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.

@StillTrying10000 if you choose not to do the tests I do recommend doing the probiotic treatment anyway. For me the game changer has been getting a saline sonogram (and the surgery to correct what was found/ had never been spotted during surgery and hysteroscopy).

@Gardenlady543 yes it would be on a natural cycle, so I wouldn't lose a natural month trying. When are you sending off your mid-cycle sample and how long will the results take?

Hi Everyone,

I hope it's ok to post here. I have been following for quite some time and I can see that you guys have a wealth of knowledge on this topic so hoping you can help.

Some background: First FET resulted in BFN, 2nd FET BFP but MMC at 8 weeks. At that point my clinic recommended ERA, Emma and Alice which found that I had 50% gardnerella and 48% good bacteria. I took antibiotics and probiotics and redid the Emma and Alice in September. Result: 89% good bacteria and 10% of others. So we were thrilled with the big improvement. I did another FET (euploid) in November which has just ended in a chemical which I susupect is down to my lining again.

The question that I have is how easy is it for the microflora to change and how fast? My doctor told me it can change month to month, my clinic seem to think it's not that easy to change and the results that I got in Sep should have been the same when I did the FET 2 months later. How susceptable is it to sugar etc? Two weeks before my FET I had a wedding and I definitly ate more sugar than normal, I am worried this caused it to change and impacted my FET. Does anyone have any info on how easy it is to impact? I can't find this anywhere. I am just so confused about how to manage this because I am sure they will tell me to do another biopsy. (Sorry for the long message). Thanks so much, hope everyone is having a nice Saturday

Hi @Parisinthesummer the person that owns fertilysis has more knowledge on uterine microflora than anyone I've spoke to before. You can arrange a free consultation on the website. He told me that the microflora can change from lactobacillus dominant to dysbiotic bacteria within 2 days. I've had 2 biopsies as well and now I'm doing the menstrual fluid test through his company. It will be interesting for me to see the results as it's the lining from my unsuccessful euploid transfer that's being tested. I don't know how much sugar would have an impact, the main issue is the vaginally microflora changing, soap, menstrual fluid, semen, water all increase the pH and risk the microflora becoming dysbiotic.

@seven201 it says to do the vaginal swab 2-3 days before ovulation, my app doesn't think I'll ovulate until a week on Monday. I don't know if I should do it on Wednesday so it's in the post before the weekend. Once they have it it says 10 working days, but with Xmas and new year it could be in the new year :(

@Gardenlady543 I need your wisdom as I have just been a prize idiot!

I went to put a canesflor in but instead decided to do what I thought was an equivalent. Jarrow dophilus women vaginal probiotic. It's Im the same blister packaging and just had it in my head it is a vaginal one. It's not! It says on the side "do not use these enteric-coated capsules for direct vaginal insertion". Erm... too late and I tried to get it out but it just went higher. I wouldn't normally worry but my period is due in a couple of days so obviously don't want to fuck up a potential pregnancy. Should I worry or try harder to get it out?

It's this one

uk.iherb.com/pr/jarrow-formulas-jarro-dophilus-vaginal-probiotic-women-10-billion-30-capsules/72629#overview

So my quick googling is showing that's a coating to survive stomach acid so I assume that just means it will take a long time to absorb and hopefully not an issue/danger. Why am I such a plonker???

@Gardenlady543 sorry to not answer your other bit. I was too busy having a panic. Perhaps do some ovulation sticks just to see the darkness of the line to see if there's any hint of it being early. The sample would last ok over the Xmas break right? It's more of a concern over having to wait for results? If so, I'd do what the instructions say to the letter. Sorry!! You don't want to get an inconclusive or incorrect result. Although I admit I don't know how it all works.

The capsule is still there and I think undissolved. I can feel the end of the casing

@seven201 bear down and see if you can get it to come out and try and pick it out, ask your husband to help. I am sure it will be fine if you can't get it out. But it will probably sit in there for a while. I'm pretty sure I've seen women in the reviews say they put them up there as they get abdominal symptoms when taken orally. I am sure it will be fine, but like you said will take an age to dissolve so probably best to get it out.

Oh I'm sure it will be fine when I send it, would just be good to get it to the lab and get the result ASAP.

@Gardenlady543 thank you so much for taking the time to share that summary. It sounds promising that some people have had success as a result.
No I haven't had any internal checks at all, only ultrasound scans where there was no sign of scaring or PCOS. My miscarriages, even my 16 week loss all passed completely naturally without D&C so I didn't expect to have any scarring and I assume my tubes are fine as I did used to be able to get pregnant more easily when my ovarian reserve was higher. Do you think I should still be asking for the tests you've mentioned to check my womb? Thank you x

@StillTrying10000 I personally feel that everyone should have either a saline scan or HSG before IVF, ultrasounds don't pick up on many structural abnormalities. In some countries these investigations are routine, no idea why it isn't in the UK. I think the ERA is going to be of little value for you, you must have been receptive to implant. If you want to check your microflora, you could use the company I'm using that tests menstrual blood (www.fertilysis.com), it will take less time and is less invasive. With an EMMA ALICE you will need to have a medicated mock FET and a biopsy on would be the transfer day. So you effectively lose 3 cycles by the time you've done it, cycle off, EMMA cycle then another cycle off while awaiting the results.

@Gardenlady543 thank you for your advice too. If that test shows something does that company prescribe medication to treat it or do you take the results to your consultant for treatment? I did ask my consultant if they could give me probiotics and antibiotics as a precaution but they refused without the tests. My 16 week loss autopsy showed the baby had an infection in their body so I've always been concerned about infection but my consultant won't give me antibiotics until 8 weeks of pregnancy and I haven't been able to get that far again.

Hi @StillTrying10000 Sorry you find yourself here and for your losses. @Gardenlady543 is the expert on all these tests especially on the microflora. I'd agree that the ERA is pointless for you as you've implanted plenty and it only checks implantation window (not related to early miscarriages). I assume you've been treated for immunes since you talk about having tried everything. Let us know what you decide. I did all the tests for peace of mind but my situation is different - I'm older so the 2 embryos we have are the only ones we can make - hence double checking everything first.

@Gardenlady543 I wrote you a whole response but then it got lost and now the conversation has moved on but basically sorry about the PH. What a nightmare. Will be interested to hear what Fertilysis say though as they are clear experts. Hope they are useful.

@seven201 hope you can get your booster soon. Never understood why they didn't prioritise teachers - it would have reassured everyone at the very least

@Parisinthesummer I'm so sorry about your loss and your long journey. I doubt that one incidence of eating sugar could be the cause. I hope not anyway as I'm a sugar monster at the moment. I know @Gardenlady543 has already answered your question but welcome to this thread and hope the new year brings good things for you

Xxx

@Janefx40 thank you. Yes I'm being treated for NK cells. I'm on steroids, hydroxychloroquine, intralipid infusions, GSCF injections, Fragmin, aspirin, progesterone pessaries and injection's. I'm pretty convinced the EMMA and ALICE and the right thing to do now, I just hate the thought it will be such a long wait and they might want to test again.

@Janefx40 oh thanks for the message, I hate it when I lose messages. In fact I just lost this one several times! I normally dictate my messages now because I write so much hence the typos, so sorry about the typos guys!

@StillTrying10000 Well I would say that checking your microflora is essential in that case. I would still do the saline scan or HSG before your next transfer as well.

Both fertilysis and EMMA ALICE will tell you the amounts of various bacteria's in the sample. And both will also give you a treatment plan. The Emma Alice treatment plan is very basic, and I wasn't impressed at all because from my first sample I had a mix of bacteria so they advised a broad-spectrum antibiotic, however that didn't kill off gardnerella, which is an anaerobic bacteria, so it killed everything off except that, the gardnerslla then florished and after I had an unsuccessful transfer I had another biopsy and the gardnerella had taken over! This time the Emma Alice company told me to take seven days of metronidazole but I took things into my own hands. Somebody had shared the treatment plan from fertilysis and they had a very similar microflora to me so I just replicated what they did plus I added another antibiotic in.

In relation to where you get the antibiotics from, you can either take the treatment plan to your GP or give it to your fertility specialist. You can also order some antibiotics online through an online pharmacy. I've added the bacteria they check with fertilysis menstrual blood sample, I would go for the full panel which is what I've gone for. I've also added the treatment plan that the person shared with me that they were given. It is a lot more indepth than what you get from the EMMA Alice company. I also had the benefit of being able to speak with somebody, the person that runs fertilysis, they knew a lot about microflora. If you haven't decided which one to go with I would suggest that you book a free consultation through the website and see what they have to say. I thought he would try to sell me all the other test that they do, but he didn't he was just concerned with the microflora and advised about getting that test and told me he is there should I need him in the future eg if this third sample is really bad I have the opportunity to go over to Greece and pay for antibiotics to go straight into my uterus which he can arrange.

@Gardenlady543 did fertilysis give you an idea on how long it will take for the sample boxes to get to you? I'm on day 1 of my cycle now and am wondering if it would get here in time to test this cycle.
What's now putting me off EMMA and ALICE is the need to retest after treatment if something is found. It's a huge amount of money and time.

@StillTrying10000 I got the box pretty quickly, about a day or two after ordering. But you need to collect your sample within the first 12 hours of your period. Do you have a sterile pot? If so collect a few drops of period blood in it and then put it in the freezer. They say to keep it in the freezer until you send it off, but you could easily take it out, defrost it and pour it into their container when you get the kit.

They say they only need a few drops and to hold the sterile container in place and let a few drops come in, that didn't work for me due to my light periods so I used a menstrual cup instead and poured it into the container.

Just to add another option: I did this invivohealthcare.com/products/diagnostics/vaginal-ecologix/ my ivf gynae is pretty dead against era Emma Alice, or at least was for me. I had had a successful pregnancy implanted on normal progresterone timing.

You have to use a practitioner to do it through, I went through Melanie brown a nutritionist specialising in fertility who also gave me a programme for probiotics etc but who can't prescribe antibiotics.

What I ended up doing is going to the nhs gum clinic after I got the results and telling them that I had bv symptoms based on the relatively high gardnerella found. They gave me a course of metronidazole (although the swab they took there didn't show gardnerella incidentally). I then also got some doxycycline from Superdrug (can say at home chlamydia positive test) as read somewhere that this can zap a lot of vaginal nasties. So I kind of DIY treated myself in a general way I guess. I then basically mainlined probiotics but following Melanie brown's programme she did for me. Did a course of Symprove for gut, canesflor vaginally, and then I started optibac for women and also invivo bio femme v which contains crispatus which she had me take both vaginally and orally although they say they are for oral use (@seven201 not sure if you sorted your problem but maybe this is reassuring!)

My next transfer did work (for now) after repeated failures to that point. But it's equally likely I just finally found the euploid ones. It's very hard to tell in all of this with so many variables at any one time and such a huge dollop of luck required 😑

@Parisinthesummer sorry, I missed your post. I really wouldn't worry about the extra sugar at a wedding. It's so easy to overthink everything.

@Gardenlady543 thank you for your help. I did manage to get it out around mid morning and it was mostly in tact. Will try not to make the same mistake again but it's reassuring @whatcangowrong has to say about it.

@Dochas1211 when is the scan this week?

@whatcangowrong what's next for you? Wait until 12 week scan?

@Cream123 and @Janefx40 how are you?

Thank you @Gardenlady543 and @whatcangowrong I really appreciate all of these ideas x

@seven201 I have a scan next Friday as well, I think given it is currently twins she is doing a bit more with me, and I guess that is pre their Christmas closure. And then will have harmony test/scan sometime between Christmas and new year at around 10 weeks. I'm on holiday at the moment which is lovely and definitely helping the weeks tick by a bit quicker. Hence ungodly hour of this post. Up to 7.5 now but I am having a small amount of old brown spotting every day for the past week which is maybe slightly increased today :-/ Trying to stay relaxed which as you all know is easier said than done.

Hope those in an enforced treatment pause are at least enjoying some fun over Christmas!

This Friday my scan is (not xmas eve)! Time is going faster than I realised!

Attaching my results to show what was tested and then my plan as well for interest. I also received a written plan explaining each thing found and why it was bad, this ran to around 10 pages of narrative, and then also a load of zip files with studies etc. I think the files are attached in a funny order but you get the idea. I think someone below mentioned the need to retest - I guess that's also true of this test and any where you're intervening to try and solve problems. I haven't retested. Although these vaginal swab tests are only a proxy for what's going on in the endometrium, at least they don't require a biopsy and are a hell of a lot cheaper. I would do again in future I think.

Hi all, apologies I’ve missed quite a bit! I was visiting my sister and trying to stay off my phone!

@Gardenlady543 that’s great your AMH is looking good. Hopefully your FSH was a bit higher from all the meds and will go back in range soon. Can you do day 3 bloods at GP to check it again? The fertility sis sounds good. Far less invasive than multiple repeat Emma/Alice. Are you still planning for a natural FET next or what are your thoughts?

@seven201 glad your consultant agreed with what you said and it would be good to decrease the amount of medication. It is a tricky one to go natural when your ERA was medicated and window found. I’d probably stay medicated in that case. When are you hoping to do a FET? Hope you’re ok after your shock of the pessary. Stuff like that just tips you over the edge 🙈

@Janefx40 a natural cycle ERA is super unusual! I hadn’t even heard of it before you said despite all the researching. It’s a pity it’s not offered more. I would’ve preferred that as I’ve a regular normal cycle and the oestrogen gives me serious anxiety as I know it does for a few others. Did yours come back identifying yourself receptive window? Are you all set for FET end December?

@StillTrying10000 I would agree with the others if you’ve gotten pregnant you’ve found your receptive window so an ERA is not useful from that perspective and fertilitysis sounds good re finding out the shares of good and bad bacteria. I also heard that Serum in Athens do a menstrual postal test for ‘hidden c’ I know a girl who sent off to that and after the treatment her next transfer worked so that could be another option. You don’t need to be a patient with them. Have you had your progesterone levels monitored during 2WW? If you’re having an early miscarriage could this be something worth investigating? Have you also done testing for natural killer cells?

For me I don’t know why my transfer worked. I did the ERA/EMMA/ALICE and improved my good bacteria, found my implantation window, my progesterone was far too low so that was monitored every 4 days during TWW so that was also fixed and I did testing for natural killer cells and am on a low dose of steroids. I hadn’t looked at any of these before transfer so I don’t know if it was one in particular or the combination of them that made the difference.

I do think at this point it’s worth you doing further investigations. It’s expensive but not as expensive of needing another round of IVF. Do you have many frozen embryos left? I do think it’s worth looking internally too if you previously conceived naturally now can’t in case anything has happened after the miscarriage.

@Parisinthesummer I wouldn’t worry about sugar. I ate dreadfully in the run up to my FET and in the TWW. I was just so drained from it all I couldn’t motivate myself to eat properly or stay off sweets.

@whatcangowrong hope you’re having a lovely time on holiday! Good luck with scan on Friday.

I’ve a scan on Wednesday morning. Nerves are setting in again. The constant anxiety is tough.

@Dochas1211 I am still wanting to do a natural FET, but I don't know when. I haven't spoken to my specialist, I might book an appointment for late January but haven't done it yet.

I got a message from the clinic manager about the complaint I put through for what happened on transfer day. She called me and said that it was discussed with the nurse manager and medical director and they all agreed that communication was poor.

@Gardenlady543 I’m glad the clinic agreed they were in the wrong but it’s still so unfair you had to go through that. I had a few horrible interactions in my first clinic and I’m still angry about them. The clinics really need to do better. I think they forget the trauma we are all going through. I hope it’s made you feel better to get them to acknowledge your complaint.

That sounds good re natural FET. I do think it’s worth a go. Especially as you said you also react badly to oestrogen. My friend in the US said their first option is natural and only move to medicated after that. It seems to be the opposite here.