ERA/EMMA/ALICE Testing thread 4

[Janefx40]

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

Oh yes, my CRP protocol is 7-10 days before transfer. Sorry, ignore what I wrote before!

Gosh I keep getting so far behind, that's great news about the positive @seven201 when are you going to do the repeat?

I have my appointment with Gorgy on Tuesday, not long to go!

How is everyone else?

Thank you @Gardenlady543. I'm glad you don't have to wait long until the Dr Gorgy appt.

I've done as @Janefx40 suggested (thank you Jane) and it's showing as 2-3 weeks so is 153+ so headed in the right direction! I'm going to attempt to not wee on any more sticks for a while.

I hope everyone has been enjoy the sunshine x

@seven201 oooooo yay!!! I really wanted to ask about the test all day but didn't think I should prompt you. So we know that the Hcg has at least doubled since Tuesday which has got to be good.

What's next then. Will you have a scan with CRP?

Aww thanks. I only did it on a whim this afternoon. So yes, it's doubled, so heading in the right direction. I've got a scan at CRP on tues 28th at 6+3. Feeling cautiously optimistic.

How are you today?

@seven201 😄

I'm fine thanks. Hot!! And so pleased all my big jobs are done and can finally relax. I had that race then some Ukraine stuff and then the job interview to tick off and now all done.

We're in Norfolk this weekend for a family birthday and then life feels a little easier!

Just about to take my last noresthisterone tonight so period should come Tuesday.

Oh also I spoke to my GP and she is going to sign me off after transfer for 2-3 weeks!!! So I don't have to waste annual leave!

Woweee 2-3 weeks!! That is superb news. I had my transfer on a Thursday in half term, then the extra bank hol. Honestly, it was so wonderful not having to be in a classroom the next morning. I felt so much less stressed and I just did exactly what I wanted. That is such a great idea! I'm glad you have a quieter time coming up. Put yourself first and say no to stuff you don't want to do. Bring on Tuesday and your period!

Hi all,

I hope you don’t mind me joining.

Im 34, husband 35 - we’ve been trying to conceive since 2016. Unfortunately in 2017 we found out my husband has Sertoli cell only syndrome and produces no sperm. Made the difficult decision to use donor sperm and started ivf in 2018. I had no known fertility issues and naively thought this was our answer!!!

I have had 6 cycles of IVF - all transfers have been day 5 good quality embryos.

2018 - 3 fresh transfers and 1 natural FET - all BFN.

Had general tests for RIP and NK cells and all fine.

July 2020 - natural FET resulted in my 1st ever BFP - empty sac at 7 week scan and I miscarried at 9 weeks.

November 2020 - natural FET - another BFP - empty sac at 7 week scan and I miscarried at 10 weeks.

May 2021 - another fresh cycle. Best ever cycle and 4 day 5 embryos - transferred 2 and froze 2. 3rd BFP - miscarried at 6 weeks.

August / November 2021 - 2 frozen transfers - both BFN

Up until end of last year was told ‘bad luck’ and keep going. We did consider ERA before last fresh cycle but because I’d achieved pregnancy I wasn’t sure!!

Fast forward to now - another fresh cycle in March 2022. Planned on PGT-A testing but only got one suitable embryo and it was frozen. Transferred 2 poor quality embryos but knew that wouldn’t work! Had the ERA / EMMA / ALICE. ERA and ALICE fine but EMMA showed 0% good bacteria and I think he said 60% bad. I haven’t seen the report yet as he rang me late on to discuss! I presume this means 0% lactobacillus. I’ve just started 14 day course of metronidazole- 400mg three times a day. Then it will be probiotics for a month before another biopsy.

Ive been reading this thread all week. I’m looking at buying some probiotics now and have found the comments really helpful! Any advice / support anyone can give me is appreciated. It’s been a really long journey and I have mixed emotions about finally finding an ‘issue’. My consultant is optimistic we can fix it and that this is the cause of my implantation failure / miscarriage. Seems a bit too good to be true though??

I feel sad I’ve wasted so many embryos but when I first became pregnant everyone thought that was a positive so we didn’t look at doing more tests. Hindsight is a wonderful thing and I guess I can’t dwell too much on what we didn’t do sooner.

Sorry that was a longer post than I intended!

Molly

Hi @Molls87 sorry for the difficult journey you've been on 💐

@Gardenlady543is our resident expert on all things related to healthy bacteria and I'm sure she'll be along soon. There are a few others who've also experienced similar results.

Welcome to the thread x

Thank you! Yes I had noticed gardenlady seems the expert and have definitely found her posts really helpful!! There doesn’t seem to be too much information out there in terms of other peoples similar experiences of this issue so it’s great to find something!

Welcome @Molls87 :) sorry to hear about the 0% lactobacillus I think there is 3 of us that have had this now, so you've at least got company!

I wrote this post about the microbiome on Reddit that might be helpful:

https://www.reddit.com/r/infertility/comments/rwsxwy/theuterineemicrobiomeemmaaliceemenstrualfluid/?utmmsource=share&utmmedium=iossapp&utm_name=iossmf

I talked through the treatment with another user, I think this might have been in the last thread so you've probably seen it, as you're on metronidazole you must have had anaerobic bacteria detected so you may want to add in another antibiotic- vaginal clindamycin, this is what I did with the second course of antibiotics that finally resolved my issue. Bacteria can be resistant to certain antibiotics so this gives you a good shot of making sure you're on an antibiotic that will clear it. You may want to take the antibiotics for 10-14 days, I think EMMA ALICE tends to say 7 but that may not be enough as bacteria like garnderalla protect themselves with biofilms and longer courses usually get it eradicated. You should use a vaginal probiotic and antifungal pessary or cream while on the antibiotics and then follow it with at least 10 days of vaginal probiotics, I recommend using a course of vaginal acid tablets like balance activ at the same time as the probiotics.

I hope everyone else is ok, I added up how much I've spent to date £££ :( seems so unfair, all the things I could have done with so much money. I also went through and put together what I feel Gorgy needs to see, I'm interested to ask him what he thinks my chances will be.

Thanks so much for your response! Helps to know I’m not completely on my own. I did go mad yesterday and buy a load of probiotics so hopefully will start those today. Luckily my consultant put me on 14 days (despite recommendation of 7) as he wanted to make sure it cleared it although no mention of the other antibiotic. How did you manage to get that? I’m hoping I get my letter from him soon as I have so many more questions now I have researched. When he gave me the results over the phone I had no idea what he was talking about!!

I can definitely relate money wise!! Makes me feel a little ill when I really think about it!!

@Molls87 it sounds like your specialist knows what they are doing which is great. The clindamycin is basically just an extra step you can take, but it will wipe out everything even good bacteria whereas the metronidazole can spare it. Of course if you have no good bacteria to begin with you don't lose much!

What you could do is take the metronidazole and follow with the vaginal probiotics then check your vagina pH, if it's acidic then hopefully you've sorted it and go ahead and do the repeat EMMA ALICE.
If the pH is >5.5 then do a course of vaginal clindamycin, repeat probiotics again check the vagina pH if it is low (good) then do the repeat test.

Vaginal pH is kind of a screening test, it will tell you if you have a good amount of good bacteria in the vagina. If you don't then your uterus probably won't have a normal microbiome either, it may save you going through the time and effort of a repeat EMMA ALICE when it's likely to tell you you need more treatment.

Thank you. My consultant wants me on a month of probiotics after which is fine but a lot of delay if the bad bacteria hasn’t gone! So that could be a useful test thanks. Do you know why people end up with such an imbalance? I just can’t get my head around it without any symptoms whatsoever!!

@Molls87 I wrote the causes in the Reddit post, have a read if you haven't already. Basically you need to control 3 things: keep the pH in the vagina acidic, keep a good amount of lactobacillus (good bacteria) and a low amount of dysbiotic bacteria.

As you're on metronidazole you basically have bacterial vaginosis, it happens when the pH increases, this allows dysbiotic bacteria to flourish, it takes over and the good bacteria lactobacillus diminishes, we need lactobacillus as they produce acid that keeps the vagina acidic.

Things that increase the pH allow the bad bacteria to flourish are:

• Water
• Semen
• Douching
• Soap
• Menstruation

Once the vagina has bad bacteria it can spread up to the uterus since they are connected, if you've had surgery, a coil or IVF there is a higher risk of this since the bacteria can be brought up with the process.

Believe me I'm in the "how did this happen to me?" club, I eat a diet so rich in probiotics it is insane, I culture water kefir, I make vegan cheese with probiotics, I have a recipe book on fermented food recipes, I even went on a course called go fermental and I took the best probiotics you can get and I had 0% lactobacillus... TWICE!!

Thanks so much. I’ve had a good read and it all makes so much sense in terms of my issues. My concern would definitely be reoccurrence so will absolutely try and keep on top of that if my next biopsy is ok. Experience tells me it probably won’t be as simple as everything just being ok in the next biopsy and a pregnancy but let’s take it one step at a time!

Sorry quick question - the balance activ tablets. I can only see pessaries and gel? Do they come in tablet form?

@Molls87 they don't come in tablets, I just say vagina acid tablet so people can find a suitable product as brands differ. The pessaries are the best ones I think.

It's hard to know whether this has been your issue, I was so sure this must have been my issue but then I treated it and it still didn't work and I found another issue, an immune problem.

But the way the EMMA ALICE doesn't test for ureaplasma, you should get a vagina swab to look for that as that's been linked to miscarriages, my friend has a miscarriage and then found out she had it.

@Gardenlady543 Fabulous I’ll get on them! Just did a vagina ph swab and it couldn’t have been any bluer if it tried!! Obviously to be expected but I guess good to see and now I know what it needs to get to. I can see this becoming an obsession though….

I appreciate your help so much.

@Molls87 that's good for you to have a comparison. I found I was pH 7 while on the metronidazole so you will need to give yourself some time to get acidic again, the balance activ helps as the lactobacillus need an acid environment to adhere to the vaginal wall, and in the absence of having lactobacillus there naturally it helps to create the acid environment artificially.

These are the cheapest pH sticks I can find:
amzn.eu/d/0M8yhlh
You'll need to use a cotton swab to apply some liquid on it.

@Gardenlady543 good luck for tomorrow's appointment.

@Janefx40 any sign of your period?

@VenusStarr how are the meds treating you this time?

@Yuliaaa how are you doing? Have you booked in for the second opinion.

Hope everyone else is doing alright.

No new news from me.

Hi @seven201 no new news is good news from you I hope 🤞🏼🤞🏼🤞🏼

I'm fine. Period should come tomorrow or Wednesday. Freaked myself out by doing vaginal PH tests and first couple were blue (but weirdly light blue not the blue on the card). Anyway have repeated this evening and green so going to try not to worry.

Feeling a bit flat about not getting this job. But going to pick myself up and carry on

Hope everyone else is doing well xxx

@Janefx40 I feel bad for getting everyone obsessed with vaginal pH monitoring lol, I have found through my obsession that the pH naturally changes during the cycle, especially before and after a period. I think it goes up a bit around ovulation as well.

Thanks @seven201 I'll let you guys know what he says. I have to wait another 3 weeks before talking to the surgeon.

@Gardenlady543 thanks. Is it Gorgy today? Be prepared for him to be brusque. His famous for his lack of bedside manner!!!

Good luck!

So I've had the appointment:

We went through my history. He seemed to be focusing mostly on the LAD result rather than the HLA match. I asked about the chances of it working he didn't really say, he told me about the amount of people who respond to LIT but I guess that is just a number improving. He didn’t say anything about neupogen or Intralipids.

He said he wants these tests

• endometrial immune profile, he said this will be important to outline the treatment plan, he doesn’t think the NK cell tests I’ve had are good enough as he says it’s mostly histological rather than looking at levels of activity.
• Insulin resistance test, because of the suspicion that I might have PCOS (high AFC but normal hormones) he thinks this will be useful, if I am I will need to go onto metformin.
• KIRS, This is a test that fertilysis used to offer in the past but it’s not on the list of things they can offer at the moment, I would’ve added it on if I could at the time so I think it’s fine for me to do that as well.

Because of the results from the tests I’ve had he wants me to have pooled donor LIT, he said this will involve my husband being one of the donors on one of two occasions and on the other occasion it’s purely donors. Four couples will go to the session, they will be like me and require donors and their bloods will be mixed together to give to the four partners. My husband will need viral tests, so I may look at him being in the 2nd session rather than the first.

So now it all needs to be coordinated he said I may as well get on with the LIT now as it will be one LIT, then another required 3 to 4 weeks later and then a test 3-4 weeks later so that should hopefully coincide with me being able to have fibroid surgery (I don't have the appointment to discuss the operation for another 3 weeks) and recovering from that. He said it will then last for 4 to 6 months.

He also wants me to go onto hydroxychloroquine but not until after I’ve had the biopsy and he wants the biopsy before the fibroid surgery. So to coordinate getting all of this done on the same day means having it on a day where they do endometrial biopsies (which they only do on a Tuesday) and LIT (Tuesdays and Thursdays). The endometrial biopsy needs to be after seven days post ovulation, I’ve predicted the date it’s needed to be Tuesday 19 July so I called up and asked to book it all in then and guess what, that is the week he is on holiday. They said I can have the LIT and blood tests then, but I’m arranging the date for the biopsy, so really that's the most important thing to get booked in. It’s going to really mess with everything if I then have to wait another cycle, I don’t want to put off having the fibroid surgery. The admin lady said that she’s going to speak to him and see if he has cover for somebody else to do the biopsy but told me that she can’t see anyone there at the moment.