this with severe loss of appetite and lost lots of weight. Had loads of tests then. Nothing wrong. Finally proved it was hormonal as it all calmed on the mini pill.

Fast forward 6 years ago it's the same symptoms. But now the mini pill no longer helps as it no longer takes my estrogen down. I know because I've been testing.

So I'm not worried about how I feel. I have no health anxiety over it. Which is something.

But I think you're prob right - it's not so much peri, more a hormonal imbalance.

Ah ok. Thank you for the explanation on aromatise inhibitors. Gosh, those post meno woman must have to live with absolutely no E.

I think that's a concern for me. The chem meno will take all E down.  But I doubt I'll survive with no E. Add back hrt is a definite option - but as I can't tolerate natural progesterone, I'll prob just go back to the same state of estrogen dominance. That's my fear.

X

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bombsh3ll

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Re: Help me decide
« Reply #13 on: June 22, 2024, 01:55:46 PM »

When you were on the mini pill, was it desogestrel and did you tolerate it?

I also require menstrual suppression and when I lost access to my combined pill during the pandemic I tried desogestrel (brand name cerazette/cerelle).

One desogestrel pill daily didn't shut me down either - I continued to have completely regular periods, but 2x75mcg ie two desogestrel pills a day did.

This wasn't for me because I didn't wish to live with very low estrogen - both my parents have osteoporosis, and as soon as I could get the combined pill again I switched back, however some women do use this long term eg for endometriosis.

150mcg desogestrel can also be used off label as the progestin in HRT.

Just something else to think about that you might tolerate if you have tolerated desogestrel before, even if the 75mcg dose didn't help.
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Penguin

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Re: Help me decide
« Reply #14 on: June 22, 2024, 02:04:26 PM »

CC are you still in the ED group? If so look up a recent post by Michelle Bowers who mentions arimistane, an estrogen blocker.  You'll have to do your own research re safety, effectiveness etc as I've only just heard about it today and it isn't something I've looked in to, but thought I'd mention it on the back of Mary's post re aromatose inhibitors.

Also re those medications, like the poster above, I thought they were only indicated for certain cancer patients, in that they prevent the estrogen in breast tissue but then potentially increase it (or don't prevent it) elsewhere. Which means it may not work or may not be safe. No idea re this at all, just that I'd heard that was the risk of those AIs.
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