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

Hi all, I haven’t commented here in quite some time as I had another chemical pregnancy in December after my 3 rd transfer and didn’t cope very well. So I decided to take a complete break from the world of infertility! But really feel for everyone on here there is so much happening.

I’m back asking for more advice. I’ve now down 3 biopsies the 2nd showed I had 89% good bacteria and 10% chlostridium. The last one that I just did showed I now have 80% good bacteria and no other issues that need treating. I really feel this could be the reason for my losses. I’m wondering if it’s possible to get to 100% good bacteria? I was told to do 10 days of the vaginal probiotic and eat a yoghurt every day but I’m not sure if that’s enough. Thanks 🌸

@Parisinthesummer Oww I'm so sorry to hear that. My Lactobacillus is 93% (6.88% listed as 'Others') and I was told this is as good at it gets. 80% sounds pretty good but I'm no expert.

Meeting with Dr S yesterday went well. I'm going to be the Guinea Pig and try Tacrolimus. It was fun and games yesterday trying to get the prescription but it's not as bad £ as expected. £317 a month. The expensive things is the weekly £100 blood tests on top of this that I'll do until 16 weeks pregnancy. And of course the costs escalates if I don't conceive for a few months.
Scary thing is he won't let me transfer until he's comfortable with my blood test results so I just have to keep my fingers crossed for a May transfer and this is the miracle drug I've been looking for. The drug causes large weight gain as it impacts insulin and I'm staying on all my existing drugs including the Pred which makes me hungry so I'm worried about how big I might get

I'm pleased you have a plan in place @StillTrying10000 are you not doing the humira? I hope this is the medication combination you need 🙏 I think me, you and @Janefx40 might be doing May transfers. I hope we have some positive news 💕
I have put on weight since being on pred and despite being off it since my last pregnancy (coming up to 5 months), I haven't lost a lb. Really depressing.

I'm really sorry to hear that @Parisinthesummer ❤️ we've had a break too and I really think it's helped. Although I'm feeling anxious about going into treatment again.

Xx

@VenusStarr I didn't go for humeria. My two options were humeria or Tacrolimus. I wasn't optimistic about humeria as I don't have TNF and I feel I need something that is going to make a dramatic difference. He said he has a few women trying humeria at the moment and I thought I know :-).
I was worried I'd waste money and embryos on humeria and just end up back to trying Tacrolimus in a few months anyway. I'm so sick of all this now I'm going with the approach of throwing everything I can at this. I'm also likely to do a double embryo transfer. If it doesn't work on my first IVF attempt I'm not sure if I'll waste any more of my precious embryos on my body.
It will be so interesting to see if these different treatments work for any of us. If they do we'll all be queuing up for the drug that worked :-) Bring on May! xxx

Ha, you've just reminded me @StillTrying10000 when I saw him and he put me on metformin and I questioned it as I don't have pcos or diabetes, he said 'who have you been speaking to? 😂 Only the majority of your patients!

I think your approach seems sensible and the important thing is you're comfortable with it. I know we have a longer term plan, but the thought of back to back ivf and trying again is really tough. I hope your next transfer (and the rest of us who will be transferring), I hope it brings us our take home babies ❤️ xx

@VenusStarr the scan wasn't at my clinic I haven't told her about the immune stuff or this stuff. I feel like she already thought my situation was dire and now it's a lot worse. I have a scan next week I'm hoping if my lining is a bit thicker maybe they will see the fibroid position better, I'm hoping it was wrong and that they are in the muscle. I still only had the one in the muscle at the scan I had in February.

@Yuliaaa oh that's interesting about your lining, I was so sure my lining issues had been overcome but it was just the hypothyroidism it seems :( when I was deciding who to see for my thyroid I considered this place which specializes in endocrinology in fertility stuff, it might be worth you speaking with them? www.imperialreproductiveendocrinology.com

@Parisinthesummer anywhere between 80-100% lactobacillus should be fine. I would recommend in your next transfer cycle that you use a vaginal probiotic every day and do it until the first scan.

@StillTrying10000 I used to dose tacrolimus in the past and it does need regular blood tests, hopefully they will get you on the right dose quickly.

I spoke to the immune person yesterday, he said the complete Hla Dqalpha match is so rare that he has a very small number of people who have been found to have it, and he tests for it! He said he needs to do a literature search to put the right treatment plan together but thinks it would be: LIT with a mixture of donor and my husband's blood, that would need to be done 2-3 weeks before a transfer and will last for 4-6 months, if I get a positive test then it will need to be repeated, also G-CSF and likely steroids and intralipids. I obviously can't do any of it until I get the ok that my thyroid is stable, find out what's happening with these fibroids and get clarity on my lining. The hill to climb just keeps getting bigger and bigger.

I had a chat with a colleague today, turns out a few colleagues have had babies without me realising, they said I'll go get there baby to say hello, I almost started crying and said "no I can't deal with babies", that should be enough of a hint that I'm going through stuff. This stuff just comes up all the time.

@Gardenlady543 well done for saying no to the babies - important to have boundaries!! I really hope this fibroid isn't an issue. I wonder what causes a thin lining? Sounds like the LIT plan is clear anyway!

@StillTrying10000 sounds like a good plan to me. Fingers crossed for May.

@VenusStarr yes I'll be May IF the Humira works but not otherwise. We shall see.

@Parisinthesummer garden lady is the bacteria guru! Mine is about 70% but I've just been taking the vaginal probiotic.

Hello all. Sorry I've not been on this week. I find it a struggle to keep up with everyone's developments (gosh, we're a complex lot!) and not in the headspace to work it all out. I'm fine, just distracting myself for a bit I guess.

Sorry to hear about the new issues @Gardenlady543 . You really can't catch a break. Your strength is amazing. I hope your fibroid(s) are in a better place for the next scan.

@StillTrying10000 I'm glad you at least have a new plan. Sounds the right one to me. Keep on trucking!

@VenusStarr well done on the metformin. Ha about knowing all his patients! I've been gradually increasing mine and I've had a dodgy tummy, some slight light headed spells and also my sleep is mucked up! The sleep could just be me having a random bad sleep spell. I also did the first humira 1 1/2 weeks ago so could all be linked.

@Janefx40 how you doing? Cocktails sounds fun!

I really enjoyed listening to that podcast. Thank you! I don't have Spotify yet it let me listen. Going to make dh listen.

Sorry I'm not mentioning everyone, as I said, I'm struggling to keep up.

I had my ivf consultation on Monday and have since been waiting for the nurses to call to book me in.... Dr said maybe June which makes me think it may be July!!. At least I can try naturally in the meantime. Might do some clomid rounds.

Happy weekend everyone

This has been recommended to me but I'm not sure what the test entails. What do each of the ERA, Alice, Emma test for? How long is treatment?

@Conundrum12345 welcome. It's a biopsy of your uterine lining done at the time you would have an embryo transfer. It's done with a speculum and for me was a sharp period cramp pain. No sedation, just paracetamol.

The era tests to see if that is the exact right time for your body to accept an embryo - they'd tell you it's too early, just right or should be done sooner. Mine needs to be done 24th a sooner. The Alice and Emma (can't remember which is which) is to test for if you have any infections (would probably be treated with antibiotics) and the levels of different bacterias in your uterus (quite a few of us on this thread have had to take probiotics for this).

[quote seven201]@Conundrum12345 welcome. It's a biopsy of your uterine lining done at the time you would have an embryo transfer. It's done with a speculum and for me was a sharp period cramp pain. No sedation, just paracetamol.

The era tests to see if that is the exact right time for your body to accept an embryo - they'd tell you it's too early, just right or should be done sooner. Mine needs to be done 24th a sooner. The Alice and Emma (can't remember which is which) is to test for if you have any infections (would probably be treated with antibiotics) and the levels of different bacterias in your uterus (quite a few of us on this thread have had to take probiotics for this). [/quote]
Thank you. My doctor mentioned to me Alice and Emma but not the ERA as I had an infection post miscarriage last year and have had subsequent losses since.

I'll have to go to a different clinic so not sure if I should do the ERA too

I guess maybe the ERA is maybe more aimed at women who aren't falling pregnant (I'd had 4 failed transfers before I had the ERA). Personally, for me, the ERA, Alice, Emma I don't think have been the issue for me not conceiving (since had a big adhesion removed and recently immune issues discovered). I think quite a lot of us on here feel kind of similar. Although for some it could be 'the answer'.

Welcome @Conundrum12345 the EMMA and ALICE sound like they would be useful, one thing to mention though, they don't test for ureaplasma, this can cause miscarriages and you should arrange a test for this. My friend had 2 x EMMA ALICE and had a miscarriage, she then did the menstrual blood microbiome test through fertilysis and found out she had ureaplasma.

Specialist's opinions on the ERA vary, some say it's of no use, I think with implantation failure and chemical pregnancies it's worth trying.

Hello everyone, I am sorry I dont have time to catch up on everyones situation after such a long time but I wish success ands strength to all situations

@Violette22

The fertilysis test uses menstrual blood, I used a menstrual cup to collect some to try and isolate the endometrial lining coming out from the vagina, they recommend collecting in the first few hours of a period, so hopefully there shouldn't be too much contamination, I went with the advanced microbiome test, this also includes a vaginal swab. You collect the menstrual blood and put it in the freezer and then do the swab mid cycle, then arrange the courier to collect the box of your samples. You will get results which show the various bacteria with the amounts found in the vaginal sample and uterine sample.

1. I've attached my result, you don't get the overall percentage but I asked the lab doctor what percentage of lactobacillus I had and he said, "The percentage was up to 100% (79-100%)", anything above 80% should be fine. So if he reports the test as normal then it's likely that your microbiome is fine.

1. The report will tell you if you need antibiotics and suggest what antibiotics, they won't outline what dose or length of course, you can pay extra, I think about €100 and have a consultation where he will write a treatment plan (my friend did this), he provides an international prescription, you'll have to see what rules your country has for using this. My friend found it hard to find a pharmacy to accept this in England so took it to her GP who wrote another prescription identical to it.

1. I don't know the background of the owner of fetilysis and I don't know about medical qualifications in Greece. He seems to be experienced in the lab side of things. They can offer treatment there, he told me about coming over to Greece and having antibiotics put in my uterus if needed, I also just had a chat about immune treatments that they can offer. My microbiome situation was complicated and I felt he knew more about it than any other doctor I've spoken to.

If you're considering the immune testing then you could order some immune tests from fertilysis at the same time, I just did their immune panel, you will need to find somewhere to get your blood taken (you and your partner), two of the samples need to be centrifuged.

As I'd just mentioned something that came up for my friend is that she has ureaplasma which the EMMA ALICE didn't look for, this causes miscarriages, she just had one. The fertilysis test picked this up.

I know I sound like a rep for fertilysis, I'm not lol, I just found their tests cheaper than alternative ones.

As for this low biomass, I take it they mean there wasn't much bacteria present overall. Did you do the acid tablets and probiotics like I recommended? If you do the fetilysis test then you'll need a couple of weeks without using vaginal probiotics or the tests will pick up the ones you have put in.

Many, many thanks again @Gardenlady543 for your help, I knew I could trust you with this one

@Violette22 I had a couple of free consultations with them, I didn't feel pressured to buy anything. The first time we talked through my past EMMA ALICE results and he recommended the advanced menstrual microbiome test, which obviously he would because I'd had 2 x 0% lactobacillus results. He suggested waiting to find out the result of the FET I was doing at the time but I wanted the kit asap so I could test the withdrawal bleed, he was really nice and said order the test and if I get a positive pregnancy test he would refund it.

The second consultation I had actually already ordered the full immune panel, I wanted to ask him why it hasn't been dispatched, it turned out that the person that usually sends out the kits was off. Anyway we discussed his recommendations and he actually recommended cheaper individual tests rather than the full panel, but I'm glad I ordered the full panel. I was found to have a complete DQALPHA match with my husband, this is pretty bad, I'm not sure if it can be overcome but I paid for the consultation to discuss treatment and he said he'd advise what we can try. Likely LIT and then intralipids and steroids in a treatment cycle. My situation has got more complicated with a recent diagnosis of hypothyroidism, very thin lining and fibroids pushing into the uterus. It's all feeling pretty hopeless right now.

You don't need to travel for immune testing by the way, they send you a kit and you get the blood samples taken and centrifuged and send it back via the courtier the same day. I think he is a MD general practitioner and PhD from the documents I've seen.

I've booked in for Alice and Emma only for CD21

Can anyone advise if we should not ttc this month? I haven't ovulated and forgot to add my doctor!

@Conundrum12345 DON'T try to conceive, they are going to take a biopsy, this will be the uterine lining that is shed during menstruation, if you conceive then this can cause a miscarriage.

You can try next cycle though.

Hi everyone, sorry I dropped off for a while. I'm having a difficult time collecting my thoughts. Today is 3 years since my first loss and I thought I was ok, but I've had a stressful morning and I think it's just brought all the feelings up.
We had our FET planning meeting this morning. I think I feel OK about it all. But the consultant wants to scan me as he mentioned about scarring. But I don't think it's necessary, my periods are completely normal, good flow etc after the surgery. I've got a really busy week and just had to juggle a lot of things to do the scan. It's just reminded me I hate ivf and infertility admin. Anyway, got a baseline scan tomorrow morning. Nurse consult is on 21 April. Feels like this month is going to fly by.

How are you @Gardenlady543?

Hope everyone is is doing OK xx

Gosh that sounds stressful and upsetting @VenusStarr I'm sorry it's tough at the moment. I hope the scan goes well tomorrow.

I've got a thyroid blood test tomorrow and then repeating my ultrasound scan on Wednesday. I hate the admin of all this stuff as well. I hate how my life is on hold, I hate the impact on my body and the impact emotionally. I hate all of it :(

@Gardenlady543 @VenusStarr

Oh gosh, I feel the same. I hate it so much too. We are 3 years now trying. And 2 years since last pregnancy. Life is on hold. I can't even think about booking holidays or anything. Everything is kept open for what might happen ivf wise. Thanks for the honesty. More and more often I am getting down about the whole thing. It is helpful to hear it is not just me mishandling it. It truly is such a difficult tortuous journey. Thinking of you all. I hope there are some rainbows on the horizon. I turned 41 this week, which im finding very hard. X

@Gardenlady543 Thank you for the recommendation. Unfortunately I am not from the UK, but I'll seek for other opinions in my country. I am taking a break at the moment. I should be starting the treatment for the medicated FET in May. Meanwhile I am supposed to update some blood tests and to do scan my breasts ( which is horrifying because I am cysts all over and it is very painful). Like you said earlier, I hate everything about it, it seems like an endless journey.
My heart goes out to you all ladies struggling here. I can't help crying whenever I read your stories/updates. It is overwhelming and sad. I am so upset! 💔

@VenusStarr it's so so sad, I'm glad you're feeling okay about your plan, thinking of you xxx

Morning. Just back from my scan. Stupid traffic made me late and it was all rushed and stressful. But bad news. He thinks I have scarring following my miscarriage surgery. Right where they place the embryo. So I need a hysteroscopy before we can proceed. So no May FET 😕 he also said my lining was a bit crappy. Ugh.
Could really do with the universe giving us a break. I've contacted CRP to see if I can have a consultation with Mr Jan and hopefully can get in soon.
@StillTrying10000 I know you had to have yours early in your cycle, I'm impatiently waiting to hear back from them about when I can do it.

I'm waivering on our FET plan, I think I want to add the gcsf injections now. I am worried the hysteroscopy will negate the sitagliptin, so want to just give ourselves the best possible chance when we do eventually get to transfer our last little embryo.

How's everyone else? @Janefx40 @Littledream @Gardenlady543 @Yuliaaa @seven201 xx