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 Everyone,

Just me again. I’m still waiting on my hysterscopy and D&C but my doctor is pretty sure it’s endomteritis. He said clearing the lining to rejuvenate a fresh one to grow as mine is currently damaged is a starting point followed by an antibiotic protocol.

I’m just so worried that it’s been damaged and infected for so long it might not be curable?

It’s been caused from the chorioamtetis which is why we lost our baby. I googled pretty much ALL of last year but struggled to find info on endometritis as spotting before a period just kept suggesting low progesterone. I tried so much and now I’m feeling upset that I didn’t spot this sooner.

I found out last July we lost due to chorio and endometritis is very common after it. Just feeling so deflated that it’s been left this long and maybe not be able to cure it.

Has anyone on here had endometritis?

@Loz2467 this (unfortunately) is a marathon not a sprint. Or maybe it's a treasure hunt. Don't beat yourself up for not realising sooner. It takes years of different experiences and results to work out what's going on.

@seven201 lovely to hear from you. May FET sounds exciting. I've piled on loads of weight too. Gave up all sugar, sweets etc for 8 weeks now and just re-weighed myself and....I haven't lost a pound. Not even a bloody pound. Grrrrrr.

@Dochas12111 that is great advice about not spoon feeding. I have done that in the past but it doesn't help. Best to let them speak. Actually I love my current consultant because his style is to talk and go through in detail what he thinks and then he stops and says "now what are your thoughts?". So we get the best of both.

@Violette22 hope the intralipids went ok. I quite like them. They feel pleasantly cool!

@Yuliaaa glad you're up for the spa day. @Gardenlady543 how about we just do foot massages and pedicures instead (no water, no steam?)!!!

Ps I was joking when I mentioned the spa day but am well up for it now!!!

@Janefx40 I can't believe you've been so good and not lost any weight at all. That is so unfair!!

@Loz2467 I'm sorry, I don't know anything about that. I think all of us on here look back and have big regrets about some of the decisions we have made. You just can't know though, so be gently to yourself.

Oh wow @seven201 you will be doing a transfer in no time!

@Janefx40 where about a are you in your treatment at the moment?

Hi @Loz2467 as far as I'm aware endometritis is fixable. When I was discussing Ashermans syndrome with the specialist he said the worst cases of this condition are where people have severe scarring to the extent that they basically produce no endometrium at all. Now if you are producing lining then you are not in that boat. Every cycle we shed lining, and we get a new one for the next cycle, your specialist feels getting out what's there will give you the best chance so I think you'll have to trust him. When I talked to the fertilysis doctor he mentioned that even when an abnormal microbiome is resolved there can still be endometrial issues and a hysteroscopy would be needed to inspect it, so this sounds like the rationale for the surgery. Now you may need a prolonged course of antibiotics, perhaps 2-3 weeks followed by a intensive regime of probiotics. But I am optimistic that you will get this resolved.

Hi everyone

I hope you don’t mind me jumping on this thread. I’m a long time lurker and got some great advice from @Gardenlady543 on another thread.

I’m sorry to hear so many of you going through such a hard time. This process is heartbreaking.

I was wondering if you could offer some advice… I had the endometrio tests before Christmas which showed I only had 6% lactobacillus and a high level of gardnerella. I did a round of coamoxiclav and then did a mircrobiome re-test with Fertilysis. This showed that my lactobacillus had improved to ‘average/normal’ levels, the gardneralla had reduced but it was still there. I subsequently did a round of metronidazole (for 7 days) followed by vaginal probiotics. The doctor at Fertilysis said I didn’t need to repeat the test after the antibiotics/probiotics. I’ve also been taking two oral probiotics (bio-femma v and optibac) and I’m doing a course of symprove (which I think one of you advised as well).

Notwithstanding all of this, with my next FET (planned for this month) my ivf consultant wants me to do another round of metronidazole from ovulation as she says gardneralla is prone to coming back. I developed oral thrush (and got a stye in my eye which won’t go away) when I was on metronidazole the last time and I don’t want it to ruin all the good work that I’ve done building back up my microbiome. I did send another sample to Fertilysis but I don’t think it will be back before I need to decide whether or not to do the antibiotic. Does anyone have any advice? My gut (pardon the pun) is telling me not to do the antibiotic but I’m so nervous about making the wrong decision. If this fails, it’ll be my fourth failed transfer in a year 😔

Happy Easter to you all

@CurlyJ21 so it's completely up to you, the good news is metronidazole is supposed to spare the lactobacillus, while other antibiotics kill it off. Clinically you will know if you need it by taking your vaginal pH (you can get some tests from Amazon), if it's less than 4.5 then hopefully you should be good. You can also try a whiff test, get some vaginal fluid and give it a sniff, if it smells of fish then your gardnerella is back.

I think if you did decide to do the antibiotics in the early part of the cycle before then you'll have enough time to ensure you keep the lactobacillus high, alternative daily between clotrimazole 100mg and a vaginal probiotic when on the antibiotics, then use a daily vaginal probiotic all the way through your FET, right up until you first scan if it works.

@Gardenlady543 have you had your latest thyroid results back?

@CurlyJ21 sorry, I don't know anything helpful. We're so lucky to have garden on here. I didn't know that about the fish smell!

@seven201 yep I'm still in range, so looks like I was lucky in responding quickly, I'll repeat again in a month (the advice of the endocrinologist, not the gp who hasn't advised about blood tests at all). Also for some reason my gp only gives me a 1 month supply at a time which is a bit annoying as going to the pharmacy is out of my way.

@Gardenlady543 that is good news! Annoying about the pharmacy though.

Hello hope you don’t mind me just jumping on this conversation. I just read about progesterone testing and found that quite interesting. So are you saying to test on the day and if less than 50 to ask for progesterone in oil injections? Is that just for the day or to continue till 8-12 weeks?
My progesterone level for my last failed transfer was 75 11dpt xx

@Babydustt12 my specialist let me have my progesterone checked the day before transfer, the result then came back on transfer day and we increased up my dose. Nobody knows what level is best, some have a cut off of over 20, others 30, my specialist likes it over 50. Your level sounds ok. Progesterone in oil is the best form to increase progesterone levels, but has to be injected into the muscle which is painful. It seems to be used frequently in the USA, but isn't that commonly used in the UK.

@Gardenlady543
That’s good to know I will get it tested the day before as well then.
Also I didn’t get my progesterone level tested before starting progesterone? Do you know if that is ok?
Also if I was on estrogen tablets for the ERA and change to patches for the FET will that make a difference?
Also you are really so knowledgeable thank you for all your advise :) 💕

@Babydustt12

The oestrogen won't have an impact on your progesterone level.

I don't think testing the progesterone level before starting is done routinely, they ask that this is done in an ERA because the ERA result will be inaccurate if your body is producing progesterone before the starting time of the progesterone you are taking.

Some places will check your progesterone in a fresh cycle for a similar reason, progesterone is specifically timed prior to a transfer and they can't time it if your body starts producing it ahead of time. I would hope in a medicated FET that they would know if it's likely a follicle is producing an egg which would release progesterone.

That’s great thank you for reply really appreciate it :)

Hi, hope you won’t mind me jumping on the thread, but I have a mock cycle with endometrio testing coming up and have so many questions. I wonder if one of you might be able to help?

I’m due to have the test in a few weeks. However, I’ve only just had egg retrieval on Thursday with period due this weekend, so is it better to have a break? As it’s not going to be a typical period I’m unsure about doing a mock cycle yet.

I’ve previously been treated for endometritis and recently had the Invivo test which showed I have low levels of good bacteria and high levels of inflammation. Strangely my partner tested positive for gardnerella vaginalis following a urine culture but it didn’t show up my Invivo results. That could be because it’s travelled further up the womb and is no longer in the vaginal tract and I suppose the endometrio will identify that as well the possible return of endometritis?

I also wonder if there are other tests I should be considering. My clinic suggested seeing Raj Rai for a TEG test as I have a couple of gene mutations that point to thrombophilia, and that test will confirm how much aspirin I need to take. They also want to repeat immune testing and I’m interested to get thoughts on whether to have Chicago tests again or go to someone like Dr Shehata.

Appreciate some of these questions aren’t about the endometrio tests but I imagine some of you will have had other investigations too? Thanks so much for reading.

Timing of the mock cycle:
It is up to you when you do it, for a FET they normally recommend a cycle off and then doing it the next cycle, so you could replicate that if you wanted. But it probably wouldn't make much difference.

Your recent result:
What do they mean high levels of inflammation? Did they find dysbiotic bacteria if so what?
You haven't said what you're doing about the recent result, was this a vaginal swab? Have they recommended treatment? If so maybe use this cycle to do that. Given your partner has gardnerella (I'm assuming they are a man, I suspect this is pretty rare in a male). Are they being treated?

Based on your partner having gardnerella and therefore you likely having it too and in the absence of knowing what strains of dysbiotic bacteria you have, I personally would go through treatment if I were in your position before doing an EMMA ALICE. I have outlined a treatment plan for gardnerella in the past which is what got me from 2 x 0.00% lactobacillus to optimal numbers.

I would (if not allergic):
Order from online pharmacies, or get a gp to prescribe:
Metronidazole 400mg orally three times a day for 2 weeks
Vaginal clindamycin once a day for 2 weeks
Take the antibiotics at the same time as one another. Alternate daily between a vaginal probiotic and clotrimazole 100mg pessary while on the antibiotics.
Take an oral probiotic daily (take this forever more- femdophilus, optibac for women and femme v are good ones)
After this course of treatment for 10 days: use balance active once a day with a vaginal probiotic (I have posted about the best ones to use before, happy to post again if you can't find it).

Not heard of the TEG test, Prof Brosens told me he doesn't recommend aspirin for FETS only heparin, aspirin can interfere with implantation. The dose of heparin should be standard, so I don't see a reason to do a specialist test, but I'm not a specialist in this field.

You say repeat immune tests, what immune tests have you had?

Don't worry between us here I think we've had every test going, so we can help to advise.

@MyEasterEggs sorry forgot to tag you but I wrote that for you

Hello everyone, I hope you had a nice Easter despite the challenging situations.

@Janefx40 that's funny, I cant feel any coolness with Intralipids :D. Getting them is pretty boring, takes almost 2 hours!

@Dochas12111 thanks for the links to the Irish forums! With rpl I mean recurrent pregnancy loss.

We had our call with the Greek IVF Serum today. Here is what they recommend:

-A DNA fragmentation test for my partner as this can cause early miscarriages which I/we suffer from. They said they have lot of experience with the DNA fragmentation being a problem. Has anyone here had it tested? I find it weird that no doctor here in Finland has ever offered it although I can see that we could test it here as well.

-They also want to do a hysteroscopy for me. The consultant said they have some special hysteroscopy method which can improve implantation. They also want to check for any dead tissue and do a "rejuvanation" for my uterus LOL. I am not sure what all this means and will ask for more details via email. Anyone has any experience which such a hysteroscopy?

-They also suggest Chicago immune testing and possibly trompophilias. Does anyone know here what are the different tests included in the Chicago immune test? Is the Chicago test a good package for testing immunological stuff?

-Since my EMMA situation is unclear after the second test that showed "ultralow biomass with normal profile" we could do a third test here or they could take a bipsy in Greece at the same time that they do the hysteroscopy. This is really up to us.

Thanks so much for the advice @Gardenlady543

My Fertylsis result actually came back today and the doctor said it’s basically the same as last time - so no improvement on the metronidazole with gardnerella still present in ‘moderate’ amounts. So it’s definitely another round of antibiotics for me. I just need to decide whether or not to do a transfer this cycle. I’m planning to do a natural FET and currently at the clinic for a scan. I expect the transfer will be scheduled for 7 days time so not a huge amount of time for antibiotics etc. Not had any advice from my consultant yet either. Its never straight forward is it?!

Hi @Violette22 my husband has had his DNA fragmentation done (we’ve had a couple of miscarriages). His came back ok but not brilliant. It’s a pricey test but definitely worth it as I’ve seen a lot of women on here find out their partner has an infection/varicocele etc that’s affecting the sperm quality which can then be treated.

Sounds like Serum are being very thorough in their testing which is a good thing!

@Violette22 that sounds good re Serum. I can’t believe they haven’t investigated DNA fragmentation yet for you. Definitely get that done as high DNA damage can cause miscarriages and it is also something that can be fixed or improved if cause is an infection or variocele.

I’ve heard of people having lining completely removed so it starts of completely fresh and a woman online whose transfer after this worked. Maybe that’s what they mean?. I’ve also done the Chicago bloods which led to me being put on steroids due to out of range results. What are your Intralipids being based on if you’ve not had Chicago bloods done? Did they base this on a lining biopsy?

It’s good they are going to continue to investigate Emma results.

I’ve also had thrombophelia bloods done but they came back fine.

All of what they suggest I’ve had done bar hysteroscopy which we were going to do if my transfer after the rest of the stuff had failed.

@Gardenlady543 thanks so much for your detailed reply. The relevant results from the Invivo Vaginal Ecologix high vaginal swab are attached. I haven’t shown the other pages as everything else was within normal range or undetected.

Here’s an explanation for the inflammatory marker:

“IL 1β is a marker of inflammation in the vagina; and if it is high this is an indicator that all is not as it should be and an immune response has occurred.
Your IL 1β is high and outside the healthy range at 475pg/ml (refence is

@CurlyJ21 the cost of the DNA frag test in Greece seems to be around 100 euros, 400 euros here in Finland. Did they treat your husband for the "ok" result?

@Dochas12111 Very interesting to hear that the DNA fragmentation thing is so common, I dont know why no-one here has ever offered it to us :O. What is bar hysteroscopy? :)

Yes, I have been getting Intralipids here in Finland based on no investigation, quite funny isnt it :D. The clinic here uses it for unexplained recurrent miscarriages. There is no possibility to do the immune testing here so they use them "blind". It is quite absurd but Ive also understood they cant hurt you even if you dont have immune issues.

Yes, I think the Serum hysteroscopy is like you explained, "starting everything fresh". It does sound good but it is also very expensive..:/ 1680 euros. And I need to check if this includes all possible operations during it.

Do you know what different tests did your Chicago blood include? I am really confused because this Chicago package is around 300 euros in IVF serum. But I am looking at another interesting clinic in Athens that specializes in reproductive immunology. They have a loooong list of different tests, I will put the link here. So does anyone have a clue what are the important tests and what not? You can find the tests I am talking about under the section "Special immunological tests". There are so many tests and I dont know what is important and what not...please help! :D

www.lifeclinic.gr/en/services/price-list/

@Violette22 we’ve been to Serum and had those tests.

I had the period blood test and both myself and my partner were treated for hidden C.

Then travelled for hysteroscopy which showed I had endometritis so I was prescribed antibiotics to treat that. They did implantation cuts, which as you say may regenerate the womb lining.

My partner did a sperm DNA test but there was a bit of a balls up as it’s not the same as SpermComet (UK) and we were led to believe that his damage had dropped from 27% (SpermComet) to 8% (Serum DNA test). We discovered just two months ago (three years later) that the 8% was equivalent to around 23% on the SpermComet. So make sure that if you do a test and repeat it that it’s one or the other. We genuinely believed he’d had some incredible drop in fragmentation and had the super sperm we had been longing for. Not the case!

They also repeated immunes but they’re not Chicago as far as I’m aware. I had Chicago tests in London and then did the Serum tests but I’m not convinced they’re the same after the sperm experience. I did test negative for immune tests with Serum so it’s not as though they were trying to pedal anything I didn’t need.

A friend of mine had success with Serum last year after a long and painful road so I’m not discounting them. I’m just being honest about my own personal experience, which in some ways wasn’t great, but we definitely got information and I did like the team there.

Now I’m doing IVF it just wouldn’t work logistically for me to go back. So I’m with a clinic in London now.

Has anyone had experience with Dr Shehata on immunes?

@MyEasterEggs oh that's interesting, I haven't seen these markers before, perhaps it suggests a previous infection that has cleared. It is really hard to know what's going on in the uterus. Maybe hold off on the antibiotics for now and see what the EMMA ALICE says, but do post the result when you get it as I feel their treatment plan is not aggressive enough. The vaginal pH is good and it's great that you've got lots of l.crispus which is the strain most studies look at. I think go for the Bio Femme as that's a good probiotic, are the other invivo products other probiotics, if so maybe skip those. The caneston products seem to be a vaginal probiotic and a product similar to balance activ.

@CurlyJ21 oh how annoying what bad timing! Honestly the microbiome can be thrown off so quickly, this is why I don't go in water or have sex etc. did you do the intensive treatment regime I spoke about with clindamycin and metronidazole for 2 weeks, if not if you postpone you should do that.

@Violette22 that's a really interesting plan, I was thinking of testing my husbands sperm for fragmentation and for the microbiome. It sounds like they have a really good plan sorted for you, covering all bases.