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Infertility

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ERA EMMA ALICE testing thread #6

1000 replies

Gardenlady543 · 09/11/2022 15:34

@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 Smile

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Thread gallery
28
Janefx40 · 28/11/2022 11:31

@seven201 I'm so sorry about your recent cycle. It is rubbish and you're more than allowed to feel sad/pissed of/frustrated with the world. Sending love x

Gardenlady543 · 28/11/2022 13:22

@seven201 I know it's rubbish isn't it, it's so little effort to ask how someone is. All I do is dictate what I need and it's just fighting fires really. Erg and vomiting and parking ticket, seriously Universe what is it doing to you!!

@VenusStarr I hope you get somewhere at the April appointment, it's so frustrating you have to wait this long.

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Loz2467 · 28/11/2022 17:55

I feel bad when I post because I really can’t help many of you on here with me being at the start of my IVF journey. I don’t even understand the information in a lot of the posts but I send hugs to all of you! It sounds such a tough journey for a lot of us.

Secondary infertility being completely unexplained is hurting my mind! I’m constantly looking for a reason and wanting to know why I suddenly have it and why I’m getting brown spotting for a whole week before my period etc but I just can’t find answers. The last thing would be a laproscopy but it’s not on the cards yet.

My clinic haven’t replied to my emails but I’m keen to get things set up ready for the next cycle especially as I ovulated this month on cycle day 11 which has never happened before!!! It’s usually say 15/16.

Do you have a scan on cycle day 1 or not? Because I have a feeling it could land on New Year’s Day and that would be just my luck!

xx

Gardenlady543 · 28/11/2022 18:03

@Loz2467 don't worry about not having an in-depth knowledge about all this stuff. Hopefully you won't get to the point of having to learn it all. I knew very little when I first started, I remember obliviously floating through my IVF cycle back when I started this journey. My clinic doesn't do a baseline scan but I know some clinics do.

I'm sorry we can't help you get to the bottom of the spotting. Why don't you pay for a online second opinion? I did this, you give them any info you have, results of tests etc and they will produce a report on what you should do next. It costs $350. You're in the early stages but it might be useful to find out from an expert what this spotting might be because of:

www.centerforhumanreprod.com/contents/services/second-opinion-program

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Enfys23 · 28/11/2022 19:56

OMG @seven201 thats enough to make anyone feel like that!! The universe can definitely be ridiculously unfair sometimes. Sending hugs

@VenusStarr so disappointing to hear your review was not that helpful. It really does suck when you can’t have confidence in those who are meant to be the specialists helping you. I hope though that you are feeling positive about what sounds like a good plan on your part.

@Gardenlady543 I hope you’ve got some respite from the chasing and sorting now and can just focus on you and staying calm and positive for this cycle.

sorry if missed anyone, sending hugs to everyone going though tough time right now.

I had discussion with dr (not my usual) about biopsy results. He did advise repeating the ERA. The gutting thing is this likely won’t be until January because of Christmas. Which means earliest reattempt at FET would be Feb when 1. I really feel time is ticking with the POF/DOR issues if need further egg collection cycle and 2. My other half will be away with work for a significant chunk of Feb and March. I have raised some options like mini stimulation to improve lining but they don’t seem keen. I’ll be seeing my usual consultant at hysteroscopy next week so hopefully can raise with them too. I just feel so frustrated right now and regretting doing the ERA at all.

2021ivfagain · 29/11/2022 00:33

@Gardenlady543

With my protocol for era mock cycle and also for previous transfer, I had a scan two days after trigger. That second day would be to confirm ovulation. So if I triggered on Monday I would have a scan on Wednesday to confirm ovulation has occurred. Then next day I would start progesterone so 400mg cyclogest twice a day and lubion twice a day. Then biopsy or transfer would be on 5th day of taking progesterone.

I hope this helps. The idea is you have the transfer about 7 days after trigger.

2021ivfagain · 29/11/2022 00:35

@Gardenlady543

So if I had a scan to confirm ovulation had occurred on Wednesday, I would start taking progesterone on Thursday morning.

2021ivfagain · 30/11/2022 12:36

@Gardenlady543 Hope your cycle is going ok. You seem to have a good understanding of what to do in spite of their communication errors.

I received most of my results today but my consultant is on leave until 7th December! The era showed I am receptive after 5 days of progesterone so pleased I did not do a day 6 transfer which embryologists wanted me to do last time!

NK cells -I am still waiting for.

Alice- negative result (no endometriosis). Normal

Emma- microbiome with ultra low biomass? They said I should just use vaginal probiotics for 10 days which I am doing anyway, but no percentages.

@Janefx40 Did you do an extra test for Emma and Alice? I know you said you were just told to take probiotics for 10 days but your result was 70% good bacteria. I never had a percentage.

ERA EMMA ALICE testing thread #6
Gardenlady543 · 30/11/2022 14:00

My specialist gave me a call yesterday and I was able to clarify everything. I have my first scan tomorrow. I finished letrozole last night and I had the worst nights sleep, I woke up every couple of hours. Not sure why. I started on the steroids today. Feeling a bit rough.

@Enfys23 I am really hoping your hysteroscopy provides some answers.

@2021ivfagain ALICE looks at bacteria that cause endometritis (similar name but nothing to do with endometriosis) anyway that's great that they didn't find dysbiotic bacteria. But they're saying you need more lactobacillus, I think @seven201 got a similar result, but it was so long ago now I may be mistaken!

I'd recommend you use balance activ for the first 7 days while using the vaginal probiotics, there is one product from USA called vagibiom that has the acid product in the probiotic. Anyway these are my favourite brands:

Florafemme, this is the ultimate vagina probiotic, it has 72 billion bacteria in it and lots of different strains. It is expensive and you only get 6 in a packet:
https://florafemme.com

Physioflor
This has Lactobacillus Crispatus in it which is felt to be a very good strain of lactobacillus . Seems to be a supply issue at the moment as I had difficulty getting hold of this recently.

Vagibiom
This also has l crispus as well as some other strains you can get from eBay, it wouldn't let me order the 30 pack recently so I bought 2 x15 packs. This is the one with the acid product built in.
https://www.ebay.co.uk/itm/Vaginal-Probiotic-Suppository-30-Natural-Vaginal-pH-Odor-Control-No-Parabens-/283702366882?mkcid=16&mkevt=1&_trksid=p2349624.m46890.l49286&mkrid=711-127632-2357-0

Gynolact, this one is good as it has 3 different strains in it
https://www.pharmasana.co.uk/gynolact-vaginaltabletten-8-st-03034436

Canesflor is the easiest to get hold of in the Uk but I feel there are better ones.

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2021ivfagain · 30/11/2022 14:52

@Gardenlady543
I’m pleased they called you. I hope the communication improves and the effects of the medication are not too bad.

I did have ultra low biomass in microbiome for Emma. It detected a small amount of dysbiotic or pathogenic bacteria which was so low it was not significant. Alice was negative though.

Still waiting for nk cells results.

I have been having garlic tablets Allicin in to reduce pathogenic bacteria and doing canesflor with physioflor. I plan on taking them from now until transfer date as that will be about 6 weeks.

Gardenlady543 · 30/11/2022 15:07

Excellent plan @2021ivfagain

Today is my first day on prednisolone 25mg, not taken this before. Kind of feels like my head has been run over by a bus.

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2021ivfagain · 30/11/2022 22:56

I have my nk cells results from
biopsy. A lot of it is in range but some things are low. I read that low or high is not good. IL-18/TWEAK is out of range and low. CD56 is in range but endometrial immune profile is “low activated”. Did anyone have these results?

CailinInUK · 30/11/2022 23:16

Hello,

This is my first post on Mumsnet. I came across it when I googled Emma/Alice test. Despite being my first post, I’m unfortunately quite the veteran in this game.

I’ve been active on other websites such as Fertility Friends and rollercoaster.ie. I’ve read various posts in these threads and am so impressed with the knowledge, determination and support. I hope I can contribute/help too. Here’s a summary of my long, complicated story.

Get this - I’ve never tried to conceive naturally! Soon after I got married in 2014, we found out any children we have would be at risk of a nasty autosomal neurodegenerative condition on a 50:50 basis, from my husband’s side. So we started PGD in 2016 to avoid passing anything on (after over an infuriating year wait on NHS).

Wasted another year with treatment at Sheffield and St Guys as they didn’t do PGS alongside PGD so had two FETs that failed ( presumably aneuploid). Transferred to Care Nottingham for the next two funded cycles. It showed I had a high rate of aneuploid blastocysts. Decided to bank to build up euploid and PGD passed embryos. Collected seven euploids over numerous cycles in 2017/2018 but sadly and unluckily five of these were at risk of the 50:50 condition so we had two to transfer. First transfer in 2019 worked and we have a darling daughter. I proactively did the ERA test which showed I needed one more day of progesterone.

Tried for a sibling in early 2021 but the last frozen blastocyst failed the thaw. Back on the stim bandwagon, aged 42. Managed to get a euploid, risk free blastocyst on my first cycle in April 21 but sadly had an early miscarriage at 6.5 weeks. It was a Day 6 5BC so not the best quality.
Four more stim cycles in 2021/22 and we got another euploid, risk free embryo to transfer in July this year, miraculously, at age 43. I needed this to work so elected to do immunes tests (Chicago) and thrombophillia. Consultant talked me out of Emma/Alice and suggested I just take some vaginal probiotics. I’ll forever regret not doing so but I didn’t want to take them without knowing what my microbiome was like in the first place. I tested for high NK and slightly higher risk of clotting so was put on steroids, intralipids and blood thinners for the FET. Delighted when we got an early positive test, a strong heartbeat at seven weeks, a 12 week scan and a reassurance scan at 15 weeks showed all was ok and we were having a boy. It all got taken away so suddenly at 19.5 weeks when I had some bleeding and a scan showed baby had recently died. This was early November and I’m heartbroken. I’m still awaiting post mortem results but it may have been caused by infection. My swabs tested positive for BV and Group B strep. Since then I’ve taken a microbiome test from Juno (USA) and waiting the results; I’m expecting low lacto. I’ve started taking Zita West Femceive (good bacteria) too, on top of various other supplements for egg quality. As crazy as it sounds at my age, I’m going to do more stim cycles with PGT-A and PGT-M ( was PGD) in the new year asap, it’ll be stim cycle number 13! I’m desperate for a sibling for my daughter and to try to fill some of the void caused by our loss. If we do get another embryo to transfer (big if), I’m considering not doing the immune meds. I think they reduced my immune system so much that I wonder if that increased the risk of infection. I reported a very high resting heart rate at 14 weeks, which in hindsight is a symptom of infection. Sadly the GP didn’t consider this.

If you managed to get to the end of this ramble, thanks for reading!

2021ivfagain · 30/11/2022 23:44

@CailinInUK

Hi. Welcome to the group. I’m sorry you’re going through this. I’m 41 and TTC second baby. I got married in 2015 but didn’t realise my husband had male factor infertility. So we tried but had to do IVF IMSI at 38 and did two egg retrievals and second fresh transfer worked. My son will be 2 this Friday.

This time around has been much harder due to declining egg quality from high fsh. I did one good cycle last year and was batching but every cycle after that was not so good.

I did a mock cycle earlier this month with era, Emma, Alice and nk cells. Never done this before but won’t be making more embryos so this is it. I have 7 day 3 embryos frozen which should make 2 or 3 blastocysts. I’m not PGS testing as not enough. I was 40 when I did this egg retrieval. I have had recurring issues of gardnerella and sometimes candida but have been on strong antibiotics and lots of probiotics. I’m feeling much better. I do recommend Invivo though. They are good with analysing swabs and then have had a good nutritionist Anna Firth who has set up protocols for me. I am on so much it is insane!

I think you are very brave for doing so many egg retrievals. I have done 6 in total I think.

Gardenlady543 · 01/12/2022 09:25

Hi welcome @CailinInUK sorry to hear about to it journey. I think banking cycles is a good think to put the emphasis on. Sounds like you've already looked into the microbiome and know what you're doing with that, I wrote a post here if it's helpful www.reddit.com/r/infertility/comments/rwsxwy/theuterinemicrobiomeemmaalicemenstrualfluid/?utmsource=share&utmmedium=iosapp&utm_name=iossmf

@2021ivfagain I asked Gorgy about potential results, in my notes I wrote that he said if it's low activating they recommend semen around the time of transfer.

I had my CD8 scan today, I did a CB fertility monitor test this morning and no oestrogen rise was detected, my lining is 5.5mm and the follicles are:
13mm
11mm
10mm
3 x 9mm

So it looks like I'm making a few, but lining is a bit thin, I still have some time though. They took blood for LH and estradiol and will call me with the plan this afternoon, not sure when they will want to scan me next or how monitoring will work over the weekend.

It will be a problem if I have a LH surge on Tuesday 6th or they want me to trigger on Monday 5th. As that would mean the transfer falls on a Sunday.

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2021ivfagain · 01/12/2022 09:52

@Gardenlady543

If you trigger on Monday, the transfer would be in a week. So on Monday 7th November I triggered at 7pm. On Wednesday 9th at 2:45pm I had scan to confirm ovulation. Then the following Monday 14th (week after trigger) I had a biopsy which would have been the transfer date.

I found acupuncture helped me, but I also had mild meriofert injections every other day. Could you do acupuncture?

CD8 is still early days. I didn’t start using Clearblue until cd9. I had low fertility until cd14 even though lining got quite thick. When I triggered on cd15, lining was 12.5mm.

The problem with semen is potentially triggering gardnerella again as I’ve been avoiding sex at this time for that very reason. I suppose my husband could be checked for gardnerella and if he doesn’t have it it could work. I don’t know. My consultant is on holiday all the time so I won’t speak with him until next Wednesday! I read that cupping acupuncture and ginseng can also help. My acupuncturist is reluctant to do cupping on me but I might request it. Massage is also good for nk cells and increasing lining.

VenusStarr · 01/12/2022 13:37

I'm still struggling to post. But wanted to say @Gardenlady543 nlady543 I was on fyremadel to stop me ovulating early - is that an option? As @2021ivfagain Said, if you trigger on Monday, your trabsfer should be the following Monday.
Hope everyone is OK. X

Gardenlady543 · 01/12/2022 13:48

I am super confused, my clinic said if I trigger then the next day is -1, if I get a spontaneous LH surge the next day is day 0. And the transfer will happen on day 5. When I was saying this to the nurse she was confused and seemed to think this wasn't right. So I have no idea what is happening. I asked the nurse about something to prevent ovulation and she could only advise about what happens in fresh collection cycles. Is fyremadel routinely used in modified natural cycles? as I'll need to then ovulate spontaneously with a 5000 unit gonsai injection when ready. I also don't have access to this as they never prescribed it. It doesn't look like I'm ovulating anytime soon anyway.

What do people think about my lining, is 5.5 ok for CD8 in this type of cycle?
My first scan in medicated FETS showed:
Day 10 7.4
Day 9 6.4
Day 11 8.2
Day 11 6.6
Day 9 7

@2021ivfagain is it Gorgy that ordered the biopsy? I think you'd need to talk to whoever ordered it, I wonder if you can then arrange to go there with your partner the day before a transfer so they could process the semen and infuse it similar to IUI? That's if it's a medicated cycle, I have been warned not to attempt naturally in the modified natural cycle, given I have a potential of 6 follicles I am sure the clinic are very worried about me doing this!

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Gardenlady543 · 01/12/2022 16:11

Had the call they said my LH is 8.3 and estradiol is 310, so I think this suggests I'm still pretty early in the cycle. They said I should go back tomorrow for a scan and bloods again and if a follicle is over 15mm they will provide an antagonist to stop me ovulating over the weekend. I'm back in tomorrow afternoon for intralipids.

OP posts:
Lori2022 · 01/12/2022 17:19

This reply has been withdrawn

Withdrawn at poster's request

Lori2022 · 01/12/2022 18:04

am I right that cyclogest is fine to go up the back? I’m too paranoid about my microbiome to put anything in the front but obv want the drug to be absorbed 🤞

Gardenlady543 · 01/12/2022 18:13

Yes @Lori2022 cyclogest can be used rectally, utrogestan can't.

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Lori2022 · 01/12/2022 18:35

@Gardenlady543 great stuff!! Thanks 😊

2021ivfagain · 01/12/2022 22:12

@Gardenlady543

That is really bad they are not open the weekend.

Janefx40 · 01/12/2022 22:44

@Gardenlady543 I think your lining sounds fine for day8. I've had similar or worse on Day 9 and ended up with good linings by trigger. For me I can't really tell until trigger/surge because my lining can increase suddenly by 2.5mm that day or it can not increase at all! So really it's all on that last scan for me.

So your transfer should be 7 days from the point of your LH surge which is either Peak fertility/detected by bloods or a trigger. That makes it 5 days from ovulation which should be 2 days later. That was the same when I did a transfer cycle without trigger and two with.

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