ERA/ALICE/EMMA testing thread 2

[seven201]

Link to the old thread
https://www.mumsnet.com/Talk/infertility/4187520-era-testing-after-multiple-implantation-failures-anyone-had-it-done?msgid=110302437&utmsource=mentions&utmmmedium=email&utmcampaign=2020-10-19&utmmterm=You+have+been+mentioned+in+a+post&rei=438192#110302437

Welcome to the new thread. Anyone welcome.

Gosh @VenusStarr that's a lot! But will be worth it if they're doing what they're meant to. That's the next step for me but I think I will see if transferring a tested embryo does the trick first (if I have any, if not that might also explain things)

Maybe it's a good sign that this one feels different @VenusStarr

AF arrived yesterday, although it's a very weird period, a lot of brown and very painful. Periods really are the shittest when ttc. I am on oral viagra twice a day for 7 days and it's giving me a headache. First scan is a week today. I have my appointment with Prof Brosens on Tuesday.

@VenusStarr are you with ARGC? I hear they throw the kitchen sink at things! Hope you’re getting on ok and looking forward to a relaxing weekend.

I’m off to London on Sunday (I live in ROI). Transfer is Tuesday so I’ll work from the hotel on Monday and likely take Tuesday-Thursday off on sick leave. I have to have transfer under sedation so it’s a day procedure for me. I had a day or two of being zen now I’m back to being anxious.

I’m sorry to hear about your sister being unwell @seven201 hope you are coping ok on top of all the IVF stresses.

@Gardenlady543 hope your headache eases soon. What is the appointment to discuss ? Is he giving you advice on your FET protocol?

@whatcangowrong what’s your expected transfer date?

@Dochas121 just had lining scan and up to 9ish so it's gonna be a week Monday. Since you're a non tester and I'm a complete lunatic who can't stay away from the FRERs, we will probably be testing around the same time 😂

That sounds great about the lining @whatcangowrong and yes correct on the testing

Although as my clinic is in London I’ll be testing at a satellite clinic here at home and apparently they only do HCG tests in a nearby early pregnancy unit on Wednesdays so if I transfer on Tuesday the following Wednesday would be 8 dp 5dt - is that too early to test does anyone know to get a proper result? I’ve never done a FET before

My ivf clinic is Create @Dochas121 but my recurrent miscarriage specialist is Dr Shehata, so he wrote my FET protocol and luckily my clinic were OK with it.
Had a panic this morning as I was still taking vitamin E and I don't think I'm supposed to and scared myself. I should've stopped at transfer. There's bugger all I can do though, so just stopped it and praying it hasn't done anything 😢 read conflicting things. So have banned myself from Google.

Good news on your lining @whatcangowrong when are you starting your progesterone?

Thank you @Gardenlady543 🙏 I'm sorry af arrived but glad you can get started now. Horrible that the viagra gives you headaches, I hope they ease. Will be interesting what Professor B says on Tuesday. Are you having anything like clexane or aspirin as part of your protocol?

I had such a busy day yesterday but thankfully forced myself to sleep with an eye mask and classical music. Did wake about 3.30 but eventually managed to drop back off.

@Dochas121 I think a blood test prob would pick it up at 8dp5dt but I wonder if they will make you wait a bit longer as it does sound rather early and also probably wouldn't be conclusive, particularly if you have had a trigger shot which I usually do with a FET. It seems to me like part of making you wait is to avoid false positives either due to trigger or a very brief implantation. I've got my hopes up a few times testing early but I never learn. That said, my son came up at 7dp5dt loud and clear on a FRER so I always know I can get a result if there's one to see.

@VenusStarr I might pick your brains about create at some point. Intrigued to know more about how different their approach is and egg quality etc. Which of their clinics are you at?

@Gardenlady543 hope you feel better soon. I've got a banging headache too, think just from not eating breakfast as been rushing around. Or maybe from estradiol I guess.

Any other transfers coming up?

@Dochas121 I think 8dp5dt is a bit early although I think if I had it done then mine may have shown up? I guess it depends when they implant. I have read FETs do implant later but not sure how accurate that is. Frer are very sensitive though, in my chemical I had solid lines but my hcg was only 14 (actually showed up on a 25miu test too). But I'm glad I've avoided the dreaded lines this time... It was hard waiting for the blood test but I'm glad I did.

Yes that's OK @whatcangowrong :) I'm with Birmingham. I like them.

The appointment is to discuss the NK cell results, it won’t have any impact on my FET I don’t think. I am keen to hear his opinion on if my results mean anything and if there are treatments for the future that he would recommend.

We expected my NK cells to be high, as that’s what’s associated with recurrent implantation failure. He described it as my body overselecting embryos, so no embryo is ever good enough. Steroids and intralipids are used to bring the numbers down in this case.

However my understanding is that when NK cells are low this is a problem as well, Uterine NK cells sit close to spiral arteries and aid the vascular changes seen in early pregnancy. But I can’t find any relationship between low NK cells and implantation failure, it’s associated with recurrent miscarriage.

@VenusStarr Sorry to hear about the sleep issue, hope you get some good rest over the weekend. My protocol already had aspirin and heparin in it, and this time we’ve added in viagra as well. Aside from that it’s just oestradiol and progesterone.

@whatcangowrong and @Dochas121 exciting times for you two! Not long until transfer day for the both of you.

@seven201 just read your longer update. Sorry to hear your sister is not well and hope that she is winning the fight. IVF/infertility isn't ideal but that must be awful too.

Glad that you are feeling positive at the moment though! What are your next steps?

Am starting to think that my recurrent implantation failures are immune related but I can find very little on it in relation to secondary infertility. (I had primary infertility as well but managed to overcome that with ivf). Snippets I do find talk about how a first pregnancy can prime the body to attack invaders in future but I probably need to go and see a specialist.

My doctor (who I think in general is great) is just not a buyer of the immunes side of things. She doesn't really believe in the whole ERA EMMA business either. I want to persuade her that aspirin and clexane might not do anything much to help but might not do any harm? I have a whole load of clexane left over from my c section and tempted to just self prescribe (although that also sounds a bit crazy so I probably won't!). I won't get her onboard with steroids and intralipids though, will have to change doctors if it's still not working and I become more convinced in my own mind that immunes are required. A friend at ARGC recently told me that she is on the whole works there as a just in case...

@Gardenlady543 do you know when you might be able to try another transfer? I think you have lots of tested embryos right?

Hi Ladies. Wow I have missed lots of chat!

@VenusStarr glad you got back to sleep last night. I'm sure Vitamin E won't have been a problem.

@Dochas121 you could do bloods on 8dp5dt. It is the equivalent of 13 days post ovulation. The numbers would be pretty low and I'm not sure you'd be reassured so you might want to wait. How frustrating that they only test on Wednesdays. It makes no sense because if someone had a suspected ectopic you would need to do a repeat test 2 days later - you couldn't wait a week!!! Do you have a Medichecks equivalent in ROI?

@Gardenlady543 good to hear your follow up is so soon. It will be good to hear what he has to say. Btw I heard a podcast the other day all about vaginal probiotics. Thought you might be interested. Will find you the link when I get a minute.

@whatcangowrong good news on the scan. Lining sounds good.

@seven201 I'm so sorry your sister is unwell. Glad you can be with her. Life does pour down on us sometimes, doesn't it? X

I'm feeling really frustrated as just found out my clinic's final Day 3 baseline scan is 29th Nov meaning day 1 has to be 27th Nov and transfer around 15th. They said they were only closed 25/26th Dec so I can't understand why I can't have a transfer 21/22nd if they are open.

Feeling so fed up because I can't make that date unless I stay on noresthisterone for 3 weeks but I don't think that would be very good for my body.

I know I may need treatment from era, NK results anyway but I'm just so tired of waiting. It basically means our transfer cycle will start 30th Dec.

Two of our close friends are now pregnant with number 2 and I just feel so desperate to join them. Time is ticking on. DD is getting older, I'll be 45 soon. I know it's just a month but it feels like a lifetime to me

@whatcangowrong I like your plan of using your two untested embryos while you wait for the pgta results. How would you fit in two potential transfers before Xmas? Does your clinic not require a cycle off between goes? I hope you get your holiday. Excellent you have your transfer date now. That's interesting about ARGC, my clinic (care) are pretty anti immune things too. If this transfer doesn't work I'm going to have the NK blood test. I asked if I can have steroids anyway and they say they're not allowed during covid unless tests show it's needed. I am on clexane and aspirin though. Is your clexane in date?

@Gardenlady543 sorry your period is here. Viagra gives me bad headaches too but it does get better after a few days for me. I'm glad you have your professor appointment this week. I hope he is able to provide some good advice as to what it all means.

my vaginal ph is 5.0, so the lower end of abnormal. Do i leave it as is or get some balance activ?

@Dochas121 ooh, your transfer is really soon now! So you're going to use sick leave instead of annual leave? I don't blame you!

@VenusStarr I wouldn't worry about the vitamin e. I'm glad you had a better sleep last night.

My sister is doing alright thanks. She's had the shittest year ever. Her husband died of a heart attack in February and then she found a lump. She's had a single masectomy, chemo and is starting radiotherapy in December. She has two primary aged kids who are struggling with seeing their Dad die in such an awful way, but she battles on. I have no clue how she does it. She had her own infertility battles so she's still really kind and listens to my complaints about it all, despite going through all that she is.

I'm waiting for my period before November transfer. I have a baseline scan booked for 5th so I'm hoping my period arrives tues-thurs next week otherwise all my appts (I have my 2 neupogen infusions booked in already too) will need shifting. Still waiting on my progesterone test results to see if I'm ovulating during normal cycles. Bit annoyed it did t arrive yesterday as it meant another evening spent with my bum propped up, legs in the air!

Sorry @seven201 I forgot to mention your sister as well, bless her. I hope she's doing ok in such a tough situation. And hope all your family is ok as well, how stressful for everyone involved ❤️

@whatcangowrong not many people believe in the immune theories, to date it is the least evidence based area of infertility treatment. I went to Coventry as there are two professors there that take a research based approach to it. My results will likely be included in future papers and I thought at the very least contributing to the evidence base would make it worth it.

The microflora has an ok evidence base to it. Yeah it could be better, however studies tend to show the same thing, that microflora is important. Also we're talking about treatment in the form of antibiotics and probiotics, ie not invasive and unlikely to result in harm.

The ERA can be a more touchy area, some studies show there is variability and repeat biopsy can show inconsistent results. I guess mine was kind of like that as the lab assured me the window they suggested would like result in a receptive result, but my repeat showed I was prereceptive at this timing. I guess I'm a bit confused with it, embryos tend to do well in the uterine environment, this is why day 3 embryos are transferred in if there is a risk they may not go on to become day 5 embryos, so surely the embryo can hang about for at least a bit for the endometrium to become responsive? I've also heard of people that have had 2 embryos transferred which are different ages (a day 5 and day 6) and both have implanted. I think the receptive window length may vary I think from a few hours up to 48 hours.

Aspirin and heparin have a pretty limited evidence base to them as well. Even with conditions like antiphospholipid syndrome. In my case it was recommended as I have a c4m2 mutation and 1 abnormally PAI gene. I know some clinics prescribe aspirin and heparin prophylactically so I was fine with adding it in. I wouldn't add it in without discussing with your specialist, firstly it needs to be at the right time, so I take aspirin until 2 days before the transfer and then heparin from the day of transfer. Also your medication may be the incorrect dose and it may be expired.

If your interested in these topics, this is the book I read https://www.amazon.co.uk/dp/B07M6ZF15F/ref=cmswwrcppapiglttSJFGBARZXSK7J43AVDJS?encoding=UTF8&psc=1 some parts are pretty heavy, but you can dip into relevant chapters and get a good idea of the evidence base.

I have 4 euploid embryos left at the moment, the transfer will probably be in just over 3 weeks. I guess I will then try and collect my thoughts when the outcome is known. I just worry that my microflora issues aren't fixable and if there is some unknown reason why embryos never implant in me that isn't related to this, then is there is any point in carrying on.

I've got a few answers at least although not what I wanted to hear. Of my 4 I just sent for testing, 3 abnormals and 1 mosaic 😢. It explains why it hasn't been working but obviously doesn't make me feel any better about it. I still have 2 untested to transfer but bad Caremaps scores so not feeling hopeful. I will step away from the immunes stuff now though as it seems more likely it's chromosomal in our case. Feel pretty gutted. Likely it'll be another cycle I suppose early December, assuming this transfer doesn't work. Ugh so over it.

@whatcangowrong oh gosh. I'm so sorry. I don't know much about mosaics. Is that one ok to transfer? Will you be able to have a consultation with one of the doctors to discuss everything soon? That must be such a shock. I've definitely read things about the least well scoring embryos ending up being the ones that worked, so it's definitely worth using those. So sorry

I took so long to write my last message that two other messages appeared as I was writing it!

Oh yes please @Janefx40 I’d love to listen to the podcast! I'm sorry about the clinic being annoying with dates. I honestly think that clinics in the UK are rubbish when it comes to opening times,closing on weekends/sundays and they all seem to have a Xmas holiday.

@seven201 that’s interesting about the pH, it’s probably the semen doing it, semen is alkaline you shouldn’t use the balance activ when semen is around and you want to conceive because the low pH it creates will kill the sperm. I’m attaching this extract from a review because I thought it summed things up in a funny way!

Oh dear @whatcangowrong so sorry to hear the PGT-A results, what is your plan, will you transfer the mosaic, what about a double of the 2 untested ones? My worst care map score embryo (5/10) is euploid!

Not sure @seven201 , they would make us have genetic counselling so I guess we would find out more. It was a 9 on care maps, my other two untested were much lower. Ugh I'm so fed up. I know I'm so lucky to have one ivf baby but this still sucks.

I’m sorry to hear this @whatcangowrong what age are you if you don’t mind me asking? It seems unexpected to have none genetically normal but it could be that the normals are the ones you are planning to transfer? I have read many anecdotes about people’s top grades blasts being abnormal and lower grandes normal.

Hope you are ok

@Gardenlady543 thanks for letting me know that about your 5. We have a 5,4 and 2 left untested:

Day 5 Early Blast 22 score 5
Day 6 Exp blast 22 score 4
Day 6 Hatching blast 22 score 2

The 5 is also only early blast which I think generally is worse. Would take a miracle for one of these to work when several untested 8s and 7s have failed and in light of these testing results. Don't know what we will do. My doctor has previously said she doesn't like transferring mosaics. On the plus side we will definitely be going on holiday as even if we were to do another collection we would be done with that before flying and would then send away for testing over Christmas.

About to turn 39 so quite old but not ancient I thought. Sending my previously reticent husband for more tests and getting him more on board too. We may have just run out of luck around 36 though, which wouldn't be that weird. I'm pissed off we didn't do a round straight away when I was a year younger than I am now, but we had embryos left over.

@whatcangowrong my 5/10 was a full blast 2,2. They do assisted hatching for Pgt-a it became a day 6 embryo because it was slow at hatching. Anyway it was euploid while my:

Hatching 1,1 10/10 - didn't work in my FET
Hatching 1,1 10/10 - didn't survive the thaw, who knows could have been aneuploid.
Expanding 1,2 10/10 - was my only aneuploid embryo

So what @Dochas121 says is right, quite often the highest graded embryos are the abnormal ones.

This is the problem when people don't test all the embryos, the sample size is so small, it doesn't help with determining whether the untested ones are euploid or not.

Oh I am sorry @whatcangowrong 😢 I'm sending you a big hug ❤️ that's really difficult news to hear. Do they say what the abnormalities are, or no further detail? I have heard that mosaics can correct themselves, but I understand that might not be helpful to hear right now. This is very hard, we're here with you xx

Oh @seven201 your poor sister and her children 😢 (and you with it being your family) what a shitty year for you all. 🤞 For ovulation / period arriving on time so you're all on track.

@Janefx40 that's quite restrictive by your clinic, it adds to the pressure doesn't it? 😔 Hopefully your af will work with the timings. With the nk cells, generally the treatment would be within your protocol, so hopefully that works out.