ERA EMMA ALICE testing thread #6

[Gardenlady543]

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22 @2021ivfagain @OrangeBengal @Enfys23 @Loz2467 @DEIVF @Hopeful199 @ER12 @greendress789 @Douchas12111 @Lori2022 @AdviceForJane @Anonbaby @Molls87 @ChickenT2b @GoldenElephant @IVF22 @StillTrying10000 @warrior101 @whatcangowrong @Yaynayokay

Oh yes it really has happened we are onto thread #6.

All are welcome to join us, we started out as people interested in ERA EMMA ALICE but we seem to have had every test available between us.

So if you want to know about the microbiome, reproductive immunology or you just feel your case is complicated and what like minded people to talk to about it you've come to the right place

Thanks everyone, it's nice to have one less thing to worry about with the good result post LIT. It's been a good week for me with the scan and this result, but I still feel a bit hopeless. It should be just under 2 weeks until I can start now. I should be speaking to my specialist at the end of the week so will ask if we do medicated as planned or switch to a letrozole cycle. I'm not sure what to think I've done so much now to prepare but it's felt very sad when I've gone into cycles in the past thinking it will work and then felt deflated when it hasn't.

@2021ivfagain if you are having a mock cycle to look at the microbiome you are best not using vaginal probiotics as the test may just pick up the ones you've put in which won't give you an accurate reading of what your microbiome is actually like.

Also I am super annoyed at your acupuncturist. I remember someone saying to me "I think you need to know when to stop" in my early days of IVF and it infuriated me, why should this person who has a number of children tell me, an infertile person that I should give up on my dream at some point. I am all for setting boundaries but it for the person doing the treatment to decide what those boundaries are, not some outsider.

I was signposted here from another thread as having last nhs funded cycle January but came across microbiome testing etc and wondered if anyone had a reputable company to test and what they used correct imbalances. If we go private for more cycles will consider the next bits like emma/era but not sure what they're about and it's too much info to get my head around right now.

Hi ladies hope you've had a nice weekend. Is anyone here with / been with Care Fertility and had their level 1 or 2 recurrent implantation tests? I can't find much info on their website as to what they entail. Before starting with Care, through St Mary's recurrent miscarriage testing, I've had thrombophilia screen, cardiolipin antibodies, lupus anticoagulant, celiac screening, Vit D and thyroid function (all normal). I'm not sure if there will be some overlap with the St Mary's ones and Cares and therefore I don't need further tests with Care. I've had 3 eupiloid embryos from donor eggs fail to implant and after our 2nd failed transfer, our consultant advised surrogacy / adoption if the 3rd fails. After our 2nd failed implantation, I asked about further tests and he said they didn't have any more tests or treatmenr to offer me.
I've had the endometrio tests after the 1st failed transfer which showed up 0% good bacteria, gardnerella and needing longer progesterone.
We've a review on Friday with him and I just want to go in with as much info as possible on their tests. I'm going to ask about a hysteroscopy, which I know they do and immunological tests but not sure if they do them and if I'll have to go another clinic. I'm considering seeing Dr Gorgy for a fresh set of eyes on it. Thanks very much

@Janefx40 Thanks for the heads up to write on the correct thread! I thought it had been really quiet with no one saying anything! Hope your migraine is better now

@Enfys23 sorry to hear about lining issues. It sounds like there's options and a hysteroscopy would be a good idea

@Peony00sorry to hear about your fertility struggles up to now. And your feelings and thoughts will be felt many of us on here. I've been under St Mary's Miscarriage service to have some tests done and will be under them on a positive pregnancy test to be scanned every 2 weeks. Hopefully they will be able to give you some answers and put a plan in place to make you feel supprted. Miscarriages are extremely difficult to deal with. There is support out there if you feel you would benefit from it. There's a book by Zoe Clark Coates called Saying goodbye which is good and resonates. I also had PTSD after my miscarriages and after having appropriate therapy feel alot better after it. So if you haven't had any therapy and feel you would benefit from it, it's worth looking into

@seven201 fingers crossed for you this cycle

@2021ivfagain sorry to hear what your acupuncturist said. I think people sometimes say things with the best of intentions but don't realise the impact of their words. Both of my friends kids are from day 3 blasts so there is definitely hope

@Gardenlady543 really pleased to hear your news re your scan and LIT. At least you know you're going into your next cycle doing everything you possibly can. Fingers crossed for you

@MyEasterEggs I've had my first consultation with Anna Firth today. She was brilliant, really informative and helpful. So thanks very much for suggesting her 😊

@DEIVF so pleased! She’s been so supportive 💛

Hi @DEIVF thanks :) also yes I had their level 1 implantation failure screen which was:

Autoantibody screen
• Thyroid peroxidase
• ANA
• Mitochondrial antibodies
• Smooth muscle antibodies
• Gastric parietal
• LKM
• Anticardiolipin IgG and IgM
• Beta 2 glycoprof igG and IgM

Thrombophilia screen
• PT
• INR
• APTT
• Fibrinogen
• Antithrombin II
• Protein C
• Free protein S antigen
• PAI-1 4G/5G
• MTHFR

They also did the C4M2 test which is specific to care and involved me and my husband having our blood taken and we were told if either of us had the mutation then I'd be on heparin. Altogether it cost £1500 but I expect it's even more now. You may be able to pick and choose the ones you haven't had elsewhere for a lot less, my friend did some of the autoantibodies through medichecks.

Hi @kerrym87 you've come to the right place :) I wrote a post about the microbiome here https://www.reddit.com/r/infertility/comments/rwsxwy/theuterineemicrobiomeemmaaliceemenstrualfluid/?utmmsource=share&utmmedium=iossapp&utm_name=iossmf
The least expensive option would be a vaginal swab that checks for the RNA of bacteria. I haven't had this but I think there's a few products on the market and I think some others here have done this. This won't tell you exactly what's happening in the uterus but should give you an idea. The next option is a menstrual fluid microbiome test through fertilysis. And the EMMA ALICE which would involve taking a biopsy of the endometrium. The treatment will depend on what's found, some people just need to increase the lactobacillus so will need to use vaginal probiotics, there are few different products and I can tell you my favourites if you're at this point, I recommend using them with a vaginal acid product like balance activ (I explain why in the link I sent). If dysbiotic bacteria is found then you'll need antibiotics that target this which would need to be prescribed and then you'd follow it with the vaginal probiotics.

Thanks so much for this info @Gardenlady543 that's really helpful.

Thanks so much for this info @Gardenlady543 that's really helpful. And a useful tip that I can get the ones I haven't had done yet, done elsewhere for possibly cheaper. Thanks again 😊

@Gardenlady543

I’m pleased the LIT worked and you’re progressing to your FET cycle before the end of the year.

I stopped the vaginal pessaries 3 days before the biopsy. I hope the Emma and Alice are ok. I feel I need several weeks to just keep taking canesflor and physioflor vaginsl pessaries! I was so nervous about the biopsy today. I was having smear test and biopsy on same day and the smear was definitely worse. It’s strange as when I had an endometrial scratch 3 years ago the pain was terrible! Today it was ok with deep breaths.

The acupuncturist made me feel upset today but she also said I need to focus on making more memories with my son. This is true and I will but I just set my heart on having a sibling for my son and extending our really small family.

@DEIVF

Thanks for your message. I have 7 day 3 embryos left as I did batching with the aim of PGS testing, but opted out of PGS testing when I saw I wouldn’t get many blastocysts. My clinic only does blastocyst transfers. From what I have they have predicted 2 or 3 blastocysts.

They freeze at day 3 so that they thaw them from batches simultaneously and then culture to blastocyst stage at same time. I got worried about thawing and refreezing so I yet thawed my other embryos from last two cycles. These unfortunately resulted in two day 6 blastocysts which were of poor quality and deemed not viable so they were discarded last month.

@Gardenlady543

What is the letrozole protocol? You’ve worked so hard on this and have done so much research.

I’ve read your article that you posted. How long did it take to improve your lactobacillus quantity and is 90% considered normal?

I have to wait 3 weeks for my results from biopsy so my transfer will have to be in January.

@2021ivfagain I think biopsies are different every time sometimes I've found them pretty awful and other times I've found them fine. Well done for getting through it. I think the issue for me was the various dysbiotic bacteria I had, it took 3 different antibiotics to get rid of them. Once I took the second regime which I took for 2 weeks and it had 2 antibiotics in I took daily vaginal probiotics and took 7 days of vaginal acid tablets. I then kept using a vaginal probiotic daily during the FET that didn't work and the repeat test of the lining from that cycle (menstrual fluid) showed a normal microbiome result.

Letrozole cycle would involve taking 5mg from CD2-6 I can't remember if it's once or twice a day, me and my specialist discussed it at the beginning of the year and then came the hypothyroidism, thin lining returned and fibroid surgery. So we shelved it and decided on a medicated cycle, but who knows. I'll see what she says I guess.

@2021ivfagain studies have shown good outcomes for both over 90% and over 80% lactobacillus.

@Gardenlady543

Did you use cyclogest with vaginal pessaries like canesflor? I was worried, even though taking cyclogest rectally, that it would interact with the vaginal pessary.

@2021ivfagain that sounds promising of having 2-3 blasts from your 7 embryos. That's a really good outcome. We've done donor eggs and we got told to expect a similar outcome to you. So fingers crossed that is what you get.

I've had the emma and Alice and it was painful but it was over in a couple of seconds. The pain was definitely tolerable. You could always take paracetamol an hour beforehand. Once the biopsy was taken, I had no issues with bleeding or pain egg afterwards

@DEIVF

Thanks. It’s my last chance as can’t afford it anymore and egg quality has got worse.

Yes it was better than expected. Last time was awful but it was not so bad. They have tested for nk cells as well so hoping things are not bad. The three week wait is going to seem a long time.

What’s your next step?

@2021ivfagain yes, it won't react don't worry. I tried to insert at slightly different times but it will be fine.

@2021ivfagain we've got our review on Friday with our consultant and were expecting him to tell us adoption / surrogacy as it's our 3rd failed transfer. I'm going to ask about a hysteroscopy due to my history of multiple ops for endometriosis and D&Cs. And we're also going to have some immunological testing done and get a 2nd opinion. So a few steps we can go through over the next few months whilst we try and get to the bottom of it!

thanks for info - still feeling quite overwhelmed with it and now sure how to move forward. I don't know how receptive NHS clinics are to microbiome/EMMA /alice and giving treatment. 2nd cycle was going really well then covid torched my eggs mid treatment and I was quite unwell with it so we don't know if it would have worked otherwise.
Our next cycle at moment likely end January - our third and last NHS funded and it will have been nearly 7 months since last one due to holidays and xmas so not sure there is enough time to push for uterine biopsies and treat for this cycle. Can't face pushing it back further but wasn't in a place to look at it sooner. Is it possible to get fertilysis tests done myself and will that company source/provide any antibiotics and suggest probiotics as I don't know being in UK how successful I will be getting a health professional to prescribe antibiotics? Trying to get appt with consultant before xmas to discuss next cycle. thanks

next consultation with fertilysis to even order tests is 15th december, does anyone know any other companies at all?

@kerrym87 the consultation is to discuss what tests you might want to do, if you know you want to do it just order it, you don't need a referral or anything.

They will produce a report that shows if you have a normal microbiome or if abnormal it will say what bacteria you have a give a suggestion for the antibiotic to take. If you want a full treatment plan you need to pay for a consultation to discuss it with them, I think that's €100, they can write a international prescription I think but you may have trouble getting it in the UK.

If you take the report to your GP they would hopefully write a prescription for the antibiotic. Some antibiotics you can order from online pharmacies where you put in some information and a GP checks it and writes a prescription.

Thank you for the tag @Gardenlady543 I'm doing ok. Really need the break I think.

I'm just popping back because we have out wtf appointment with the ivf clinic on Monday and I'm completely blank at what to ask. We're definitely not up for more ivf yet. We're taking a break until after a holiday in the new year.

Also will need to see Dr Shehata after anyway. But if anyone has any potential questions we can think about, please let me know.

Hope everyone is OK ❤️

@kerrym87 i replied to you with some info on my Fertilysis tests on the donkey thread. I didn’t have to see their consultants at all and my Lister ivf consultant gave me the antibiotics they suggested.

hope everyone here is ok, I’ve not updated in a while as I’ve been finding it all a bit overwhelming. But I’ve just today finished metronidazole and Co-amoxiclav @Gardenlady543. I’m day 6 of stims for second EC and am also taking probiotics.

Hope you’re ok @VenusStarr, I know you’ve gone through a lot.

Hey @VenusStarr, so glad you’re doing ok. I think I’d ask about the thaw. I was surprised that your embryos seems to degrade so quickly, did the clinic get the timing wrong?? I’ve been through 3 thaws with my most recent embryo going through two rounds of PGS testing and thawing prior the final transfer thaw and it was still ok. Grades: 5AA, 4BB and 5BB (4BB prior to final thaw).

Hi @OrangeBengal do you mind me asking if you’ve had any success with the transfer of your twice PGS embryoS I’ve just had two remaining embryos retested and I’m worried about the further thaw and damage from two biopsies impacting on implantation/success

Hey @Dochas12111, yes it’s the only one that’s worked so far! This is my first positive pregnancy test in just shy of 3 years trying (including 4 transfers). I had two really strong betas at 9dp6dt and 12dp6dt, just waiting for my 7wk scan on Friday.