ERA/EMMA/ALICE Testing thread 4

[Janefx40]

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

@patientpatient

Hi

Gosh what a frustrating journey.

What tests have you had to date? Bloods, biopsies, scans etc

Have there been any issues or concerns in the cycles- lining appearance, etc

Do you think PGT-A testing of your frozen embryos is something you’d consider?

Have you had Karyotype testing, I’m asking as the longest pregnancy you had was abnormal when tested.

ERA- will tell you about receptivity, you have implanted and had an ongoing pregnancy (vs chemical), so it may not tell you much.

EMMA ALICE could be useful, the alternative is the menstrual fluid testing through fetilysis, which you can see we’ve been discussing recently. If you order this kit now then you can collect the sample when you have your bleed. Then you take a mid cycle vaginal swab and send the kit back to the company and get the results about 2 weeks later.

If you did ERA EMMA ALICE this is done in a mock cycle on what would be the day of transfer, it involves a biopsy being taken from your uterus.

Other suggestions will depend on what you’ve had tested to date. You’re on steroids already, have you had immune testing?

Thank you @Gardenlady543.
Yes I've had karyotyping.
I was initially meant to have freeze all x3 cycles starting back in Jan 2022 with PGT-A; but because the outcomes of # 4 and #5 were so poor, we didn't get to that. This last cycle #6 it actually seems to be forgotten, and they were all frozen. So I'm reluctant to freeze-thaw twice with biopsy and PGT-A incase it damages the embryos.
I think I'm going to push for double transfers, because I can't cope with one by one approach anymore.
I'll check out the fertilysis tests you guys have been discussing. What are the pros of using menstrual blood and mid cycle swab compared to standard EMMA/ ALICE which a clinic would do? is it just cost?

@patientpatient the technology is exactly the same, both look for bacteria RNA. My friend had ureaplasma missed on x2 EMMA ALICE and this was picked up on every test she had after: 2 x fertilysis and 2 x vaginal swab.

EMMA ALICE is more expensive, it needs a mock cycle which takes longer and it is more invasive, but it will directly take the sample from the uterus, rather than the menstrual fluid which I guess could become contaminated by the vagina, but usually what is happening in the vagina is pretty similar to the uterus.

Have you had any scans- HSG, saline scan or hysteroscopy?

Dear @Gardenlady543.
oh that sounds very accurate then.
I have had hysteroscopy, HSG too.
I am convinced it's been a combination of ongoing immune, MFI (no removed as we are using donor sperm) and now my age (38.5).
I'm open to using double donor if my frozen eggs don't work out. Can't face another stimulated cycle. But if it is immune I really would like to push for the ERA/ EMMA/ ALICE.
We had genetics done on fetal tissue which showed chromosomal issues; though our own karyotyping is normal.

Thank you for your swift response and sharing your knowledge.
where are you in your journey? Lots of luck to you also xx

*frozen embryos

Hi @patientpatient I'm so sorry for your loss and for your difficult journey.

Did your DP ever do DNA Fragmentation test? Am just asking as it is notable that you had 4 cycles with none to freeze (plus one with a few that didn't work out) and then have switched to donor sperm and had 7 blastocysts. If the sperm was the main cause (which we can probably never know for sure) then this next 6 is a total new start. I realise you have had a negative but that can happen with any sperm, healthy or otherwise.

But yes I would personally be checking everything before transfer. I did an ERA even though I knew it was probably unnecessary. It was expensive and delayed us so I kind of wish I hadn't bothered. But I did it because I thought if I got another BFN I would wonder if I should have done it and not wasted an embryo. We did have a chemical with a euploid post-euploid so I suppose I can't really regret it for that reason.

Most clinics only go so far in terms of immunes. I am at CRGH but seeing Dr Shehata at CRP for a more thorough treatment plan. If you really want to go all in then Dr Gorgy will throw the kitchen sink at it. I personally think it is worth it but all of this is ££££ and time.

Hi @patientpatient I’m sorry for the situation you’re in. Welcome to the the thread.

@Janefx40 I’ve too reached the stage where I’m willing to throw everything at it for the final attempt.
I’ve got an appointment with Dr Shehata.
What does Dr Gorgy do that Dr Shehata doesn’t?
We’re looking into dna frag for my husband.
Is there anything else that I’m missing that I should be doing?

I should probably do the EMMA/ALICE… (thank you @Gardenlady543 for the info about fertilysis.)

@patientpatient if you scroll down a few posts to Tuesday 18:38 I wrote a long post about where I'm at at the moment :)

I had my Gorgy appointment today
He said

• My uterine Nk Activity biopsy, KIR test and insulin resistance test were all normal so he will base treatment on my implantation failure on the raised NK56 cells and DQA1 match.
• I will continue with the LIT as planned and after my next LIT I should have a LAD test to see if I've responded.
• He said I should start hydroxychloroquine 200mg twice a day from 1 month before the transfer cycle and then if it works at 20 weeks they may reduce the dose down to once a day.
• I should take predinisolone 25mg from the FET cycle CD7- 20 weeks pregnant
• Take heparin from between CD7-CD10 daily (earlier than I've been taking it)
• Have intalipids for the first time from CD7-CD10 and then again if I find out I'm pregnant.

If pregnant
I need to book in with him and he talks about the next plan as he will need to check CMV and then arrange LIT (either donor or from my partner)

We spoke about the ERA and he said maybe I could do 5.5 days given the lab aren’t happy that the result is reproducible.

He said if I have endo on the lap to do a prostat injection 2 months before the cycle and then I would have another injection at the start of subsequent cycles.

He said lubion doesn't increase progesterone in the blood as well as PIO, so suggested I do 2 x cyclogest and PIO every other day instead of my current regime of 2 x cyclogest and daily lubion and check progesterone level the day before a transfer.

So that's all decided, now I just need to get through the surgery which is in 4 weeks.

@Gardenlady543 great. That sounds really thorough. Are you feeling happy with the plan.

I used to have to take Lubion twice or three times a day - it has a shorter half life than PIO. It is also way more expensive than PIO tho so if you can hack PIO then go for it.

@Janefx40 oh wow well if PIO is cheaper that will be good. I will have to do my own injections so I'm not looking forward to it. People in USA inject themselves and use autoinjectors to do it.

I think I expected this treatment plan, so I guess I'll just have to see if it makes a difference.

@Gardenlady543 the cheapest I've ever got Lubion is £7 per vial which is usually £14 a day depending on dose. I can't remember how much PIO is but much cheaper. If you are doing your injections yourself, you may need to go into your thigh (although if anyone can self-inject into their buttock, it's probably you!).

Hi everyone, sorry I've not kept up to date with all the messages. I hope everyone is OK.
No sign of af yet, but I've had the worst stomach pains, my tummy is really bloated. I haven't eaten anything since lunchtime as I'm in so much discomfort 😕 I'm hoping my period will be here tomorrow. Scaring myself that it's something bad. I've had a peppermint tea, buscopan and defatine and it's done nothing. Wondering if it's bad pms?

Hi. I hope you don’t mind me joining the thread. I had a vaginal swab test done and Invivo analysed it. I have high levels of gardnerella vaginalis and a moderate level of Atopobium vaginae.

I’m preparing for a transfer but now having found this out my transfer must be delayed. Has anyone had success with lowering these levels? My nutritionist has put together a plan but what antibiotics have people taken for similar infections and for how long?

My fsh is also high now so feel like time is against me.

Thanks

@2021ivfagain
Both bacteria are associated with bacterial vaginosis.

Your best bet is to take the result to your gp and let them prescribe something.

Essentially you have some choices

• metronidazole 400mg/500mg 2-3 times a day for 7-14 days
• clindamycin vaginal cream for 7-14 days

Now metronidazole will spare lactobacillus (good bacteria) which you need. Clindamycin will wipe everything out so you'll need to recolonise before a transfer.

If you're delaying the FET I would personally do 14 days of both as this should give you the best chance of clearing it.

While taking the antibiotics use either a low dose antifungal pessary 100mg fluconazole or cream every other day, and the day inbetween use a vaginal probiotic.

You should follow the antibiotics course with 10 days of vaginal probiotics and daily balance activ pessaries.

@Gardenlady543

Thanks. I’m taking pessaries at present every night to get rid of infection using caneston for BV. I’m starting zumenon soon and they interact with metronidazole, so delaying this slightly. My issue is time. My fsh is high even with estrogen priming. I wanted to fit in a final retrieval but probably won’t be able to. The issue is there has been a delay getting my antibiotic on time. I still don’t have it. I went to clinic as it takes forever to speak to gp so went straight to IVF clinic but but there was a breakdown in communication!

My nutritionist has recommended I take caneston for BV and also the probiotic pessaries which prevent it coming back and probiotic pessaries as well as probiotic oral tablets and prebiotic to take. When I finish with antibiotics which I need to start after estrogen priming, my consultant said I can’t take probiotics at the same time as it will wipe them out. Is this true?

I’m in a bad situation as my levels are getting worse and I’m running out of time to do a frozen transfer with a modified natural FET protocol. I need to do this as I don’t want to risk an ERA which could set me back further and running out of time and money. A modified natural FET times it perfectly.

My nutritionist has advised I take probiotics for preventing infections orally (specific ones for vaginal health) for a minimum of 90 days. They are safe in pregnancy.

Time is a major issue for me now. Also is bio natural yoghurt (plain) with lactobacillus good to take every day? Does metronidazole antibiotic wipe it out as you are building up supply of more lactobacillus? Thanks

@2021ivfagain I personally wouldn't do a retrieval when there is dysbiotic bacteria in the vagina, they will be using a needle to go through the vaginal wall to access the ovaries.

I would take a course of antibiotics and then do the retrieval the following month.

Metronidazole spares lactobacillus, clindamycin doesn't.

Eating a diet rich in probiotic food is always a good idea, but it probably won't make much difference to the gynae microbiome.

Hi all, I just wanted to message in and say I’m still here lurking. I keep hoping I can post to say congrats on successful transfers but seeing how you are all having such a tough time I just wanted to post and say I am really rooting for you all and sending good thoughts.

@Gardenlady543 I am sorry for all your complications that have come up. Really hoping your November FET will be successful. You are admirable to keep giving your time to others here when you’ve so much on your own plate. You are a true example of women supporting women. Wishing you the very best of luck with your surgery. I hope it goes well and your recovery isn’t too bad.

@Janefx40 I’m so sorry to hear your FET didn’t work. Really hope you get to do your next FET soon and that it is successful for you. Will be keeping my fingers crossed.

@seven201 sorry to hear about your miscarriage. I hope you are doing ok and looking after yourself.

@VenusStarr also sorry to hear that you are having such a tough time. I hope AF arrives today for you and that the bloating goes away.

take care of yourselves guys. This is a rough time for the thread. I will keep checking in hoping for better news. Sending you all much love.

@Gardenlady543

Thanks. My consultant said the microbiome swab is a marketing tool! He’s not very supportive of it. My time is limited. I’m thinking I might not do a final retrieval and save the money on a frozen transfer but time is of the essence. My fsh is very high even with estrogen priming but I have been extremely stressed. I believe time is running out for me even though I responded really well last time.

I’m lowering fsh anyway artificially and through acupuncture to get my body in a better place. I’m worried about periods stopping completely and not being able to transfer what I already have.

My consultant has agreed for me to do a frozen modified FET with stimulation to thicken the lining but no estrogen priming.

Anyway I’m seriously thinking of not doing a last freeze all now. My plan is to continue with pessaries to treat BV and continue with probiotic for vaginal health. Then when estrogen priming is completed, take antibiotic for one week. I’ve only been prescribed one week.

With antibiotic will it kill any probiotic I take? Do I have to space them out? Thanks

Hi all. Just catching up.

@Janefx40 it's a really tricky decision. Do you want to share what your lining was this time? For what it's worth mine last cycle was 7.6mm and I was pregnant with that and CRP don't think the miscarriage is linked to that being on the lower end.

@thislittlebird I hope you managed to catch some in the end. I don't think adoption is for me. I'd consider it and egg donation, but my husband is firmly No for both, so I've not fully explored it. Although, we are very fortunate to already have one child, so it is different.

@birdbybird dr Shehata isn't a fan of pgta testing I think. I'd already done it by the time I'd seen him too.

@Gardenlady543 love the bingo one. The ones I hear chucked around far too much are 'why don't you go on a holiday, my neighbours, sisters, cousin did that then got pregnant?' or 'if you stop trying it will probably happen, that happen to my postmans, mums, niece twice removed'.

Your Gorgy appt sounds really good. A clear plan to follow. Sounds quite aggressive, but not in a negative way, in a covering all bases way.

@Yuliaaa sorry your hols is over. Let's all be chip stealing sea gulls!

@patientpatient 2014! Blimey, you are a warrior for still going. Yes, I'd push for era/Emma/Alice or the fetylsis one. It might also be worth seeing and immune specialist such as prof Shehata at the CRP Clinic or dr Gorgy . Have you had full imaging to check there's nothing getting in the way (I had that diagnosed after far too many transfers)?

@2021ivfagain I can't give specific advice but I do think it's worth getting it fully fixed before doing any ivf. Waiting/delays are the worst, I know.

@Dochas12111 good to hear from you. How are you doing? How many weeks? I agree, garden is amazing for spending so much time helping us all. If it weren't for her and cream suggesting seeing dr lower, I wouldn't have got as far as I have.

No news from me. My dr s appt is next week. Frustrating at wasting a month, especially when you're supposedly more fertile after a mc.

I've managed to get a follow-up with my consultant this coming Tuesday.
I have stopped my progesterone today as OTD and it's a BFN.
I should start my period therefore tomorrow.
Question: if I want my ERA/ EMMA/ALICE this month - what day of my cycle would I need to start meds?
Just wondering if I should get in touch with my clinic today to get a prescription for the mock cycle.

@seven201

@patientpatient 2014! Blimey, you are a warrior for still going. Yes, I'd push for era/Emma/Alice or the fetylsis one. It might also be worth seeing and immune specialist such as prof Shehata at the CRP Clinic or dr Gorgy . Have you had full imaging to check there's nothing getting in the way (I had that diagnosed after far too many transfers)?

I haven't seen Prof Snehata or Dr Gorgy. I'm with Yau Thum at the Lister. my understanding was that he has an interest in NK cells and immune issues... do you think the consultants you mentioned would do anything different?

@patientpatient it's the same drugs as a normal
Cycle. At my clinic that would mean starting estrogen (tablets and patches) plus viagra from
Cd2. I'd call them up and ask in case they will let you do it this cycle. Sorry to hear it's a bfn.

I guess it depends on how far your clinic go. At CRP my treatment is prednisolone, clexane, aspirin (all pretty standard at many clinics) but also intralipids, humira/adimulumab (just a one off treatment). I might be put on hydroxy next time. I have no knowledge about Yau Thum, so don't know if he's on the milder side or not.

@patientpatient how have you found Yau Thum? I'll likely be with the Lister soon, I'm not sure whether to stick with the consultant I'd seen before my NHS round started or to move to another one.

@seven201 I caught some but I wish I'd waited a few hours, worried I made too much bodily contact trying to collect such a tiny amount. I'd consider egg/sperm donation but I'll be honest and say I really just want it to work with our own embryos. It's a lot to get my head round that it might not.

@Gardenlady543 remind me what your surgery is for? Your Gorgy plan sounds very thorough, which is great. Loving the bingo card!

I have my follow up on august 23rd, so that's something to work towards.

Hi everyone. The thread has got really busy!

Thank you @Dochas12111 I hope you are well.

@thislittlebird fingers crossed you got what you needed for the test

@birdbybird Dr S told us not to pgta - but 4 of my miscarriages have been exactly the same and we tested 2 who were normal, so he doesn't think we're losing abnormal pregnancies. I am 39 soon though. But I have low amh too, so we'd need to embryo bank to test as well and I feel like we're coming to the end of this soon...

Good to hear from you @seven201 I hope you're doing ok and you get some direction from Dr S next week.

I'm sorry @patientpatient I'd definitely look into further tests ❤️ I did the endometrio tests and mimicked my FET, including my immune meds.

Hope you're OK @Janefx40

Cycle day 1 for me. The extreme bloating must've been hormonal. It started very suddenly and painfully this morning. Still feeling massively disconnected from this. I'm booked in for my first lining scan next week and seeing my ivf doctor, so if I'm not responding to estrogen he said I could have patches added. Feel like I'm just going through the motions at the moment 😕 maybe next week will feel better.

Lots of love all ❤️