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ERA EMMA ALICE testing thread 7

1000 replies

VenusStarr · 23/02/2023 22:00

Hi all. We're on our 7th thread! Really hoping for some more positive news in the coming months.

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VenusStarr · 15/03/2023 09:44

Thank you all ♥️ I asked for my other posts to be taken down as felt I'd overshared 🤦🏻‍♀️ we've messaged this morning, he's having more tests. Feeling a bit lost and unsure what to do xx

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seven201 · 15/03/2023 10:39

Thinking of you @VenusStarr

I'm just out of my scan. It’s measuring 5wks plus 5 instead of 6wks plus 5. So not ideal, but could be a late implantation or could be chromosomal problem or natural killer cells not under control. Going back next Friday for another scan. My last pregnancy (that was ivf though) went this way though. Aghh.

seven201 · 15/03/2023 10:40

There was a light heartbeat

Gardenlady543 · 15/03/2023 11:39

@seven201 urg I'm sorry you couldn't have a spot on scan for once :( it sounds like there is hope though, I hope things progress for the next scan. ❤️

@VenusStarr how are you doing now?

@Faithhopelove83 I have mine done the day before transfer, hopefully the level should be stable the day before that. Maybe they are doing it then because they need to send it off, I guess it would need to be done like this if there is a weekend and the clinic is shut the day before as well.

VenusStarr · 15/03/2023 11:43

Oh @seven201 I'm sorry you're I'm this kind of limbo again. Did you see Dr Edge? I really hope that the heartbeat gets stronger and when you go back next week there is positive news ♥️ a heartbeat at 5+5 is good, you did think you had late implantation. How are you feeling? These early days are torturous. X

Thank you, feeling a bit hopeless but I can't really do anything at the moment. I'm positive we all need to catch a break soon xxx

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VenusStarr · 15/03/2023 11:46

Cross posted @Gardenlady543 I'm ok. Feel tired but wired and wouldn't be able to sleep. I have eaten a bit. Trying to read by the pool but feel guilty. Had a good cry in the shower earlier.
Hooe you're OK xx

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Gardenlady543 · 15/03/2023 12:00

Oh @VenusStarr ❤️ try and let yourself have some enjoyment. You deserve a break.

Enfys23 · 15/03/2023 12:05

@seven201 i really hope the next scan shows progress, I wish today’s had been more clear cut and reassuring but there’s still hope ❤️

@VenusStarr I am so sorry to hear all this. I do hope he’s okay. Sending hugs

I’ve had a rather stressful start which isn’t what I wanted as embryologists didn’t phone by 10 and they always say they’ll phone by 10, and never been later than 9 before. So I had to ring mid pre transfer acupuncture sesh to see if everything okay. Now heard provisional transfer time isn’t til 4ish so just trying to keep myself a bit zen and occupied after my acupuncture now. World seems to be conspiring against that fact right now though.

Clinic nurses ringing me multiple times about some forms they forgot to send and want me to complete but won’t appear in my portal! We’ve only done them in January anyway and nothing changed. Seems really bad timing in their part to be hassling me. Especially when every call with no caller id by heart’s in my mouth to hear what the embryologist says about the embryo post thaw.

Then just as I’m expecting embryology call, GP surgery phones with no caller ID. I was like get off the phone please! but it was useful info - my autoimmune/thrombophilia screen has come back showing anti cardiolipin antibody is very high which would be suggestive of antiphospholipid syndrome. Not great news but I guess maybe part of the puzzle and means it’s been good call to start the pred and clexane I think?

Still don’t know if embryo thawed ok. Need to try and get back in the post acupuncture zen now.

Gardenlady543 · 15/03/2023 12:08

@Enfys23 the majority of embryos thaw ok, so fingers crossed it will be nice and smooth and stress free. Sounds like it's good you're on prednisolone with the antibodies. I hope acupuncture is nice and relaxing and everything goes well at transfer ❤️

Enfys23 · 15/03/2023 12:11

Thanks @Gardenlady543 hope you’re having a good time on your holiday now!

seven201 · 15/03/2023 13:13

Thanks all. Yes, saw Dr Edge. Don't know how to feel. I was expecting a few days measuring small due to the suspected late implantation, but a whole week is a lot. She did say it implanted away from my c-section niche so that's good. Yet another wait!

@Enfys23 good luck for 4pm. Hope the forms have appeared on the portal! Hope your embryo defrosts nicely. If you're 4pm it would be one of the last to be defrosted.

@VenusStarr I hope you and dh get some
positive news.

Lizzybeth1998 · 15/03/2023 14:50

Hi.
I've had recurrent miscarriages which I believe is mostly down to my age. I've had loads of tests through Tommy's and everything comes back fine BUT then my IVF Dr mentioned ALICE & EMMA which had put my head in a spin.
The tests are very expensive, money is tight and I don't want to waste money on a potential gimmick. Dr Robert Winston says he wouldn't recommend these tests to his own family as they've not been used in a controlled trial.....but the seed has been implanted in my head and now I'm worried! I don't want to waste money but I also don't want to waste a potentially good embryo ☹️
I have no issues getting pregnant, in fact I don't miscarry, I have missed miscarriages everytime and Dr Quemby at Tommy's feels its more due to my age rather than anything else. Any thoughts, advice, experience with these tests?
Anyone needed treatment after these tests?
And what probiotic do they give you and where does it "go" into? 😆
Sorry for the essay, I'm in a pickle and this is the first place online I've found anything on these tests 😬

Gardenlady543 · 15/03/2023 15:05

Welcome @Lizzybeth1998 I wrote about the microbiome here https://www.reddit.com/r/infertility/comments/rwsxwy/theuterineemicrobiomeemmaaliceemenstrualfluid/?utmmsource=share&utmmedium=iossapp&utm_name=iossmf

It's worth checking, there are alternatives that are less invasive and cost less than the EMMA ALICE, which involves a biopsy being taking from the uterus. The cheapest option would be a vaginal swab, I think some people on the thread have had this, that will give you an idea of what's happening in the uterus the other option is menstrual fluid testing with Fertilysis.

How old are you and are your embryos Pgt a tested?

VenusStarr · 15/03/2023 16:20

Hi @Lizzybeth1998 welcome. I'm sorry you have recurrent losses, I do too. That's interesting about Professor Quenby, when I saw her she was absolutely convinced I had chronic endometrisis (i dont, been checked twice) but she wouldn't budge and offered us no other insight or care. Can't remember which is which for the Emma and Alice tests but one checks for it. At the time I'd had 4 losses and we decided to go down Reproductive Immunology and found i have an extremely overactive immune system in pregnancy.
We tested baby number 4 (and my 6th loss, ivf pregnancy) and both were healthy, so we still haven't worked out the right protocol and haven't been pregnant since November 2021. I'm 39 now, not pgt tested embryos as I only got 3 (my second round was a total flop and we've been on a long ttc break and will try superovulation before / if we do ivf again. Interestingly, my age has never been mentioned as a factor in our losses 🤷🏻‍♀️ I do think its a bit of a cop out 'reason' that doctors and clinics cling to when they actually don't have an idea why healthy babies miscarry.
I was told by Tommy's that the fact I lost 2 healthy babies (and they were both MMCs at exactly the same point as my first
2 MMCS, to the day. So likely it was my immune system rather than chromosomal issues) should give me hope that one day I will get to hold my child... but offering no support.

@Gardenlady543 is very knowledge about lots of testing x

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clhiu · 15/03/2023 16:41

Hi @seven201 sorry to hear you got mixed results from the scan, I have been there with my last pregnancy and it's a very stressful place to be till the next scan, I send you all my best wishes, they also tell me that early on measurements can be severely off, like more than 1 week so hopefully it's just that.

@VenusStarr sorry to hear of all the additional worry with your DH situation, I hope it can be resolved and you can still enjoy the holiday as much as possible. Haven't read the deleted posts so not fully sure about teh full situation, but wish for things to improve for you and dh soon.

I received my results and had the follow up consultation today. ERA shown I was in the receptive window so keeping to the same protocol for FET. ALICE shown no infection or bad bacteria. EMMA shown lactobacillus lower than it should be so I was recommended 14 days of probiotics and choice as to whether to a second biopsy at the end of it - I said no as I don't want further delays and understand this is a fairly minor issue. NKC biopsy also shown normal levels however the bloods shown one particular value was higher than then consultant would like and some studies associate lower levels with better implantation success so she recommended 3 rounds of intralipids, but no steroids thankfully, I was dreading that. I have no idea how much intralipds will cost, but I was hoping not to have to throw any more cash at it. Anyone has much experience with intralipids here?

So paperwork and admin aside, she was happy to go straight ahead with FET at last, I'll be starting prep tomorrow with Norethisterone and then my next period will be the FET cycle. It's my first ever embryo transfer of my only euploid embryo and I'm worried sick, but I just need the day to finally come.

Gardenlady543 · 15/03/2023 17:13

@clhiu my intralipids are £300 each time. Sounds like good news on the test results :)

VenusStarr · 15/03/2023 17:27

@clhiu I'm glad you've got some results and hopefully not too disruptive to delay you further.
I have intralipids under Dr Shehata but his clinic is about £380 per drip. I think other places might be slightly cheaper. Depending where you live Cherish in Sutton Coldfield do them but if you can get them at your ivf clinic thats probavly easier. The actual process is ok, the worst bit is the cannula, takes about an hour so I always have a book with me.

Thank you for your well wishes, dh is still I'm hospital. Been on and off iv fluids and meds all day ☹️ just going to see him xx

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Gardenlady543 · 15/03/2023 17:37

@VenusStarr my intralipids run in slow too, the nurse said they usually run them in 30 mins but it will just go in at its own pace and it's so thick. I had them change the cannula to a bigger vein last time. They insisted on a hand vein for my recent one and it took about 1.5 hours 😳

How are you getting on, is your partner feeling any better?

I went to get a shiatsu massage yesterday, it's the kind where they walk on you, omg was it painful and I was worried about how fragile my bones are as I've not been taking enough calcium, which I really need to do with the steroids I'm on. She kept saying, "what have you done to your body?" Apparently my neck and lower back were really stiff.

Enfys23 · 15/03/2023 18:13

Hi All. It’s been a bit of a stressful afternoon so sorry I’m not responding to messages but the embryo stuck in the catheter twice so procedure needed doing 3 times. I really hope that it hasn’t messed up the chances of this working. Has anyone had this happen before?

Between delays in me going in, and taking a while, then caught in rush hour traffic only just got in. Feel my head in a bit of a spin with it all but going to try and stay positive. Can’t change anything now just have to hope for the best. Bright side - embryo was doing well, progesterone level 78, and based on the thrombophilia antibody results that came through today consultant really glad I’m on clexane this time. Now starts the 2WW…

seven201 · 15/03/2023 18:15

@clhiu thank you. Intralipids at CRP are £380 per go and it's before ovulation/transfer, 4 weeks, 8 weeks, 12 and possibly 16 (can't remember!). I'm glad you have a sensible sounding plan put together and can going again soon. I don't have any reaction to intralipids personally.

@Lizzybeth1998 I use orally femdophilus 5 billion usually and canseflor vaginally. I do have some others I sometimes swap in. I think one is called flora femme or something. Some you need to order from the US.

@Gardenlady543 are you going to stock up on probiotics while you're on holiday Grin

Gardenlady543 · 15/03/2023 18:21

@Enfys23 I've heard of this happening before. At my clinic and I assume others the embryologist has to check the embryo isn't still in the catheter. Like you say you can't do anything now and nothing you did could have changed what happened, so fingers crossed that everything goes smoothly from now.

@seven201 I wanted to, but the shipping would have meant I wouldn't have got them in time (we leave on Saturday) and you can't get them directly from stores. It's a good thing I didn't order ahead as I'm not in that old Airbnb now and imagine after the ceiling fiasco if a load of vaginal probiotics turned up there!

Lizzybeth1998 · 15/03/2023 19:13

Thank you! Very informative but scary!
Seems sort of pointless if it can come back so quickly!
But it looks highly beneficial to keep gut health as good as possible and also using probiotics in the vagina.
Just very scared to spend 1k and not be able to fix an issue IF I have one 😬
Also I found this article with Dr Robert Winston, what do you think about what he says?
Thank you again, your article is very very informative and I think I will need to reread it a few times 😆 lots of info to take in!
genesisresearchtrust.com/askrobert-questions-and-answers/emma-alice-and-era-tests/

Lizzybeth1998 · 15/03/2023 19:20

Wow, you had quite a different experience with Dr Quenby, she almost sounded rude towards you or at least short!
She was lovely with me, she did a load of blood tests but the baby I miscarried had been tested as Trisomy 8 but not deemed as from a hereditary issue, just my age sadly 🙄
She said that type of pregnancy usually ends in a period but I've hung on to all of mine, all a missed miscarriages. Her words were, I am a hanger oner not a letter goer ....which at the time seemed good, my NK killer cells were tested a few years ago and again very good.
So thought it was all sorted, then this was suggested, more tests costing loads.
Thank you for your reply, learning lots here and leaning towards doing the tests or at least getting the probiotics.
I see there are other similar tests, wonder if I should do the pricey ones or the cheaper one 🤷‍♀️ what's the difference and is one more accurate than the other, gah! Lol just when I thought I'd done all the tests!
Thank you again 😊

Lizzybeth1998 · 15/03/2023 19:22

Ok, thank you for advise, taking it all in! 😊

seven201 · 15/03/2023 19:42

@Enfys23 sorry that it wasn't straightforward. The embryo is in the right place now, so try and focus on that.

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