ERA/EMMA/ALICE Testing Thread 3

[Janefx40]

Hello all,

This is a continuation of the ERA/EMMA/ALICE Testing thread.

New posters are welcome. On here you will find a group of women who are either doing these tests or have done them already and are further on the journey

This is the friendliest and most supportive group so feel free to join and post

Xxx

@Dochas1211 I'm taking probiotics everyday and drinking a probiotic a day, but still worried there will be more bad bacteria, mainly because I don't think my gut health is good! It's good that there was an improvement for you with the antibiotics and probiotics though, that's reassuring. What's a PIO?

@Janefx40 did you have your embryos collected last year? That's amazing to have the 2 euploids! Do they prescribe you probiotics or tell you to get some of your own? Also, what is the NK bloods? What does that tell you?

@AdrianeMole so sorry to hear what you have been through. I was almost thinking that euploid embryos is all you need but am finding out there is a hell of a lot more to this! It's hard enough just to get the euploids then add everything else to the mix and it's a minefield! Hope your appointment at the clinic comes soon enough.

@seven201 they never checked my progesterone level on that last transfer but I presume hopefully they will check it with all the tests. It's so hard to know also what is a good probiotic, there are so many out there and it's so confusing!

@Gardenlady543 I know! It's such a massive change! He said that my follicles are just super stubborn and had to have the max dose of meds. It also didn't help that the nhs had passed me onto them with pcos after 6 months of medication not working, but during my first cycle they said I didn't look like I had pcos but had endometriosis! But apparently not thick enough to do anything about and if they started messing it may ruin my ivf chances.
Would you just ask them about a saline scan in the next appointment? What sort of thing will that show up?

@BerryBright

Pros of EMMA ALICE

• The biopsy is taken directly from the uterus so there is less risk of vaginal contamination.
• I got a percentage breakdown from the EMMA ALICE, with fetilysis I just got what was high, low and normal.

Pros of fertilysis menstrual fluid test

• Cheaper (around £500, ERA EMMA ALICE is about £1500)
• Quicker (EMMA ALICE is usually done on a medicated mock FET, so that's 3 months out of treatment- cycle off, cycle of treatment and cycle while waiting for results.)
• Free consultations with the doctor who can go through the result with you
• Treatment plan is more in-depth, when I spoke to the doctor before I had the third analysis he said if it's still 0% lactobacillus I can go out to Greece and he'll put antibiotics into my uterus.

Overall I think if you want the cheapest way of knowing if the microbiome is an issue, go for fertilysis. If there is a problem and you want to repeat a test after treatment then you could do the ERA EMMA ALICE, that way you'll get some information on receptivity at the same time. You could always do it the other way round, ERA EMMA ALICE first, but my ERAs may be useless since both times it was done when I had a really bad microbiome and the bacteria present in the uterus can affect the receptivity.

@Coops0406 please ignore my euploid miscarriages - I think there is definitely something wrong with me physically not the embryos. Thankfully miscarriage of euploid embryos is rare. My friend who had pgs had babies each transfer

@Coops0406 PIO is progesterone in oil. I would insist they check your progesterone pre any transfer going forward.

Re probiotics - are you taking a vaginal one like Canesflor? The oral ones will only do so much.

@Coops0406

You will need an oral probiotic with the strains that have the most evidence of improving the gynaecological microbiome, they are lactobacillus rhamnosus, gr-1 and lactobacillus reuteri, rc-14. I take femodophilus and optibac probiotic for women, both have these strains in. There is a company called florafemme which do an oral probiotic with a lot of strains in, but you'll need to order it from the USA.

Gosh this sounds really confusing, endometriosis and PCOS? Are either of these confirmed. To meet PCOS diagnostic criteria you generally need 2 out of 3 of:

• Clinical Hyperandrogenism
• Oligomenorrhea (Less Than 6-9 Menses per Year) or Oligo-Ovulation
• Polycystic Ovaries on Ultrasound (>= 12 Antral Follicles in One Ovary or Ovarian Volume >= 10 cm3)

What about endometriosis have you had a lap?

A saline scan or hysteroscopy can pick up structural abnormalities that an ultrasound may miss like adhesions.

@Coops0406 I had my embryos collected June-August last year (2021). The euploids were from July and August.

I just took canesflor which is a vaginal probiotic that you can buy over the counter because my micro flora wasn't too bad.

NK stands for natural killer cells. I had my immune system bloods tested including NK cells although they also test others. To be honest I've been at clinics that know what they are doing so I've just done what they've suggested and am no expert on it. My immune system is slightly over active according to my blood work but normal by uterine biopsy so they will treat me but cautiously. My previous clinic didn't do uterine biopsies and I had steroids and IVIG for the immunes but I was always slightly skeptical about whether I needed it. I've seen women who have had multiple losses for whom it had clearly helped but was never sure that it was right for me so am happy to be at a clinic now that treats but more cautiously x

@AdrianeMole I'm hoping it is rare but until you're in it you don't realise just how hard it is to get pregnant!

@Dochas1211 no vaginal ones, just the tablets at the moment. Will pop a pic on of what I've got. I definitely will re: the progesterone

@Gardenlady543 I've been going to gynae on and off for years to "get me in the system" as I've always known I would struggle. My periods have always been super irregular, painful with sickness and diarrhoea, and when i finally went round the houses to gynae and had an internal scan, with my AMH of 28 at my age and what the scan looked like they diagnosed polycycstic ovaries...I was put on clomid. Then in the ivf scan during stims the nurse asked if anyone had mentioned endometriosis to me, which was a no. After my failed round and then a review meeting with a consultant, he said that my ovaries didn't actually appear polycycstic but I have endometriosis! But they wouldn't do anything about it as they said it has to be at least 3cm thick to do anything and mine is just under, so would do more damage trying to do anything apparently.
So I'm just totally confused with it all to be honest, not sure how they can get these things so wrong but here we are!

@Janefx40 I've heard someone mention NK cells before but didn't really know what it was about...is this one of the potential link to miscarriage? Better you feel comfortable and are treated cautiously...it's so much better when you feel things are being looked at individually rather than a one cap fits all!

Does anyone have any thoughts on whether these probiotics may be any use? They have the Rhamnosus and Reuteri that you mentioned @Gardenlady543 and made in the UK

I have been quaffing kefir as I read a and just seen that it contains lactobacillus rhamnosus, gr-1 and lactobacillus reuteri.
I just tried reading some of the previous thread to get some background on you lovely ladies and I saw @Gardenlady543 you are also with Mr Trew. I like him, he put up with my interrogating emails about pgs testing. I feel like I've messed with their stats now by being so infertile

I think they sound like the right probiotics @Coops0406.

My clinic were saying 5% miscarriage rate for Euploid embryos once a clinic pregnancy is confirmed by early scan. I have total screwed the stats.

@Coops0406 I think the ones with the most evidence are specific strains, the difficulty is finding something that you take orally and there being a good amount that reaches the uterus, hence why vaginal probiotics are the best route for replenishing. There are lots of benefits to probiotics and that looks like a good one though so I'd keep taking it. You could always get another with the proven strains in it.

That's a really interesting history, I would get properly checked out for endometriosis if I was you. I'm not sure what they saw on the ultrasound or what they mean by 3cm, but the fact they could see anything is enough to warrant further investigations in my opinion anyway.

@AdrianeMole are you under Mr Trew for IVF ? I just saw him for suspected Ashermans, he's really nice and was able to give an opinion when I emailed the clinic. You know I use water kefir to make homemade vegan cheese, Mr Trew was so shocked when I told him my EMMA ALICE result. I am like some kind of fermenting queen, I have a recipe book on fermenting foods I even went on a course called go fermental!

So today’s interesting news is that we repeated my husband’s sperm analysis, he had good results on the first test mid 2020 and the sperm did it’s job on collection day but that was over a year ago now. I had him give up alcohol completely (he wasn’t a big drinker he just liked a beer once a week), I also made him give up caffeine and take vitamin C and a probiotics.

He has 355 million sperm in the ejaculate and 127 million sperm per ml. These are crazy numbers! It was 19 million per ml the first time! There is still some aggregation which is annoying, but hopefully processing the sperm will help with this. Interestingly his pH is 8.2, so no wonder he throws my bacteria off!

@Gardenlady543 I went to him for IVF on recommendation and he sent me to Boston Place his private clinic. So you end up having whoever is on duty there who does the transfer etc but they are all really nice.
God that is so annoying about the fermented food and biopsy.
I saw this trial is happening which is more from the miscarriage side but seems like there is this formula Lactin V that looks good but not approved or available. but made me especially curious about crispatus vaginally.
www.tommys.org/our-research/our-research-projects/miscarriage-research/vaginal-bacteria-and-risk-miscarriage

Whoa that is some super sperm.
Also he loves you a lot to be not even drinking coffee, my DP could never do that!
Mr Trew actually swas o annoying when we were doing egg collections saying alcohol was fine for the man. Anecdotally though our last round which was the only one when DP didn't drink was the best.

@AdrianeMole I honestly think that giving up coffee and beer is the least a man can do when they've seen what we go though. When I got the results I thought they were worse I though he had 127,000 sperm per ml because it was so different from the last result and my DH said "see it's worse than the first result when I was allowed coffee and beer" omg after we found out the actual result and how it supported all the stuff I'd told him, now he has to keep going with it!!

Thanks for the link, I haven't heard of the test they're doing, it interesting they're sticking with just vaginal microbiome investigation. The medication they are using is this one: oselinc.com/clinical-pipeline/
It says it's under Investigational New Drug Application. So not commercially available. The only way to get it is to get in a trial, but then you could get a placebo. The difficult thing at this point is, these treatments in the pipeline are going to be no use to us. We have such a short timeline for things to workout. :(

Yes I think I'd rather experiment with the commercially availably suppositories than get a placebo, but I would worry that they aren't proven or very strong.
Ha love that for a short moment there he thought he should be drinking loads more coffee and beer!

@AdrianeMole lol yes for a minute he has a beer free pass!

Try ordering florafemme from the USA for when you want to use them. They told me they won't be accepting international orders for much longer. There is 72 billion bacteria from 11 different strains, it's expensive but worth a try:
florafemme.com

@AdrianeMole I took a probiotic vaginally that is marketed as an oral probiotic on the advice of a nutritionist who specialises in fertility and who did a vaginal microbiome test for me. It contained crispatus which she said was the key one. It's called Invivo Bio.Me Femme V and is available on internet. She said to take one orally and one vaginally, she said something about an applicator from Amazon but I didn't bother with that.

As in one each way per day, not just once!

The vaginal microbiome test I did was a step down again from the menstrual fluid one @Gardenlady543 has done in that it was just a vaginal swab. They think it's similar to the uterine environment. The test was about half the price of the menstrual fluid test. It was called vaginally ecogolix. I think what Garden said about doing a cheaper test first before forming out for an era etc makes a lot of sense. You don't want an era Emma Alice finding a whole load of problems as then you have to fix them and get retested which would set you back about 6 months even if the second test came back good. If you can do a bit of a diy fix and then if you're still worried and do an era Emma Alice you would hope it would just be a tweak after that. Probiotics can't really do you much harm as far as I know.

In my case I just went off and did this without my gynae, as she didn't believe in era anyway but I had a hunch something was wrong. Following the results I took 2 antibiotics, metronidazole and doxycycline, then did a course of Symprove which is a probiotic drink, and took canesflor vaginally, optibac orally and the one I just mentioned orally and vaginally. My next transfer did work but could have been coincidence. I like the fact that I had used the time to try to fix a variable that couldn't have too much downside, and the whole thing including the drugs and probiotics would have been under £500 and took around a month in total.

Thank you so much @whatcangowrong! That's really useful.

My PCR yesterday was negative so hopefully we are on for this FET. I did a test as feeling pretty rough with a cold, headache, aches etc. Have to do another one next week for the clinic so could still have it/get it but wanted to check before I started scans and meds properly.

@Janefx40 that’s great it’s negative and all can go ahead. Mine was also negative and I’ve similar symptoms to you so there must be a bad cold doing the rounds too.

Do you work from home? I hope you can rest up in advance of FET and get over the cold. I got it on New Year’s Day and at the tail end of it now but I’ve barely left the house. Hopefully you’ll be well recovered by day of transfer.

When do you start the meds/scans?

Exciting @Janefx40 ! Are you feeling good, positive, etc? X

@Dochas1211 ah so pleased that yours was negative too! That must be a relief.

@whatcangowrong I'm so focused on these PCR tests that tbh I've not really thought about the actual FET! I'm still nervous for next week's PCR - although I can isolate from now but there is still a change I am incubating Covid. I'm only isolating for 2 weeks but it's turned out to be the most sociable 2 weeks ever. DD has been invited to 2 parties and our next door neighbours are having the funnest party ever! So my whole brain has been focused on all of that.

Terrified really though - I've heard so few people get positives from their first euploid - I know I'm on groups with complex cases but it still feels pretty hopeless. Plus what if they don't defrost and we've done all of this work for nothing?!! Lots running around my head and none of it positive!

@Janefx40 don't worry - whenever I feel sure it's going to work, it doesn't. And when I think it's hopeless, it works. By that measure you have a good chance!! The fact theyre euploid is great and makes it more than possible!