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[RebJT]

Morning Kitty

Thanks, I was just coming to post and found you'd replied.  I am really struggling (which is frustrating as I was really struggling before!)

I had been pottering along OK on 3 pumps of gel and sequential prog finally - it took a while (pre covid) to tolerate any prog at all, so we initially started one day on, one off, for a many doses as I could manage (started with 5, on v low dose E, and worked up) but over time I managed to get to a standard sequi regime.  As you know the issue then was feeling FAB on E, and crappy on P (it had a weird stimulatory effect, made me jittery, puffy, and over stimulated, this seems to have resolved in time)

Just pre covid I started getting low E symptoms (soreness, dryness, sore shoulders, crushing drops into just unbelievable fatigue).  Went on vagifem.  Then I got covid, which kicked off the symptoms in the early half of the cycle which - I posit - was too much E relative to P, wired, jittery, histaminey, sleepless, and just like a live wire with no insulation.  Also I was getting MASSIVE dips of fatigue, hair loss etc.  Went for bloods thinking it was my iron and also tested E about 2 hours after applying the gel.  Iron was fine and E came back at 290.  In the dark days of histamine havoc pre diagnosis my E was consistently over 1,000 (1,200, 1,600, 1,800 etc)

So, I made the logical deduction I thought, that I needed more E, went up to 4 pumps.  This did help with fatigue, mental clarity, work productivity etc, but in hindsight (thank God I keep a daily spreadsheet, and have done for over 800 days now) the week 2 jitters got worse.  At the same time my ability to tolerate P in the second half of my cycle massively improved, I could easily take 200mg a day sequential and this resolved things, second half of my cycle was a blessed relief as you know.  However, week 2 jitters was worse, and this E increase coiniced with the short cycles - 21 days, 23 days, 24 days, and very heavy.

So I dropped back to 3 pumps, but the crushing fatigue was back, pain in shoulders, arms, toes, fingers ... I'm currently on 3.5 ... but not seen the gynae for a review for a year, we do email, but she's super busy so I'm guessing just having a quick look at my notes.  And I haven't had a consult with her re covid yet (next month) and she is expert at HIT and LC.

Sorry for long preamble, very foggy and tired today...

My question.  I did one long cycle progesterone (21 days as per BMS guidelines up thread) starting prog on day 5 - 26, felt great, dodged the week 2 miserty, period came bang on day 28.  Thought I'd cracked it.

I've done the same this cycle and bled on day 17, we're now day 24 and still in pain, spotting, distended, scraping feeling in womb, I feel like I'm vibrating inside and outside, and actually have a tremor in my hands.   And more to the point unbelievably WIRED, jittery, tearful moody, sleepless, can't work, can't think, biting people's heads off, nervous and generally feel like I've had too much coffee.  Wired and tired.

In short, I've had those hideous symptoms I get in week 2 (which whilst hideous, only lasted a week) continuously now since bleeding on day 17 and it's been a bit more pronounced since adding lots more prog to the mix.  This is what happened to me when I've tried the pill (pre covid), had one good month, and then the jittery buzziness was continous and had to stop.

Reached out to the lady I'm having a review with next week to tide me over til I see the gynae (new practitioner, more for a bit of HRT education as I've realised I'm a bit confused about stuff) who has suggested stick to vaginal for now.  Yesterday was just awful, had to email clients as I'm so behind on work.  Weeping, etc.

It had finally settled by bedtime, inserted the 100mg vaginally, and the over stimulated feeling immediately started.  Not as bad granted and have slept.  But I am not myself at all.

I am wondering (and I am very tired so I'm hoping someone can help) whether a) I'm on too much E for my histaminey long covid self to handle and b) whether this feeling revved up thing will settle, or whether Im just one of the unlucky ones who gets wired on conti P.  I confess that even though the post covid symptoms early in my cycle were nigh on intolerable, they were more tolerable than this, and at least I had two and half weeks of feeling normal.

I am going to try and grit my teeth til my apt on Thursday, but unsure I can tough this out long term unless it settles.  Wondering if a lower dose E would help, and also whether (subject to bleeding) whether I could get away with 100mg every other day.  No idea.

This is why I've always resisted the coil, as at least with tabs I have some control over when the misery ends.  I also don't understand why P would turn my symptoms off like a light switch on sequi (and it really does) and rev them up on continous?

Sorry for the essay, trying to be clear and understandable in my exhausted (but not at rest!) state.

Cheers

Reb
x

[kittywells]

Reb, I'm so sorry things are this bad for you. I don't have anything specific to offer except my own experience so far, as I understand too little about how all of these hormones interact and the reasons why different individuals respond the way they do. My approach has simply been to find someone who does understand and put myself into their hands! My ongoing cognitive, nervous system, and fatigue problems from the long covid have made this neccesary for me.

Normally I'm the kind of person who dives in to research and understand everything, but this is so hard when your brain isn't working properly and operating a computer is challenging. I've also found that being in this position of researching online and feeling a scarcity mindset when it comes to trustable information (sadly the case with both LC and meno/peri) and a lack of control around my health outcomes is really activating for my nervous system. Which is terrible for my LC symptoms and general recovery.

So, as a last thought, I wonder what else you are doing to treat your LC problems? I am wondering if some of your symptoms that you attribute to hormonal fluctuations could potentially be caused by nervous system dysfunction and other systems of the body being affected by long covid? It sounds as though you are really paying very close attention to the timing of symptoms with changes to your hormonal input, but these experiences in your body could have other sources. It may be that you've already ruled this out, of course. But I'd say talking to a doctor who understands both LC and perimenopause and the massively complicated way these two conditions interact is really the key. I am sending you positive energy and hope things improve for you soon. It sounds as though you are doing everything you can to take care of yourself.  Kx

[RebJT]

Hiya

Yes I work with a somatic practitioner for nervous system stuff have done for three years (cPTSD, a lot of it medical, long story, histamine is also part of fight or flight).  It's so frustrating as I was better, took a loooong time, but I'd truly finally found a place where I was well ... and then, covid.  My histamine issues come from three bouts of flu in the early noughties, we've figured out in hindsight, but the over activated nervous system and lifelong hormonal issues probably meant I was dry kindling ... But to have lost it all again is just bloody heartbreaking.

I am speaking to Dr Peers next month, not had a review since covid (she's about a year lead in on Apts now, because she's so busy with LC cases on top) so depending on how much support she's able to give me, I might speak to your doctor as I need more hand holding than I'm getting right now.  We will see.  TP is lovely, truly lovely, and I need  prescriber for all the mast cell stuff and she's super supportive and knowledgeable, just not very accessible currently.

Weirdly I'm more buzzy today after 100mg vaginally than I was yesterday after 200 orally (I wasn't jittery yesterday but was so tired, weepy, blue and just not functioning or able to think) so I totally agree that trying to puzzle this out on my own, online isn't the way to go, learned that the hard way, but I think leaping to the 'conti prog makes me jittery' isn't perhaps the cut and dried case my exhausted self thinks it is!  It's just on days like today, I just want to STOP this madness - at least I wasn't a jibbering wreck of these proportions on sequi.  But then I'd have to start again.  Will see what tomorrow brings, I might well cut my losses and regroup, I look properly ILL today, I really do.

Reb
x

[RebJT]

Brief update to say I'm remarkably better this afternoon.

I've decided I can't possibly figure this out on my own, even the HRT I'm groping in the dark and panicking and making changes sometimes too quickly or not consistently so I really, really, really need to slow down and just go at this very carefully and find some proper hand holding with someone that I can get hold of and check in with when I need to.  Hoping this lady next week knows her onions.

Will keep checking in,

x

[RebJT]

Just a quick update.

Conti was a spectacular failure, jitters got worse and worse, had a massive histamine overload spike (not had one of those for at least a year, if not longer) and had to stop.

Now seen a meno specialist (on HRT dosing, not my histamine specialist gyane who I see next month, after a year's wait between apts as she's so busy) who suggested regrouping on two pumps and higher dose P sequi - start from the beginning again.  That was an unmitigated disaster also as whilst the histamine came down, I landed in low E crashing fatigue!  Gritted my teeth for ten days but now back on three pumps (feeling vaguely human) and waiting to try 200mg utro sequentially for 14 days - I can tolerate 200mg, but not done the full 14 days at this dose yet, even so this is huge progress as when I first was diagnosed with HIT in 2019 and tried HRT the best i could manage per cycle was 4 x 100 utro, and even that revved me to the moon and back.

Happy to report that I'm just into week 2 of my cycle and the post covid jitters have not arrived, which I think must be slightly less E on board (although both me and the doc think I need four pumps, can't tolerate it yet as can't seem to get enough P to blance it out).  So I'm hoping if i can handle the full dose P sequentially, that might help my cycles, we will see.  I'm also going to test my E very month on the same day of my cycle (£50 at Nuffield) and just see if I can glean anything.

In short, despite needing conti, I can't handle it, as unlike when I take it sequi, it has a whopping, paradoxical stimulatory and histamine aggravating effect when taken every day - specialist said I'm betwixt and between - properly in peri but not far enough in to handle conti, so it's like 'trying to put a lid on a boiling pot'.  My body wants and likes having a rhythm.

I'll report back when I've seen the gynae - Dr Peers, she's lovely - as I'm hoping she might be able to shed some light on the covid element, but my frustation with all meno care is 'well, you could try ....' - trial and error for me is total catastrophe and a month off work, it's getting seriously OLD now, so tired of it!

Hey ho, onwards we go,

Reb