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[RebJT]

Hi

I wrote a long and rambling thread the other day about iron deficiency (sorry, head was in the shed), but I'm on the up a bit with that now I think, particularly after adding a big dose of folic acid on doc's instructions. 

Reason for post, I seem to be prog intolerant (whether I'm officially "intolerant", or just a bit sensitive, don't know) but the long and short of it is I'm bleeding to death every month and just had to have an urgent IV iron infusion to get me off the deck with very serious iron deficiency anaemia.  Having to have a month off work because I'm so knackered, and need to now make sure all this lovely iron doesn't drain away. 

I'm also wondering given the massive amelioration I've had in weird and whacky symptoms in the three weeks since the infusion (anxiety, shaking, internal vibrating feeling, much lower histamine intolerance symptoms, mood etc all very much better) whether in fact all my problems are explained by long running (it turns out) iron deficiency and that is my main issue.

My gynae says that of the 20 prog intolerant / sensitive ladies (and those who are a bit histamine-y and allergic) who she's given jaydess, all say it's the best thing they've ever done.  She said all these ladies were like me, can't seem to get on with hormones like others, and all are flying along on the Jaydess.  So twenty isn't two, it's a sample size worth paying attention to I think.

How have you got on? 

The advantage for me, if it suits me, is it'd stop my periods, stop me going anaemic, plus I could go back on estrogel (I feel bloomin brilliant on estrogel, love the stuff!) to my heart's content, knowing my endometrium was OK, and I didn't need any other prog.  It's meant to work locally, not systemically, so in theory I shouldn't get the big prog intolerance symptoms.

I'm 48 and in peri so it'd also sort my contraception.

Disadvantages?  I'm worried about low mood, weight gain and feeling mental to be honest.  Mini pill never suited me, and can't seem to get on with utrogestan.  I'm also worried about getting it taken out by the unsympathetic b@stards who seem to be my local practice in the middle of a pandemic should the worst happen.

I'd be grateful for any wisdom and experiences.  Is there a length of time you're meant to stick it out to see if it suits, and does it work better or worse (or no difference) with or without the estrogel?  What sort of side effects would I be looking out for?

Thanks

[RebJT]

Bump

Anyone?  It's jaydess or Qlaira.  Doc doesn't think I'll do so well with Qlaira because it has more prog but really need to sort the havoc of anaemia.  Be grateful for your feedback.

Thanks

[Perinowpost]

RebJT type jaydess into the search box and you’ll be able to read about others experiences with it. I don’t think there are that many though tbh. I had a failed insertion attempt and sometimes wished I had tried again, however, the mirena was too much for me so I’ll never know

You could try Qlaira first (for 3 months say) and if it doesn’t work then try the jaydess. Don’t give up, that’s the important thing x

[RebJT]

Thanks, yes I tried searching but the results are so scrappy it's hard to get any coherent information.

I'm going to try editing the title of my thread to see if that helps.

Trouble is happy customers aren't on the internet, so I think even responses here are a bit skewed as it's only really women struggling who take to writing posts.

I already have a script for Qlaira so could try it whilst waiting for my jaydess appointment ...

[MadameOvary]

Hi
No experience of Jaydess but I'm on month 2 of Qlaira and so far so good.
Like you, I had impossibly heavy periods and take iron supplements every day. My withdrawal bleed/period on Qlaira was the best period I've ever had. 3 days long, light flow, hardly any pain (usually I take ibuprofen for 2 days of my period but I didn't need to take anything last time). I can't describe how much better I feel simply due to not losing so much blood each month. I might stop taking iron tablets.
It hasn't cured all my peri symptoms (I'm still struggling with insomnia) but I'm really happy with it. There haven't been any negative side effects.

[RebJT]

Hiya

Thanks so much for getting back to me, that's great news, heavy periods and iron deficiency re miserable as sin (and because I also have thyroid issues, low iron just makes me feel loopy as it's hard to tolerate thyroid medication when iron is on the wonk).

Can I ask, do you get along OK with progesterone usually?  My gynae prefers the Jaydess option as it's lower dose prog, as I seem to struggle, but can't say for certain as iron gives me such baffling horrible symptoms its hard to see the wood for the trees.  I think the thinking being Qlaira has more prog in it taken orally.  Sounds like this hasn't been an issue for you.

I'd cut my right arm off for normal light periods!

Thanks

Reb

[MadameOvary]

I'm not sure to be honest. One of the reasons I went on Qlaira (as well as the awful periods) was terrible PMT getting worse due to peri. Really low mood, high anxiety, rage, insomnia etc in the 2 weeks before my period. But I'm not sure if that tells you anything about whether I'm sensitive to progesterone or estrogen.

I don't know if it's helpful but I know that the progesterone in qlaira is anti androgenic which I think makes it easier to tolerate than some other forms of progesterone.

Isn't Jaydess a progesterone iud, like mirena? I considered mirena but was put off by idea of something I couldn't easily remove if I didn't get on with it. I figured the pill was a better place to start because I can easily stop taking it if it doesn't agree with me.

Honestly, 3 day, light periods are a joy. I couldn't believe it. I nearly cried with joy after so many years of pain, mess, and exhaustion.

[RebJT]

Hi

Thanks, that's really helpful.  I think I'm right in saying it's the rise in progesterone before our period that causes PMT?  I am getting what I can only describe as 'vibrations' inside and literally at day 14 and just before my period, horrible shaking, jittering, tearful, just unwell feeling - something just feels horribly off kilter and out of whack.  My pulse goes high, my BP goes really really high.  My histamine increases.  I'm also getting pain in my left side.  I had a D&C a year and half ago for polyps but periods are worse not better since then.  I think it's high estrogen spikes due to peri and not enough progesterone.  However, I cannot seem to settle on a progesterone routine that suits me.  I had a utrogestan 100mg vaginally last night (day 14 since my last bleed but my cycle has been so up the spout with low iron, I don't really know where I am with my cycle) and I feel less vibratey today, although still feel ill and tearful.

And yes Jaydess is progesterone, it's quarter of hte dose of mirena and the logic is it should in theory only work on the womb and not systemically (ie throughout your whole body) thus cutting down side effects, but from searching here, online and on mumsnet, I cannot find a positive review anywhere of a woman getting on OK with it.  Doesn't mean women aren't, I just can't find any info of positive experiences.  Add to the fact the NHS is currently shut, and my GP practice would give the Gestapo a run for their money, I'm not really minded to trust them to look after me if Jaydess goes wrong, so like you I like the idea of a pill and being in control.  I've also never had kids, so worried about getting the darn thing in as well.

My (lovely) gynae has written to my GP to ask them to scan me before we consider jaydess but I've heard nothing, so just about to try and organise a private one with the Nuffield if I can, as I am now worrying about my womb lining or whether polyps are back, but I just can't keep losing iron like this.

I have Qlaira, it's already been prescribed so I am almost decided to try it next period and just see how I get on.  The symptoms of low iron are so catastrophic for me, I just can't live like this, I've just had an infusion but if I keep bleeding like this, I'll be back to square one in no time.

Thanks

[MadameOvary]

You have my sympathy. The jittery, out of kilter feeling you describe in 14 days before your period is exactly how I felt. The Qlaira really has made a huge difference. The only symptom it hasn't fixed is my insomnia. But all those jittery, racing pulse, panicky, tearful feelings have just disappeared.

The progesterone dose varies throughout the month on Qlaira. There are some days with no progesterone. I probably feel at my best on the high estrogen/low or no progesterone days. But even on the higher progesterone days I still feel so much better than I did on my natural cycle.

If you've already got the Qlaira, I think I would give it a go (bearing in mind it will take a few months to feel a difference). At the very least you could have a bit of respite from your heavy periods which would help with your anaemia.

[RebJT]

Thanks so much for replying, I think I'm going to try it.  Gynae says I'd know within two weeks of Qlaira whether I'm going to suit the prog (accept it takes longer than that to really know if it'll suit me), so whilst I'm waiting for GP I might as well try.  I also need contraception, as my partner uses a drug for psoriasis, which gives him ED, so he has to use an ED drug and condoms are let's say a total passion killer ... to be frank, and the very last thing I need right now is to get up the duff as well!!

I've managed to find a private scan company still operating through lockdown, TV scan, £90, can do tomorrow, so think I'm going to do that ... that'd lay my mind at rest re endo or polyps or whatever.

Final question, did I read somewhere that some women are able to top up Qlaira with estrogel once they're settled, and tweak the estrogen dose (ie there's enough prog in Qlaira to act as the prog element of HRT - of course well supervised by a gynae)?  I felt absolutely bloomin fantastic on three pumps of estrogel, I think if could find a progesterone that suits, I'd be off to the races ....

Anyway, thanks again

[MadameOvary]

Hi

Not sure re topping up estrogen. Why not give it a go on its own and then talk to your GP or gynae about topping up in a few months if you feel you need to?

Good luck!

[RebJT]

Hi there

Thanks, yes think I'm going to do that.  Managed to get a private scan on Friday, really efficient and only £90, lovely nurse, next day appointment.  My endometrium is just over 10mm on day 17 of my cycle, which she said isn't dangerous, but more than they'd expect at this point in my cycle.  She said it looks like I'm about to get a period and she thinks this is lack of progesterone.  In happier news, for the first time ever I've managed to tolerate 100mg of utrogestan vaginally for 5 nights in a row (actually feel better and less shaky and vibratey!) so I'm hopeful - always dangerous! - that perhaps I'm not as prog intolerant as I thought, and wonky iron had more to do with my baffling symptoms.  I've still got dragging pain like I'm about to get my period (now on day 19 since last bleed) and my tummy is sticking out, which is a new thing over recent months, I get a very distended belly which I guess is my uterus complaining, but I'm doing OK.  Been reading up on Qlaira, far more positive experiences than negative, unlike jaydess (I cannot find a positive account of jaydess anywhere on the net, not one) so I think it's worth a go, at least whilst I'm waiting for the NHS and a possible jaydess appointment.

Will keep you posted and join your Qlaira thread once I start on it.

Reb
x

[MadameOvary]

Good luck Reb and keep us posted. I've just had my 2nd period on Qlaira and once again it lasted 3 days and was light/medium and pretty much pain free. I can't actually put into words what a huge relief this is after a lifetime of heavy painful periods.

I'm noticing that I feel my best on the higher estrogen days at the beginning of the pack. Much more productive and I sleep better. If only I could feel like that all month!

[RebJT]

Woo hoo!  That's great news for you, long may it continue.

I feel like I'm about to start (day 19!!) and feel a bit all over the show this afternoon, some steadiness would be lovely.  But perservering with the utrogestan, going to see if I can do at least the minimum seven doses.

And yes I think several women experience what you experience, which is why I think some top up with estrogel once they've settled a bit and found out where they feel good and where they don't, going to ask my gynae about this, assuming it suits me and I can tolerate the prog.

Watch this space!

Reb
x

[RebJT]

Just bumping in case any Jaydess ladies see this as I'm still struggling to find anyone with experience of it.  Nothing much comes up on a search of the forum.

Thanks