ERA/EMMA/ALICE Testing thread 4

[Janefx40]

New thread ladies! @Gardenlady543 @MyEasterEggs @seven201 @VenusStarr @Violette22 @Yuliaaa

@StillTrying10000 when is your 10 week scan? Is that what's happening tomorrow?

@seven201 and @VenusStarr thanks for remembering me. I had scan today, baby was looking perfect at 10 weeks 5 days and the bleeds are looking much smaller and lighter, although I am paranoid they are still there. It was a pretty stressful, feisty consultation as I’m really anxious about coming off any of the drugs so was trying to explain how I’ve been speaking to lots of women in the US who take Tacrolimus and what their plans are and he said ‘I’ve never heard of a patient telling a doctor what to do before’. We ended up not deciding but I will have scans every 2 weeks until 16 weeks with Dr E but he’s on leave most of August so I won’t see him again until September when I’ll be 19 weeks at the earliest, hopefully that means I can keep on the drugs until then. :-)
Then I had questioned if I needed private nuchal as well as NHS nuchal which also ended in a really fractious conversation where he was staying I’m risking all their jobs- I wasn’t refusing, I was just asking what the point was if it was the same thing. He was pretty clear it is much much more detailed and totally necessary which is fine.
So I’m overwhelmed with anxiety as always and still can’t imagine this will really result in a live baby but also I feel so guilty posting such a positive update as I know
its all any of you want too. I really hope you find your solutions soon! Sending lots of love xxx

Such lovely news @StillTrying10000 💕 I'm sorry there is still blood there. Is baby back on track with dates now? I'm sorry you're feeling so anxious. I'd feel the same about coming off meds. How are you feeling on them?

Please don't feel guilty. Sending you lots of love xx

@StillTrying10000 oh wow! I'm so pleased the baby was looking perfect. I know you had a later loss so it is hard to relax but 10 weeks is the main point at which the odds really shift in your favour.

Sorry the doctor was so difficult. You can't have been the first woman he's seen questioning about meds and scans! We're all the same. If we weren't questioning and pushing none of us would have got as far as we have.

Don't worry about him and his attitude. The important thing is that you get what you need.

I'm afraid I don't know whether you need a private Nuchal scan as when I had my daughter, I had much less awareness of immunology, loss etc. I had done NIPT testing tho anyway which made the nuchal scan a bit redundant.

Thank you for sharing your news. It really lifts me to hear positive news. Don't worry though about sharing anxieties. We have all been there and know how terrifying it is being pregnant after everything.

Sending love ❤️

@VenusStarr yes baby is perfectly sized now. I’m not sure if they caught up or if it was just due to the measurements being less accurate when the baby was tiny and it was all a pointless worry.

I’ve been feeling fine the last couple of weeks really, barely any morning sickness which is very different from last time so I had been wondering if the immune suppressants have actually been helping with that. It would really freak me out but luckily I have the baby Doppler to check the heartbeat whenever I start really panicking.

Did AF show up for you today? xx

@StillTrying10000 that is great!! I'm sure he's had plenty of patients ask about changing treatments to go off plan a bit! Him being away for most of august could be quite handy. When do they take it to in the US then? How much bleeding do you have?

My treatment plan includes scans every two weeks for ages too, including the 12 week one. I too was going to ask if I need to do that one, as it's £435 for a scan and consultation - that's a lot of money! I'm sure it's a pretty normal question. Are you doing the nhs one too or just going to do the CRP one? Like you, I'll do it if it's worth it, but don't want to duplicate scans for no reason.

@seven201 in the US a lot of them take it all the way through their pregnancy. They measure their cytokines regularly though and base the Tacrolimus they take on that, but Dr S doesn't do that.
Yes they were all really clear the NHS scan is super basic and their scan will be able to predict lots of things including premature, still birth and preeclampsia so they can potentially do something about it really early on. I mean the guy doing it does sound pretty good, it's the clinic's fault for calling it a Nuchal scan as that makes it sound like the same thing: "Professor Akolekar is actively involved in research and his special interests include prediction and prevention of pregnancy complications such as fetal growth restriction, preeclampsia and vasa praevia with an emphasis on prevention of stillbirths."

NHS and CRP both said I have to do the NHS Nuchal as well as they have to have it for their records. I'm baffled as I don't want to waste NHS resources but they were both very clear. I have Nuchal bloods today and tomorrow, then scans Thursday and Friday in two weeks.

Also I wanted to share my resting heart rate chart from my iwatch. Transfer was early May and as you can see there’s been no way I could have predicted from that I would have made it to 10 weeks. I really hope your scan next week is more positive xxx

@StillTrying10000 how many weeks was your previous loss? Does Prof S not know enough to be able to interpret the results in enough detail for a tailored plan throughout pregnancy? Hmmn, that is frustrating! Thank you for heart rate graph, logically I know I should ignore it, put it's right there on my wrist! Yours is random and obviously your pregnancy is all good!

@Janefx40 how are you doing covid wise and emotionally?

@Gardenlady543 have you got anywhere with moving appointments etc.

@seven201 I had loads of early losses, and one 16 week loss. Dr S hasn't ever used Tacrolimus before, I'm his first patient so it's all new and there's no official research on the drugs use for miscarriage. I'm just so pleased he's giving it a go with me as it's clearly working, I just never want to stop it now.
I know, it's hard not to look at every piece of data, the way I have coped with the last two years is through spreadsheets. I was religious about tracking my temperature too until it crashed at 8 weeks but luckily I had the doppler to reassure me by then. xxx

@StillTrying10000 I really hope he is open to the idea of you continuing on for longer then. Maybe he'll spend his holiday doing research into it . Ooh a Doppler sounds tempting (although I know why people are against them too). I assumed they wouldn't work for a good while yet.

@seven201 I'm feeling quite rough but nothing dramatic. DD was at nursery today which made things easier. DP and I keep arguing because he's gone back to miserable and cross since the cancellation.

Treatment wise the clinic are happy for me to start again on the next cycle but I'm not sure. I think my thin lining/light periods were probably due to having Covid in March so am concerned the problem will come back. Each cancelled cycle is costing us about £900 so I don't really want to start and stop again.

How are you doing?

@Gardenlady543 any luck with booking the biopsy?

@Janefx40 I'm glad you're not feeling too rough. I hope that continues. Good idea to keep dd in nursery! Rest is what you need. I think I'm your shoes I'd be tempted to have a month off to let your body recover. Absolutely devastating to have to wait AGAIN though. I hope you and DH will find your way back. It's impossible for these to not take a toll on a relationship. Just yet another thing to hate infertility for!

All fine here. No idea what our little embryo is up to. Hopefully still beating and having an overdue growth spurt!

We've just realised we missed a lentogest (progesterone in oil injection) dose on Tuesday. Meant to be Tuesdays, Fridays and Sundays. DH is annoyed and says if this pregnancy doesn't succeed he will always wonder if it was the missed injection. I'm of the thought/hope that it probably lasts in your body for ages and I'm also on cyclogest. We're feeling very annoyed with ourselves! My bruised bum did get an extra two days to recover though!

@seven201 don't worry about the missed injection. These things are just back ups. It's not going to impact the development of the embryo. Glad your bum has had time to recover. Xxx

I'm sorry you had that worry and stress @StillTrying10000 I'm glad baby has caught up now ❤️

I'm still waiting for af, I stopped the estrogen and progesterone on Wednesday. My period would be due on Monday in a normal cycle, so hoping it'll be here soon. Feeling very fed up and know there's more waiting to come.

How are you feeling @Janefx40 I'm sorry you and dh have been arguing. Its so hard when you're hit with delays and the additional costs. Our cancelled cycle wasn't that expensive, but it all adds up. And then you're dealing with the frustration.

I agree @seven201 try not to worry about the pio injection. I hope you're feeling OK.

Love to all xx

@VenusStarr thanks. I've been feeling quite unwell with the Covid and obviously frustrated about the cancellation. I get a bit superstitious about particular months and I just felt good about this month. Plus the baby's due date would have been the same as our lost baby's due date (2 years on)- that meant something.

I just feel worn down to be honest.

I feel like a fool for pursuing this nightmare and for letting it go on so long. This is exactly what DP said he didn't want - he didn't want to be on a never ending IVF cycle and I promised him it wouldn't be. But it is and it's 100% my responsibility. What can I say? I've put us both through this and bankrupted us, made us both miserable for nothing.

Hope your period comes on time. Where do you do your cycles/have to our scans? Do you have to go to CRP? X

@VenusStarr I don't blame you for feeling fed up. Sometimes it's worth just letting yourself be utterly miserable for a while then pick yourself up.

@Janefx40 you haven't done this to you both. There's just no way of knowing how ivf will go. Some lucky people just do one round and bam, they have a baby. Then you get the people in the middle who take a few goes. Then there's those of us on here who have accidentally ended up still going, not ready to give up quite yet. You just can't know which category you'll fall in. I have a naturally conceived dd so had no idea it would be like this. I think you have to know you've given it a good try so that it is ever the time to stop, you have the knowledge that you did absolutely try. Sorry about the covid. It's just unfair and crap.

@Janefx40 are you feeling any better from Covid, sorry to hear things are feeling rubbish right now. The financial cost on its own is enough to stress anyone out, I've spent so much and have nothing to show for it :(

They've told me the doctor can do the biopsy at 7:30AM a week on Tuesday but they don't know yet if they can do the LIT on that day as well. If they can then my husband needs to be there at 8:30AM to have his blood taken and then we disappear until about 3PM then return for me to have the LIT then.

The problem is they have my husband and one other donor on the Tuesday and they need 4 donors altogether, so I'd need another 2 people to sign up. If they can't fill those slots then it looks like I have to go to London twice in the same week. I just want this biopsy done though as it could be an important part of the puzzle.

Also sorry to hear you're feeling fed up as well @VenusStarr

Erg to all this :(

How's everyone doing?

It's cd1 today! So hoping I can get a scan and our cycle review with the ivf doctor for next Monday. I'm relieved it wasn't too long a wait.

I hope you can get your LIT done on the sw day as your biopsy @Gardenlady543 have you definitely ovulated now?

How are you @seven201 I'm sending you lots of love for tomorrow 💗

I hope you're feeling better @Janefx40

@Yuliaaa @Babydustt12 @Violette22 @StillTrying10000 @MyEasterEggs ❤️❤️

@VenusStarr hello! Glad AF has started and you can move forwards.

I'm much better thanks. Obviously our situation is still shit but I'm over the Covid and off to see my best pal who is over from Australia. I've got that post Covid confidence that lasts about a week "I can't catch it and i can't spread it....I'm invincible!".

Interesting to see what the scan shows.

Glad the symptoms have eased @Janefx40

It's good you can move forward @VenusStarr :)

Pretty sure I've ovulated according to my temp this morning.

I'm now thinking should I do receptiva (marker for endometriosis) at the same time, the lab can send the kit out to patients and I could ask them to take a sample for it at the same time as the biopsy for nk activity. But I see lots of people getting false positives and false negatives with it. I have the meeting with the surgeon this week so need to ask him if he would be able to do a lap at the same time as fibroid removal.

@seven201 good luck for the scan 🍀

@Gardenlady543 doesn't the Emma test for endometriosis? Or receptiva more detailed? I guess if the test isn't that accurate then how useful would the information be? Would you actually trust it either way?

I'm sure you will make the right decision. You always know what you are doing!!!

@Janefx40 nope, I've never been tested for it.

EMMA is Endometrial Microbiome Metagenomic Analysis

ALICE is Analysis of Infectious Chronic Endometritis

So they are both looking for strains of bacteria with the ALICE looking specifically for the ones that cause endometritis.

I'm not sure what I would do with the information, it looks for a marker called BCL6 which is a marker of the inflammation associated with endometriosis. But I guess I'd only get it if the surgeon can't do a lap (which would be the best way to assess for it) If it's positive I will have to go on several months of downregulation before a transfer and think about whether I want to do lap to either check or check and remove the patches and if it's negative I guess I can be reassured but maybe falsely reassured.

I always thought there was no point in looking for silent endo in my case although I'm now at the point where I've been tested for everything else.