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Author Topic: Anyone with M.E. and post-menopause?  (Read 525 times)

Postmeno3

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Anyone with M.E. and post-menopause?
« on: January 07, 2021, 03:28:43 PM »

Hi everyone,
I have M.E. and am post-menopause with quite severe VA. I have an Estring, but I feel it may not be low enough down to be fully effective. I have been using Estriol 0.01 cream externally every night, a tiny amount, but it seems to be overstimulatory to the urethra and nerve-endings down there as I now have extreme tenderness in my left nipple, a breast which has had surgery and the nerve endings suffered. Anything overstimulatory down below can trigger that nipple sensitivity. I know this might sound weird, but there must be links as we wouldn't get aroused from nipple stimulation, would we? It's just that there's an over stimulatory impact on me as the nerve endings seem supersensitive. Very hard to explain, but very distressing. I feel like the cream has over stimulated the urethra again as I'm back with those symptoms. Any suggestions, please? Try cutting back on the frequency of cream? All this is affecting my energy levels as the M.E  isn't tolerating it very well. Any help would be massively appreciated! Thanks!
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MummyClanger

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Re: Anyone with M.E. and post-menopause?
« Reply #1 on: January 09, 2021, 09:58:55 AM »

Hi yes I have M.E. Been ill for many years before peri/ menopause started. I’m 54 now been using HRT patches for about 4 years. I had horrendous menopause symptoms I felt so ill I thought it was a relapse with my M.E. And didn’t get help for a few years. I had to start on very low dose with patches Evorelle 25mcg and increase very slowly due to severe bloating. It would eventually settle down then flare up again once I increased the dose. I had problems with vaginal itching for many years and was treated eventually for vulval dermatitis with dermol cream (non steroid non hormone )but although this helped it wasn’t enough. I saw a specialist gynaecologist and she prescribed vagifem pessaries  which are oestrogen and very strong steroid cream Dermovate. This helped a lot but eventually because of other symptoms I had to start patches. I still use the Vagifem as a top up. One doctor told me the local oestrogen is sometimes not enough for some women. I would strongly recommend asking for a referral to a menopause clinic, as in my experience Most GPs don’t have a lot of experience with menopause. I don’t mean any disrespect here it’s just they are not specialists. I haven’t experienced the breast stimulation you mentioned but I did have a lot of breast pain as part of peri symptoms. The HRT patches have been a life saver for me and even though they cause me side effects such as bloating I wouldn’t stop them as just felt so unwell and emotionally low before starting them. Menopause is bad enough without M.E. As well! Good luck x
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Postmeno3

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Re: Anyone with M.E. and post-menopause?
« Reply #2 on: January 10, 2021, 01:52:09 PM »

Great advice and sorry you've had such a rough time. The interactions between menopause and M.E. can be very difficult indeed and getting things to balance out so that the impact of one on the other is minimal seems very complex indeed. You're right, GPs are not specialists and we can't expect them to have answers to the specifics of these complexities. Did your menopause clinic include how your M.E. might be affecting your menopause and pitch treatment to fit with that? It's quite a minefield, isn't it and I guess a fair bit of trial and error is required. I'm now quite clear that asking for a referral is what needs to happen and is the only way forward. Thanks so much again, always good to find a fellow M.E. warrior with such a unique, fluctuating and complex set of symptoms. I hope your road smooths out a bit for you now, but feel free to PM me any time. As you say, difficult enough dealing with one thing!
x
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Jasmine20

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Re: Anyone with M.E. and post-menopause?
« Reply #3 on: January 18, 2021, 01:05:58 PM »

I have had M.E. with varying severity since my 20s and I am now 52.
I thought I was coping pretty well with peri symptoms since the age of 46 and then - bam! - they all got very much worse during the first lockdown (no coincidence I'm sure as I think the stress just tipped me over the edge and I suffer from adrenal fatigue).

I found various supplements had helped deal with the hot flushes so I had assumed I would get away without HRT. It was vaginal atrophy that changed my mind as the irritation and burning became overwhelming last summer but I couldn't tolerate Vagifem or Ovestin. I had some acupuncture and started back on the Ovestin but using it externally on the vulva and perineum which reduced the symptoms but I still couldn't walk far without triggering a lot of discomfort.

However I ended up trying systemic bodyidentical HRT (Estrogel 2 pumps and cyclical Utrogestan vaginally) starting last October and that has really sorted out the VA for me. I now use Imvaggis suppositories with occasional doses of Ovestin internally which I can now tolerate better, albeit just a half dose. I still use the latter on the vulva too.

I'm not someone who has taken medications regularly so this is a departure for me. Do you think you could try the systemic HRT too?
« Last Edit: January 18, 2021, 01:07:36 PM by Jasmine20 »
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Postmeno3

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Re: Anyone with M.E. and post-menopause?
« Reply #4 on: January 18, 2021, 01:45:22 PM »

I am so pleased you got in touch. Thank you so much. It is rare and therefore extra helpful to find someone with marked adrenal fatigue (as an aspect of M.E.) which I'm feeling more and more influences the whole hormonal cascade quite seriously, the DHEA thing. This is why I was so interested in the Intrarosa. Were you prescribed these approaches which have proved successful by a menopause specialist? With such sensitive systems, I'm very reluctant to trigger anything from otherwise random approaches and, like you, prefer to avoid chemical intervention if I can. However, I feel systemic is the only option if, at 68, I can get it as spending a small fortune on acupuncture and herbal remedies has clearly not worked for me and why would it with these extreme complexities?! I think my best starting point now is to get my DHEA tested whilst I wait for a referral (if I get one, local clinic has now limited to complex cases where at least three approaches have failed) and I'm approaching the gp about that today. Of course, in the current climate, it needs far more than a telephone call with someone who is not the most receptive even face-to-face. Are you okay with PM'ing? Many, many thanks. Hard though all this is for us, you've made my day! 😀
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Jasmine20

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Re: Anyone with M.E. and post-menopause?
« Reply #5 on: January 19, 2021, 07:54:28 PM »

You're welcome to pm me. I'm a newbie to this forum but happy to share any info!
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Jasmine20

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Re: Anyone with M.E. and post-menopause?
« Reply #6 on: January 21, 2021, 11:47:12 AM »

Postmeno3 - I've received your pm but there's an error on my account which means I can't reply! No idea why but I thought you should know I've not ignored your message.
If you'd like to message me an email I could reply that way but I understand if you'd rather not.

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