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[Madge79]

Hi everyone
 
I’m at breaking point and not sure what to do so would really appreciate any advice please!

18 months ago was diagnosed with long covid, had been peri for a few years and on HRT and getting reasonable Estradiol levels (400-500 p/mol) when bloods checked. Once the long covid diagnosis occurred I noticed Estradiol readings plummeted even when on HRT. I wondered if there was an issue with the gel at this point (green square/orange square thing kicked off at this time) so I tried patches (evorel and Estradot) which I didn’t absorb and felt awful, then lenzetto which again I didn’t absorb then finally sandrena which made me feel horrendous. My levels on sandrena dropped to 59 p/mol!!! So decided to return to estrogel and been back on that for 6 months now.

Still feel horrendous with terrible joint pain, burning muscle pain, migraines, tinnitus, fatigue etc. had my bloods done again a few days ago and my Estradiol is only 79 p/mol this is on 3 pumps of estrogel!!!

I’m just at a total loss as what to do!!! I’m assuming the low levels for the last 18 months are probably that I’m postmenopaise now (been peri for 10 years). I’m also questioning whether I have long covid at all or whether it’s all the lack of estrogen.

I can’t take oral HRT due to aura migraine. Do I come off HRT altogether as it seems to be pointless, increase to the max my dr will allow (4 pumps) which I can’t see as solving my problems as I clearly don’t absorb it or push for a referral to a specialist (no specialists in the whole of the county my GP tells me).

I’m only 44 so really I should be on HRT a while yet! My GP keeps saying “at your age you will be peri so will produce peaks of your own estrogen” with constant readings of very low Estradiol in the last year (180, then 140, then 59 and now 79) and an FSH of over 40 each time even on HRT I keep trying to tell her I’m post meno not peri but she won’t accept it! My mum was post meno at 42, I had a transvaginal ultrasound 2 weeks ago and she said she couldn’t find my ovaries at all they were so small!!

I’m just out of ideas and feel so awful; I can’t deal with the fact that i might feel like this forever. I’m so fed up! I don’t feel heard by my GP she just told me that perhaps I have to accept this new normal and as long as I’m functional that’s all I could ask for. I’m only functional as I’m one tough cookie, I’m pretty sure this would have broken most people. I am a shadow of my former self and I barely recognise myself. I have a 6 year old child (peri baby) to look after and a challenging career and I’m so drained.

Any advice or similar experiences please? 😢

[discogirl]

Hi Madge79

I'm so sorry you've had such an awful journey.

I'm by no means experienced in these things, but my thinking is that maybe long covid has been the reason regarding your estrogen levels. I found this online:-

"Doctors also think it's possible that long COVID worsens the symptoms of perimenopause and menopause. Lower levels of estrogen and testosterone appear to be the reason" That was from the menopause guide of WebMD Health News. And I have heard that covid can mess with your estrogen levels.

I understand that you can't see the point in continuing with hrt, but for me if low estrogen levels are the problem then stopping the hrt wouldn't be the answer, apart from maybe a couple of weeks to try and reset your body sort of thing.

This link is from the balance menopause site and it's a fact sheet regarding long covid and what it can do to womens' hormones :-  file:///C:/Users/Laptop/Desktop/Long-COVID-and-female-hormones-factsheet.pdf

If you maybe try and copy and paste the link.

For me, I think the issues was/is the long covid and probably this has been affecting your hormones and probably the way you have been absorbing estrogen.

I wonder, this may not be the answer but if stopping everything for a couple of weeks, see where you're at, then restarting the hrt again. Maybe introduce the estrogen for a couple of weeks, then the progesterone. This may not be the answer but hopefully more experienced ladies will be along with more help.

I truly hope you get sorted, take care xxx

[Kathleen]

Hello Madge79

I am sorry to hear that you are suffering.

Your GP certainly isn't helping you so perhaps consider a private clinic or specialist if you can afford it. You can also email Dr Currie and ask her advice, emails cost about £38 I believe and details are on this site.

I wonder if an implant would work for you instead of transdermal products? It is very likely that you are post meno as your mother had an early menopause.

If you have a diagnosis of long COVID  you may be referred to a COVID clinic and they are likely to have seen other women with the same problems.

The above are just some suggestions and I am sorry that I can't be more helpful.

I hope you manage to get the treatment you need and please keep us updated.

Wishing you well and take care.

K.

[meno-mel]

I'm sorry your GP is being stubborn about the age you are allowed to have menopause at!
Of course you could be similar to your mum and ten years peri ought to be another clue, but GPs don't have the time to think these days so we end up getting our info here instead.

I just wanted to say I believe my periods stopped due to covid and they didn't start again until over a year later. My family tend to have late babies and late menopause, so I was pleased to be the exception, age 51 when my periods stopped.

After 14 or 15 months of no periods and having hot flashes, I got Evorel Conti which was awful and not worth it so I stopped after a few weeks, but that seemed to reboot my system. My periods started again. In the year and a half since then I've not had more than five weeks between my periods, they are in 3-5 week cycles as they were before covid, longer cycles in winter then shorter in spring, 4 weeks in summer and autumn, same as they were forever before that.

If you aren't absorbing oestrogen well, then why isn't your GP trying you on a higher dose?

It's good your GP does blood tests, most refuse, so at least you know why it's not working. If I were you, I'd try four pumps for a couple of months, fill myself full of extra vitamins just incase that helped absorption and see what happens.

How about warming your skin under hot water to open the pores, then dry and quickly apply the gel? Or use a hairdryer to warm the skin then apply? Your skin can't be that much more impenetrable than anyone else's, but you need to know why it's not getting to your bloodstream. Can it be used vaginally?

I'm nearly 54 now and was told three months ago I'm probably still ovulating. The variation between women is huge. I imagine your GP would tell me I'm post meno with post meno bleeding every month to panic about.

[joziel]

Oh my goodness Madge, if you can possibly afford it, do make an appointment with Newson Health (online) - they will post you all the estrogen you need. It is private but very worth it and they wiill write to your GP and tell them what to continue prescribing.

You should be treated according to what you are actually absorbing, not what you are putting on your skin. You might need a combo of patches and gel to get to an acceptable level.

You can also ask for a referral to an NHS menopause clinic but there will be a long wait for that.

[Hurdity]

Hi Madge

So sorry to hear about your problems. Yes it is right that docs do not normally meausre estradiol levels as they vary so much and should go by symptoms - but as you say if your levels are now consistently low, AND you have ongoing symptoms, then this could point to low oestrogen.

Yes as meno-mel says age at menopause tends to run in families, other things being equal. Although you cannot determine someone's menopausal status from estorgen and FSH tests alone, the fact that as well as low oestrogen levels, your ovaries were difficult to find - does suggest you may no longer be peri.

Even if you are post-menopausal, this does not explain such a low estradiol level on 3 pumps of oestrogen and looks like you really are not absorbing it though this method. Have these low levels of oestrogen been obtained using all the different methds of getting oestrogen? ie patches, Lenzetto and gel? As you say you are too young to have low oestrogen.

In terms of what to do, I agree with Kathleen - an e-mail consultation with Dr Currie may be the way to go in the first instance.

Re different methods - also perhpas think about trying one of the other methods again eg patches, rather than having the prospect of having to spread large amounts of gel over larger areas of your body, or Lenzetto again? Hsve you tried with different parts of your body? Do you have hot flushes and sweats?

Also how have the blood tests been done - through NHS, blood draw into a tube?

Hope you manage to find a regime that helps you get the oestrogen your body needs and to improve your quality of life...

Hurdity x

[Madge79]

Hey everyone! Some excellent advice here thanks!! Will go and process it all that’s for sure!

Hurdity I have triend patches, lenzetto and sandrena all of which I didn’t absorb. Estrogel is the best of the bad bunch but still clearly not working!!

I usually do morning pumps on my outer arms and nighttime pump inner thigh. Are any other places used do you know? I get occasional flushes but mainly I get awful joint pain and burning muscles, fatigue, anxiety and migraines. I was wondering why I felt even more horrific on utrogestan than usual and I expect it’s because that is so dominant against hardly any estrogen!

The blood tests have been a mix of NHS (they did them as I was on an off licence high dose of lenzetto and sandrena and they wanted to check my levels weren’t too high ironically) and medichecks. Although when I use medichecks I don’t do the finger prick as find it very unreliable I choose to do a vein draw into a tube and my local NHS hospital does that and sends it off to their lab.

I think an email to Dr Currie is a good idea! Thanks so much!