ERA EMMA ALICE testing thread #6

[Gardenlady543]

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22 @2021ivfagain @OrangeBengal @Enfys23 @Loz2467 @DEIVF @Hopeful199 @ER12 @greendress789 @Douchas12111 @Lori2022 @AdviceForJane @Anonbaby @Molls87 @ChickenT2b @GoldenElephant @IVF22 @StillTrying10000 @warrior101 @whatcangowrong @Yaynayokay

Oh yes it really has happened we are onto thread #6.

All are welcome to join us, we started out as people interested in ERA EMMA ALICE but we seem to have had every test available between us.

So if you want to know about the microbiome, reproductive immunology or you just feel your case is complicated and what like minded people to talk to about it you've come to the right place

@Loz2467 the first cycle of IVF often results in information, how you respond, how many eggs you get, how they fertilise, how many make it to blast, the quality of the blasts. So I hope you'll know more once you've had the cycle.

I’ve asked these questions on another thread but I’m thinking people might have more experience on this thread.

I’m due to start reducing my dose of 20mg prednisolone at the end of next week, by 5mg every few days, and will be off it completely by week 13. Is this similar to others?

Also, I’ve just had my third dose of intralipids at 10 weeks and Dr Gorgy wants to retest my immunes at 12 weeks. Has anyone had further immune testing during pregnancy? I’m open to it but was surprised he suggested it. I thought I’d just have the treatment but I suppose there’s a chance I might not need it.

@MyEasterEggs if I get pregnant, I'm on 20mg prednisolone till 12 weeks and then my weaning off them will take approx 4 weeks in total. So I'd be fully off them by 16 weeks. As for the immune testing, I've not heard of it but I'm under Care. That might be his plan, especially with your history. It can't be a bad thing to have a further test, if anything it might ease your mind, I know it would mine

@MyEasterEggs the CRP plan is to be on 25mg pred until 12 weeks then week off at a rate of 5mg less per 5 days so off by 15 weeks. CRP don't re-test immunes but ARGC re-test every 3 weeks x

Sorry "wean" off

Thanks @Gardenlady543 there is so much to think about isn’t there.

Im just worried that taking the progesterone us masking the brown spotting issue and not actually figuring out what’s going on? I don’t n is if to try and get a lap and dye done on my work healthcare. The first Dr at Care referred me straight away for one in January but the NHS list Isn’t moving! As soon as he knew about the brown spotting that was his referral.

My other Dr at care doesn’t seem as bothered trying to get to the bottom of the spotting.

Not sure if to try and get a lap in Jan or go straight to IVF. I’ve heard you can have endo with no symptoms and pain but seems strange it could start so late. Someone I follow on ig has had brown spotting since a miscarriage and it was endo in 17 places!

Oh yes @Loz2467 def try and get it through insurance. Go straight for a gynaecologist rather than someone that also treats infertility and don't mention infertility. Just say it's to explore whether you have endo.

Thanks @DEIVF @Janefx40. Since I’ve had a loss in the second trimester I’m going to see about staying on the pred until 16 weeks and weaning off from then. I’m being expected to come off loads of drugs at the point just before I lost my son and it’s making me feel like less and less is protecting the baby. But I don’t want to be on it for too long as I understand there are potential risk factors. Will definitely have the repeat immune test, just for reassurance.

@MyEasterEggs I'm not surprised you feel that way, I think I'd feel the same If I was you. Had you been on the same medical support when you had your 2nd trimester loss?

@DEIVF no I wasn’t on any medication. Was having what I thought was a normal, healthy pregnancy. He was my second and I hadn’t experienced any fertility problems before then. All my scans were fine, nothing of concern at 12 weeks, then I went into slow labour at 16 weeks and discovered I’d lost him. Since then we’re had five further losses, all in the first trimester, but I’ve just had my 10 week scan (last loss was at 10 weeks) and I’m now further on the those pregnancies. Trying to stay hopeful but I’m getting more anxious as time goes on.

I’m seeing the midwife for the first time this Friday so will speak with her and hopefully get a speedy referral to a consultant 🤞🏻

@MyEasterEggs It's reassuring that you're further along than your previous first trimester losses, the medications are doing the job. I do understand you being anxious the more time goes on and you approach the 2nd trimester. It is standard protocol for clinics to wean off / stop meds from between 8-12 weeks (depending on the clinic) and this is based on evidence that medical support isn't needed after the first trimester. I know it's hard to trust this, especially with your history. I think it's a good idea to speak with a consultant, you can discuss your worries, ask questions and they'll hopefully be able to reassure you. Gorgy is continuing to monitor you, which is reassuring and will hopefully put your mind at bit more at ease

Yes. You’re right @DEIVF. I’m really glad I have Gorgy’s support. I’d have been lost without it 🙂

Hope everyone is doing okay.

Sending supportive hugs @MyEasterEggs must be so so hard to not worry out of your mind and try to enjoy this stage too. I hope the midwife helps with speedy referral.

@Gardenlady543 hope all going well you are making me laugh with apple cider vinegar blobs and talk of increasing bum size for injections 😂. Progesterone issue sounds a minefield. I’m sorry can’t really help with it.

Well I’ve got my TRIO biopsy result back. Bit mixed but on whole okay.
ERA showed post receptive so lab advising repeat 1 day earlier. I’m speaking to dr at clinic on Monday about result. Did anyone else have to do repeat biopsy for ERA? I guess gives chance to try new regimen for thickening lining but I’m also just seeing more money out and more time passing too (suspect might not be doable in December with bank holidays etc). Every month feels so precious knowing my ovaries are quietly failing away.
EMMA and ALICE were okay in terms of 93+% lactobacilli (Optibac intimate flora probiotics I’m on must be getting where they need to) and 6+% others. With no pathogenic bacteria. I’m happy on one hand but disappointed it didn’t provide answer to why my lining thin - chronic endometritis caused by bug seemed easier problem to fix than an endometrium that just isn’t responding to oestradiol…
Tuesday’s hysteroscopy was rescheduled to early December with less than 24 hours notice - almost regretted getting NHS referral for this! But it is saving us lots and trying to be grateful its still happening soon.

That's so annoying about the hysteroscopy @Enfys23 have you got a new date? Great news on the EMMA result. Post receptive isn't that common. I really don't believe much in ERA these days. If you don't want to repeat it then you could just move the transfer to a day earlier.

I'm CD1 today had an absolute nightmare getting in touch with the nurses, finally heard back at 4:45pm and they have no protocol for me. So everything is up in the air and I don't have reassurance that I'm taking meds at the right time. First scan is booked in for thurs though and intralipids on Friday.

That’s ridiculous @Gardenlady543 surely they should have done the protocol ahead of time so it’s ready to go for you? I’m sorry. I hope you get answers tomorrow. Glad you’ve got some dates now.

Thanks yes so annoying especially as felt guilt about messing around my work but really not my fault. I’ve just got new date for 8th Dec. It’ll be cutting it fine and really have to cross everything AF doesn’t arrive early.

Yes I’m going to do a bit more research but I do wonder whether just moving transfer a day early will be fine. It is in the interest of the lab to say repeat isn’t it! I know it’s a HFEA red but I thought given getting EMMA and ALICE done I would just get all 3 done but now hard to know how seriously one takes that info.

@Gardenlady543 what a stress! At least your scan is booked in and hopefully they will get back to you tomorrow. What meds are you on?

@Enfys23 I wonder if any other ladies on here were post-receptive. I don't remember anyone having to do a repeat so soon but maybe I'm wrong.

@Gardenlady543 That sounds such a nightmare. I hope you managed to get your protocol sorted. Would you say for “unexplained” to definitely get the lap done? I haven’t even started moving my health insurance over yet. I was kinda hoping to get an egg retrieval in Jan. if first transfer didn’t work (which I’m obviously not counting on) then trying the Lap to investigate. I just don’t know why this Dr hasn’t suggested it? I just want an answer for the brown spotting. If I don’t manage to get pregnant again or have another baby I don’t want this till menopause 🙃 it’s like 2 weeks out of the month because I’m spotting before and after a period but my period isn’t heavy. Can you suddenly develop endo at 35? Is that a common thing to happen?

Any joy with getting a protocol confirmed @Gardenlady543 ?

@Enfys23

I think I mentioned this before but there is a study, only the abstract published

www.fertstert.org/action/showPdf?pii=S0015-0282%2821%2900882-7

Both the study group and the control group had an ERA, the study group followed the ERA advice, the control group ignored the ERA and did the transfer at 123 hours +/-3 hours. Recurrent implantation failure and recurrent miscarriages were excluded, but it’s interesting to see what happens when the ERA result is ignored:

Limiting the analysis to those for whom ERA recommended a change in transfer timing of at least 12 hours (only Pre- and Post-receptive results, excluding Early and Late receptive; N=243), 63.3% of Control and 54.5% of Study subjects had an ongoing pregnancy (RR 0.86; CI 0.62-1.19; p=0.20).

So there was no difference between the group that followed the ERA advice and those that ignored it.

I also know someone whose specialist does the transfer a day early in everyone as they think they get better results and when they do the ERA a day early most people come back as prereceptive but it still works at that timing.

My other criticism of the ERA is if it really is specific to this exact timing then why isn't the stage of development of the blast taken into account because a full blast isn't going to be implanting straight away vs a hatched blast.

@Janefx40 I'm on letrozole 5mg CD2-6 then I do pred 25mg and clexane from CD7, I have a gonsai 5000 trigger and well I'm sure everyone knows my progesterone regime!

@Loz2467 I don't think a lap is indicated in unexplained unless there are concerns. Something I've seen in recurrent implantation failure patients is many end up getting diagnosed with endo though, so it's worth doing to check it off the list after a number of unsuccessful transfers. That's why I was keen to get it done with the fibroid surgery.

My day of communication has not gone well, got the protocol uploaded and it's wrong. Talks about estradiol, says my husband needs to go to the clinic for some reason on a day he isn't around, says first scan cd11 when I was told cd8, wrong timing and dosage of heparin and steroids. Scan is still booked in on the system. My neck is as tense as possible, it's a terrible start to my cycle, just chasing around and worrying. Nothing I can do, I need to try and chill out a bit.

Oh @Gardenlady543 that’s really not what you need right now. I hope you’ve managed to find some way to destress as much as possible from it all. It’s so unfair that so much of this falls on us to chase and correct etc. I really hope the next few days get better and you can stay nice and chill.

Thanks for the info. I chatted to my husband and we feel as well ERA will be limited as my protocol of meds unlikely to be the same as we will have to make changes to get the lining thicker so that in itself devalues the ERA as one should use same meds protocol for ERA and FET cycle. I’ll have a chat with the dr on Monday. That appointment is specifically to discuss the TRIO results. Then my usual consultant doing the hysteroscopy on 8th so can ask their opinion on things too and hopefully get plan for lining and January FET 🤞🏼

@Loz2467 I think while endo might be responsible it won’t change what they do in the IVF and any surgery such as lap comes with risk including damage to ovaries and ovarian reserve as potential. Your AMH looks reasonable for your age though? Chat to a dr you trust but we were very much advised our first IVF cycle has to be viewed as a learning cycle. If it works first time then wow count oneself lucky but otherwise it helps gather info on lots of aspects. Are you hoping doing lap will mean you try naturally for longer before doing IVF?

@Gardenlady543 I'm sorry about the stress! Glad your scan is booked in at least so you know you can go ahead ok.

I hope so @Janefx40 I'm just worried in case they just cancel things based on the paperwork. I started my letrozole last night so hopefully it will all go ahead. Also worried about the transfer falling on a Sunday and getting cancelled.

All this talk about ERA is making me worry, we'd planned on ignoring the 1.5 extra day result and going with 0.5 extra days, but now we are doing natural modified I'm not sure what to do. As I'll be using a trigger, they won't delay the transfer, so do I start progesterone 12 hours earlier than they tell me to. Or should I just ignore the whole thing, so a transfer at the standard timing and see what happens. I'd followed the ERA recommendation twice with euploid embryos and had no implantation so it didn't help me before.

How's everyone else doing, is anyone else doing a transfer cycle at the moment?

That’s a lot to be carrying in worry @Gardenlady543 crossing everything things do not fall on a Sunday for you.

I don’t think the ERA can be applied to other types of cycle ie different medication protocol to mock cycle when ERA done, and more I read about it more limited it seems. I think just forget about it and don’t let that worry you in top of everything else.

HI @Enfys23 I was post receptive. Day 6 for embryo transfer. I had the ERA repeated and it confirmed this as they did the ERA in Day 6 and it came back receptive. My next transfer after this worked however we also changed a whole week of things so I don’t know if it was just down to the ERA.

@Gardenlady543 so sorry for all the stress you’re having. I hope you are able to relax this weekend and do something nice for you. I have all my fingers and toes crossed for this transfer. Really really hoping it works for you.

Sorry @Enfys23 I think I misunderstood and post receptive is that you missed your implantation window by day 5. Apologies. Could be worth repeating it earlier and seeing if it comes back receptive if you are concerned