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ERA EMMA ALICE testing thread 7

1000 replies

VenusStarr · 23/02/2023 22:00

Hi all. We're on our 7th thread! Really hoping for some more positive news in the coming months.

OP posts:
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18
Faithhopelove83 · 30/03/2023 18:17

@2021ivfagain No worries, please ask away! So I've not had the EMMA, ERA, ALICE tests, as they've not been recommended by my clinic. Instead, Mr Ramsay prescribed me and DH antibiotics and put me in touch with nutrionist Melanie Brown, and I had the Invivo Clinica vaginal microbiome test, which Melanie interpreted and then she gave me a personalised probiotic protocol. I took -
Symprove (2 bottles each, for me and DH)
Zita West Menceive (for DH)
Zita West Femceive (female probiotic with L.Crispatus - safe through IVF and pregnancy)
Invivo Clinica Bio Me Femme UT (excellent female probiotic for UTI, E.Coli, E.Faecolis - safe through IVF and pregnancy)
Invivo Clinica Bio Me Prebio PHGG (prebiotic, safe through IVF and pregnancy)
Canestan Canesbalance BV Gel (finish course before doing Sangella gel)
Sanareva Sangella Intilac gel (balancing PG intravaginal gel, provides healthy environment hospitable to healthy lactobacilli which encourages them to grow - taken in the morning for 7 days)
Sanareva Physioflor Vaginal Flora and Canestan Canesflor probiotic vaginal pessaries (alternated nightly, in conjunction with the Sangella in the mornings).
The last 4 (i.e. all the vaginal ones, as opposed to the oral ones, need to be stopped 5 days before EC/ET/FET.
I repeated that protocol around 5 months later, of my own accord and, since then, I've been taking Optibac Intimate Flora for Women - 2 per day - throughout this FET cycle (it's safe in pregnancy).
I didn't get help from my clinic re probiotics either, but they know I'm taking them and are supportive. They weren't helpful after we got the sperm DNA frag results either, which is how I ended up finding Mr Ramsay (and then through him, Melanie) for myself.
I hope this helps x

Faithhopelove83 · 30/03/2023 18:24

Thank you so much @seven201 🙂. I know, it's amazing after all the worry with progesterone levels being low at transfer and having to be rescued last minute! The line is very strong and Clearblue Digital says 2-3 weeks. It could indeed be twins! (eek). I need to reign myself in and not get ahead of myself though. One day at a time.

Sorry @Enfys23 , meant to also say - scan is 2 weeks on Tuesday (if I put it that way to myself, it doesn't sound so long to wait!)

Gardenlady543 · 30/03/2023 18:25

Doctor still hasn't called so I'm sat here upset not having a clue where I stand. They said the clinic is shut now and the doctor may still call as he was at his desk when they last spoke to me and all I can do is wait. As he won't be in tomorrow, if he doesn't call in the next few minutes then I will have no idea where I stand and just think given how complicated my case is and how unexpected todays finding is, leaving me with this unexpected result for this long without saying anything, is just cruel :(

clhiu · 30/03/2023 18:29

Thank you all so much for the well wishes and thoughts ❤️

@Faithhopelove83 first of all, congratulations on your BFN, I hope this is the one for you, bur totally get the worry when you’ve suffered previous losses. Thank you so much for sharing your own experience with your own scares, it sounds like it may be more common than I realise after-all. Glad the outcome was good.

@Gardenlady543 I am really sorry to hear about your mum’s young passing from cancer and I totally get why you’d be extra watchful. Both my mum
and her sister had breast cancer although both in their 60s and they are doing well, but off the back of that I check my breasts obsessively and get to have one mammogram per year.
I genuinely feel frustrated for you now hearing about your cyst. Sometimes with the constant set backs I wonder if the universe is trying to tell me something, to give it up, that it’s not meant to be. I hope they can still salvage this cycle otherwise when I get home later I’ll do an extra scream inside a pillow on your behalf, I literally don’t know where to bang my head sometimes.

turns out that my appointment tomorrow may not even happen now and I may not even find out for sure up to 10am. If it cannot happen tomorrow the next available date will be in 2 weeks as this particular specialist sonographer only operates in this clinic Fridays and next Friday is a bank holiday. I literally want to do nothing by screaming right now. 2 more weeks for a scan and then longer if a biopsy is needed I don’t think i can deal with the levels of stress.

clhiu · 30/03/2023 18:31

I am sorry I realise I’m bringing a lot of negativity to this chat, people have enough on their own plate. Thanks for putting up with it, I’ll try to tone it down x

Gardenlady543 · 30/03/2023 18:33

@clhiu it is fine to be negative here and I will join you in a mutual "FML, why me? scream" still no call, just feel like I'm a piece of meat. It's hard enough having gone through years of this, a bit of care and compassion and timely communication is a basic right.

Faithhopelove83 · 30/03/2023 18:41

I'm so sorry @Gardenlady543 , that is indeed cruel and so upsetting to be left like that. I hope the doctor calls you soon x

Faithhopelove83 · 30/03/2023 18:45

Thank you @clhiu , I really appreciate it, especially when you've so much on your plate at the moment. I'm so sorry your appointment tomorrow has now been thrown into the air. I really hope it can still go ahead as planned, so you don't have to wait 2 weeks x

Enfys23 · 30/03/2023 19:15

Thank you @Faithhopelove83 that’s really helpful, no worries, I am in north west. I might ask the clinic about immune testing ahead of review on 8th April in case any can be done before then. That’s interesting what you said about DH as we had the comment “sparkling” at initial tests for DH which sounds similar to what you both had. It’s strange it’s my DH having to push for it! The clinic haven’t suggested anything at all. It’s a lot of money but I’d rather do all the tests now like the karyotype then go through more BFN transfers and regret not finding things out sooner.

@Gardenlady543 that is just bloody rude. I do feel sometimes that they lose sight of the person and what we are going through sometimes when you end up chasing and not hearing. Virtual hugs

@clhiu I really hope things work out for tomorrow. Don’t worry about the negativity we all bring plenty of that here at times when we need to!

2021ivfagain · 30/03/2023 19:19

@Gardenlady543 The communication is terrible. My clinic is quite good for communication at present. There have been delays but they usually get back to me. Does your clinic close early for Easter? Is there a mobile number to phone? I know if I have an urgent query I use the out of hours number if the clinic is closed.

Gardenlady543 · 30/03/2023 19:20

Doctor called, he said take the trigger tonight and it's the best chance to get rid of the cyst and he thinks I'll get a period in 2 weeks, I said how when my lining is 3mm and I'm currently bleeding and he said it will happen as my body is making estradiol. He then offered a scan Tuesday and I said yes, because I don't want to turn up in 2 weeks and it's still there. But then the line cut off so tomorrow I will need to try and sort out booking in a scan on Tuesday and getting another trigger sent to me, as I'll need to use the trigger I have to get rid of this cyst!

CailinInUK · 30/03/2023 20:08

@Gardenlady543 sorry to hear about your scan but glad the Dr called you and and you have a plan. Good shout to get a scan on Tuesday.

@Faithhopelove83 thats really great news, I hope the next couple of weeks pass fast and your scan goes well. Thanks for sharing your probiotic protocol too, I’ve noted it.

@clhiu I hope your scan goes ahead tomorrow and results are good. Must be so hard to get close to transfer to have this curveball. But your health is so important so good to get it checked out.

@VenusStarr I hope you’re both home or on your way home now. You’ve been through such an ordeal.

@Enfys23 I hope you get your immune tests sorted. Re DNA fragmentation, I believe the Zymot chip sifts out the sperm with this. It’s £220 at my clinic so good value in my opinion. I added it to my last cycle and will add to the next.

I had my review today following my stim cycle. I don’t have the PGT-A and PGT-M results yet but wanted to get a review in before my next Day 21. Assuming i have to do another stim cycle (highly likely) and after debating short (with and without EPP) v long protocol, we decided to stick with the long. I’ll go for a scan just before I start taking Synarel on ‘Day 21’ (currently CD4) and again CD 5-7 to check my AFC as I raised the general concern about potential for over suppression. If AFC ok, I’ll proceed with stims. Thanks @2021ivfagain and @Faithhopelove83 for sharing your protocol experience. I’ve done 13 stim cycles now so far, two short, one natural modified and ten long protocol and have had the best results with long.

CailinInUK · 30/03/2023 20:14

@Gardenlady543 Ive looked further up the thread. I’m so sorry you lost your mum at a young age. You really deserve a break right now and I hope things turn around.

thislittlebird · 30/03/2023 23:05

@Gardenlady543 it’s not being sold at all? Wow, that seems strange considering how much must have been ordered here. Someone on Reddit told me it was not only the UK but the whole of europe.

Sorry to hear about your mum, all of this stuff just makes it very stressful and upsetting. And sorry you had a bad baseline scan too, it’s such a rollercoaster. I’m glad the doctor got back to you eventually. Seems strange that you’ll have a bleed in a couple of weeks but he seems confident you will?

@Faithhopelove83 congratulations on your BFP! I know it’s only the first hurdle but it’s a positive start. I’ll read more of what you said once I have a phone plugged into charge, it’s about to die. I’m ok with Gonal f, I’ve had a good response to it and an ok response. They wanted to try me on something new but at least I know it’s been ok for me before.

thislittlebird · 30/03/2023 23:09

@Faithhopelove83 I should add that I’ve requested natural modified all the way through. I don’t really want to take additional estrogen, I was not allowed to take the pill because I get migraines, and have a family history of stroke. So I’ve requested natural modified ivf and have had implantation one time, so I don’t see a reason to change? Maybe I’m crazy and I need a medicated cycle, but I’ll keep trying natural modified for now.

thislittlebird · 30/03/2023 23:59

Thanks @Enfys23, hopefully my baseline scan in the morning will all be ok. Sorry to hear about the extended migraine, I just had my regular hormonal one the last couple of days, coming out of it now. They’re horrible. DNA frag is a good idea, we’ve had our second recently which at least rules out that issue for us.

@clhiu your downer is totally understandable and you shouldn’t feel bad, that all sounds very stressful.

@Gardenlady543 your history with the breast clinic sounds super stressful too. I’ve not had to go there for a number of years but can’t say this process doesn’t make me think about it. The older I get the more concerned I am about my health and the ivf medications.

thislittlebird · 31/03/2023 00:04

@VenusStarr hope you’re both home or on your way home.

@CailinInUK i’m not familiar with PGT-M, but we’re possibly having PGT-A if we have any embryos from our next cycle.

kerrym87 · 31/03/2023 10:35

@Enfys23 I was looking for northern region and I think there was a clinician Chester that does immunology, I also found clinics in North east which do some of the immune testing but not all, if this current cycle doesn't work think we're going to do some bits up here in collaboration with Dr gorgy as he said he has done this before. He does all stuff he needs to do in one visit then can liaise with local clinics if that's any help x

kerrym87 · 31/03/2023 10:41

@clhiu moan away! Helps to get it out and we're all here for ups and downs, if anyone gets fully how hard this is it'll be the lovely ladies on here.
@Faithhopelove83 cautious congrats, totally understand you want to protect yourself with what you've experienced, I'm a neonatal nurse and get the feeling if I get my BFP I know too much and I'm gona be a crazy lady and be paranoid about everything the whole time......

VenusStarr · 31/03/2023 11:37

Hey everyone, we're home! 🙌 🥰 had lots of lovely cat cuddles. Dh is so much better. Now got to navigate the NHS as yesterday the GP was less than helpful.... 🙄 luckily we now have his surgical report, albeit in Spanish! I'm sure it'll be resolved but its the stress and admin associated. Luckily years of infertility admin and stress have prepared us, so up for the fight.
I can't remember if I said but he also was notified whilst we were away that he is at risk of redundancy (it will happen) so got that to contend with too. Had a wobble earlier, think it's a delayed reaction to all the stress and worry 😢

We've decided on top of that to still ttc, so superovulation is going ahead, not with gonal f as I don't have it, but got letrozole. He feels up to it and suggested we carry on. Af is rumbling so will start meds in the next couple of days.

@Gardenlady543 I am so sorry to hear about the cyst. Honestly, I feel like the universe just keeps handing out crap to some of us ❤️ I really hope the plan of triggering helps deal with it and you can continue with the next cycle with no complications.

@Faithhopelove83 gentle congratulations 💗 completely understand your caution but I'm keeping everything crossed for you.

@seven201 I hope you're coping OK and your little one is growing safe and well

How are you @Enfys23 ?

Thank you @thislittlebird are you doing a fresh collection cycle? Fingers crossed for you 🙏

Thank you @CailinInUK I hope you get your results soon and things are in prep for this next cycle. It sounds full on but I hope you're getting on OK with everything.

@clhiu thinking of you today

@2021ivfagain hope things are OK with you.

Sending love to all ❤️

OP posts:
Sar1010 · 31/03/2023 12:25

Hello,

I hope it’s ok to join in the middle of a thread. But I’m just looking for a bit of solidarity or connection with people going through something similar. My friends are either not interested in getting pregnant or are incredibly and frustratingly fertile, so I lack the ability to chat about these things freely with anybody else.

I’ve been TTC for 3 years
2 CPs
started IVF last month
FET #1 failed
we have 3 normal tested Frosties left
and my consultant (at Evewell) has suggested ERA, EMMA ALICE this next month.

I feel really torn. I really don’t know much about it and feel so upset and frustrated that this is just another obstacle but then I’m also glad that there are more tests to be done to work out why I’m struggling with implantation.

I just wanted to say hi really and a big virtual solidarity cuddle to all of you!

Ive changed diet in the passed but it started to stress me out. I’m now wondering if I should change my diet (take out carbs and sugar, I already don’t really drink) for the test cycle and next FET.

supplements I take ATM are folate 1000 (first blood test at clinic came back that I had dramatically low folate) and vitamin D. Would love to keep the amount of supplements low as this just causes me stress too but I am interested in hearing if anyone has had any success with implantation after a certain vitamin or procedure.

sorry for huge message in the middle of your thread. But I was driving myself up the wall!

♥️

thislittlebird · 31/03/2023 13:32

@VenusStarr glad to hear you’re back! We did super ovulation for a while and it was fine, low stress compared to ivf so fingers crossed it won’t be too much hassle for you. What terrible timing on the redundancy news too, hope he’s doing ok.

Yeah it’s a fresh cycle. I’m bricking it, don’t even know what to expect since we had one quite good and one very bad cycle. Did my baseline scan this morning and start Gonal F 225 tonight.

Also trying to exercise and watch what I eat, which I will keep up as much as I can but packing protein in during stims is really hard.

@Sar1010 welcome, feel free to join us! Other people might be better placed to advise on the EMMA ALICE ERA, I’ve not had them but did do a microbiome test remotely with a Greek clinic called Fertilysis that @Gardenlady543 recommended.

clhiu · 31/03/2023 15:43

Good afternoon and first of all the good news, the specialist scan this morning showed no suspicions features in any of the 3 nodules therefore they're automatically rated benign and no further action or testing required. I am so relieved and glad that the transfer cycle can actually go ahead.

@Gardenlady543 you are right, good communication costs nothing, especially when it's your job to work every day with people in such a stressful situation who are literally hanging on updates ad information. I hope the proposed course of action does work as indicated and you can start the cycle in two weeks as your consultant is suggesting. To a better start next time!

@VenusStarr yayyy!! Glad to hear you've final made it back home, your DH is feeling better and you can start TTC again. Sorry to hear you have the added worry of redundancy, I hope it doesn't happen, IVF is expensive enough without financial hardship on top of that, I hope things work out for the best in that sense. The company my DH's worked 7 years for went bust at the end of last summer just has we had our 4th MC and were gearing up to start IVF and it wasn't an easy thing to navigate, we were lucky to have support from our families.

@thislittlebird good luck with the new cycle.

@Sar1010 welcome to the thread. Are your 3 frozen embryo PGTA tested? When, at the end of a PGTA IVF cycle, we ended up with a single euploid embryo to transfer and after 4 miscarriages from natural pregnancies, my consultant recommended EMMA, ERA, ALICE and NKC. I initially felt frustrated at the idea of the additional costs and having to put the transfer back two months to allow for the ERA mock cycle, but decided that given we only have one shot at a transfer, we might as well be thorough and that if I didn't and the transfer didn't work, I'd always be wondering.
I cannot tell you if it has worked or not yet as the transfer cycle hasn't actually started, but if you have 3 left and don't feel convinced by the possible benefits or have concerns around the costs, it may be worth trying one more time without and leaving it for the next transfer in case this one still doesn't work.
The tests themselves are fine, although when they did the biopsy I was actually asleep as my consultant recommended a hysteroscopy too so they did it all at the same time when i was under heavy sedation.

Gardenlady543 · 31/03/2023 15:45

I am exhausted, I took the trigger last night and checked and have a LH surge this morning so hopefully I will ovulate this thing out. I have a scan Tuesday to check. Currently having a period, while ovulating, while also having HCG in my system. So feeling the effect of these things that don't usually all happen at the same time. A manager has just sent something that has upset me and now I'm a wreck, so I replied that the way they have phrased it has upset me, like I'm just sick of people talking to me like I'm a soldier on a battlefield when I'm a vulnerable woman right now. Anyway think I could do with sleeping for a week, bet @VenusStarr feels the same! Welcome home by the way, glad you are back!

Hi @Sar1010 I wrote this on the microbiome that will tell you about EMMA ALICE www.reddit.com/r/infertility/comments/rwsxwy/theuterinemicrobiomeemmaalicemenstrualfluid/?utmsource=share&utmmedium=iosapp&utm_name=iossmf it's worth looking into. The ERA I'm not so sure of, a few of us here have done it, I got inconsistent results and ended up getting further along when I ignored it and did a modified natural FET.

I listed my supplements not that long ago, I take vitamin d 2000 units, vitamin b complex (I'm vegan), omega 369 but not in FET as I use intralipids then, ubiquinone 200mg, methylfolate 1g (worth looking into as a lot of people have the MTHFR mutation), a probiotics and a multivitamin.

@thislittlebird my specialist said the pharmaceutical company has taken it out of the market and they usually then reintroduce it again in a different form of some sort but that probably won't happen for a year or so, so all you can do is buy 10 packs of Meriofert 75units and use multiple injections of 75 and waste any outside of the 75 times table.

@clhiu did you have the appointment?

Gardenlady543 · 31/03/2023 15:46

Cross posed @clhiu that's great news :)

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