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

Not a great scan today, it was a different technician so likely some intertechnician variability: Lining measured 4.8 when it was 5.5 yesterday

Follicles have gone
13 ➡️ 17.3
9 ➡️ 10
9 ➡️ 9.5
11 ➡️ 11
10 ➡️ 10
9 ➡️ 10

So it looks like there is one leading, this one was initially missed and I'm glad I asked the technician ti look again as this size completely changes the plan. It's highly likely I'll be put on fyremadel over the weekend to stop me ovulating and no plan for transfer will be happening with this lining thickness so I suspect they will have me back in on Monday. There is fluid in my uterus that I’ve never had before. I got the estradiol rise on my CB monitor this morning. I'm back at the clinic this afternoon for intralipids.

@Gardenlady543 how are you feeling about it all? Do they say what causes the fluid?

@2021ivfagain @Gardenlady543 thank you both for the welcome, for reading my long post, and the suggestions/links - all very useful.

@2021ivfagain I’ve never had a uterine biopsy for immunes so can’t help with your results, I’m afraid. Happy birthday to your boy today!

@Gardenlady543 sorry your lining doesn’t appear to be playing ball at the moment. Hopefully it was operator variability and it’ll pick up next week. Your lead follicle has grown so usually would have expected your lining to do the same. Not the same, but in my ivf long protocol cycles, my lining reduces a little when I’m nearing the end of stims and it’s near trigger time. I know clinics don’t tend to like to do transfers when there is fluid as it can affect implantation. I don’t mean to be negative but suspect you’re experienced in this field to probably know this already and to not want to jeopardise a precious embryo.

I see several of you ladies are doing modified natural FETs. Any particular reason for opting for this rather than medicated? My consultant has always recommended medicated as he didn’t want to rely on my own E2 and progesterone (‘at my age’!) , however I guess you can supplement, hence the ‘modified’. I’ve fancied modified /natural so will consider for next time, if there is a next time.

@CailinInUK my goodness you have been through it! Good luck.

@Gardenlady543 that does sound like a frustrating scan today. I really hope your next one is better news.

@2021ivfagain yes I think my results might have been similar. I needed an extra day of progesterone and had low levels of lactobacillus, but not super low. My treatment was just 10 days (I think) of canseflor then oral probiotics. My era/Alice/Emma was so long ago now that I'm wondering if I should do a new microbiomme test. Not sure I can face it though! Maybe I should try some of the expensive probiotics gardenlady mentions at least!

Not much news from me. I'm cd4 of a letrazole round. Got a scan next Friday.

@seven201 thank you, yes we’ve been through it alright. This loss at 20 weeks has taken such resolve to not just give up. I thought we were home and dry at 20 weeks. Utterly devastating. It has now made me more determined to not let it be in vain and to try until I take home a healthy baby or my useful eggs run out, one or the other.

Regarding ERA/Alice/Emma, I see Liverpool Womens clinic seem to be one of the cheapest. Do you have to be an ivf patient there or can you do it standalone? My clinic’s charge is 50% more.

@CailinInUK I have done medicated FETs without implantation so it was felt it would be good to consider using my own hormones. Some people with implantation failure do better with modified unmedicated. My lining was 8.4 mm last cycle in my normal cycle so I'm hoping I get there. When I went back for intralipids this afternoon the nurse said they don't normally scan for the first time until CD12 (I'm CD9 today) and my estradiol came back at the low end so they said it's only just starting to go up and it's normal for the lining to only go up when the estradiol gets higher, so they advised I see how I get on on Monday at the time of the next scan. I'm on fyremadel over the weekend.

@thislittlebird the nurse said it's probably just the follicular hormones causing the fluid, she said if it's still there on Monday they will start me on progesterone as planned and bring me in before transfer, as it usually dries up with progesterone. She said it's probably just cervical mucus that has tracked up.

So I at least get to not have constant bloods and scans until Monday.

@CailinInUK im doing modified natural FET this time because I don’t want to take meds if I can avoid them. We’ve had one failed fresh and one failed medicated FET and I detest the effect meds have on my body and the aftermath of a bfn.
I’m much more relaxed this cycle having not taken estrogen so far 🤞🤞🤞

@Gardenlady543 That’s reassuring feedback from the clinic regarding lining and fluid. Rooting for you and may Monday bring good news (catching up on everyone’s history and getting the feel for how to pitch replies based on everyone’s experience).

@Lori2022 I’m with you regarding wanting to avoid meds. I hope this one makes the difference for you.

@seven201

Hi. I was told with era that I was receptive so I didn’t need extra progesterone and it was 113 after takin it for 4 whole days. They didn’t say I had a lack of lactobacillus: they said my Alice was negative for bacteria and emma showed a microbiome with ultra low biomass so a very small amount of bacteria that was very insignificant. I’m already on lots of probiotics and taking vaginal probiotics.

@Gardenlady543 I hope things are going ok with scans etc. My consultant recommended emma, era, Alice and nk cells as these are my last embryos. I’ve never met/spoken with Dr Gorgy.

@Gardenlady543

I’m sorry about the scan but it looks like one is mature. Is there any chance you could have some meriofert or menopur to increase follicles and lining? It really works for me and I’m 41. I’ve also read viagra can thicken lining but it seems a bit controversial.

@2021ivfagain oh sorry, not similar at all then really

@seven201
Well Nk cells are mostly normal but some are out of range and low. Did you have this issue?

I have high activity on nk cells, high tnf alpha and something else too, can't remember.

My treatment plan from my immune clinic (CRP) is humira (2 one off injections), 25mg steroids from just after ovulation or transfer, hydroxychloroquine (this was recent addition after latest miscarriage) all the time, plus the usual ones like cyclogest, aspirin, levothyroxine (thyroid), 3g metformin (polycystic ovaries), clexane (ivf only). From what I gather (and I do find it all very confusing) is that steroids is the main/common one but if you're complex then you might need humira and/or hydroxy. How are you feeling about it? I found it very overwhelming getting my immune results.

@seven201

Hi. That does sound very complex. Fortunately, most of my results for nk are normal but some are low. I don’t have high nk cells at all, so I should absolutely steer clear of steroids. Steroids suppress nk cells; mine need to be activated more as some are low! I’m the opposite of your situation. I don’t know what my consultant will advise. I know that acupuncture and particularly cupping is good for low nk cells.

@2021ivfagain I tried oral viagra in a past cycle and it gave me weird muscle pains, I don't think the vaginal viagra can be sourced in the Uk. Now sure about whether they'd add anything else in this cycle, I think they want to see how it looks on Monday and will keep me on fyremadel for a few days if I'm not quite there. What did you consultant say to do about the NK result? I think they need to advise what you should do and if they're not sure, then would be worth arranging a consult with Gorgy to get his opinion.

@CailinInUK how much are they charging at Liverpool, usually a clinic will charge about £1000 for the ERA and an extra £500 for EMMA ALICE. The cycle is done the same as your transfer cycle will, so if you're going to do a medicated FET, they'll put you on the same meds, they'll need to scan you to tell you when to start progesterone and take a progesterone blood test before you start it.

I imagine some places could cut down the cost if they do it in a completely unmedicated cycle, as you could just turn up for the scan and tell them when you had the LH rise, I think Igenomix might still ask for a progesterone test. The lab want to be satisfied about when the progesterone was present from.

I guess it all depends on why you want to do it, the microbiome can be assessed for cheaper with a menstrual fluid test, so I'd only do EMMA ALICE if you want to do ERA. And if you want to do ERA then it's probably best the clinic who will do your next transfer do it.

@Gardenlady543 Liverpool charge £995 for all three tests together, and £595 for Emma and Alice together. A bargain! It just depends whether they would do it standalone or just for those going through ivf at their clinic. I’ll send them an enquiry to check. My clinic charges £1250for ERA alone and £1440 for the Emma and Alice.
I did the ERA in 2018 before my first successful transfer in 2019 in a mock medicated (pre receptive 24hrs) so would be just interested in Emma and Alice this time. Although preferable to do it in mock cycle, I’d be tempted to just do it in natural cycle to save time. Igenomix accept this, from what I’ve read. (Obviously not for ERA as that needs to mimic exactly.)It would benefit as a scratch too. Are the menstrual blood tests as accurate/representative of the endometrium?
I’m getting way ahead of myself as wouldn’t do these tests unless we get a euploid and low genetic risk embryo to transfer, which is a big ask. 2023 will tell all.

I hope time is passing well for you until Monday.

I should add that my clinic charges £1700 for all three tests as a Triome.

@CailinInUK you could ask your clinic how much just to do EMMA ALICE, this is a lot simpler than doing it with the ERA, you'd just book in to have the biopsy taken and they'd send it off to the lab. I did this for biopsies I had for the receptiva lab and Nk biopsies. The manual is here (page 51) https://www.igenomix.com/wp-content/uploads/2022/04/USALLIERAA004ENNv3.0_ERAEMMAALICEEndomeTRIOOManual.pdf

The menstrual test is the same tissue and interpreted in the same way by looking for bacteria RNA, but it isn't collected directly from the uterus like the biopsy is.

I ended up have 2 x EMMA ALICE with 0% lactobacillus and it took so much time, the mock cycle when the biopsy is taken takes up a cycle then you wait for the result in the next cycle and could end up missing another cycle if it needs repeating or if you can't get the treatment in in time.

I think given the situation you're in right now and the plan for banking, I would probably do the menstrual fluid test, just because you will find out what's going on and get it treated if needed, some types of bacteria can cause endometritis (inflammation of the endometrium) and it's best to get this treated asap. You can then revisit the microbiome if you wanted before you're ready to transfer.

@Gardenlady543 yes, that was the plan - to do Emma and Alice only. My clinic charges £1440 for that v’s Liverpool’s £595.

I agree with you that it’s worth doing the menstrual test now, in case I have lots of work to do to get microbiome sorted - thanks. My next period is the first one since late miscarriage so I might wait until the one after that. I’m still waiting on my vag microbiome results as a starter. I should hear within the next two weeks on that one.

how are you doing?

@CailinInUK that's good, the vaginal microbiome swabs are definitely a good starting point. So you could wait to see if you need treatment from this first. Did you ask your clinic specifically for only EMMA ALICE, it should be cheaper. But they may refuse to do it separately. Dr Gorgy does it on its own for £925. I think if you're just doing EMMA ALICE then going to Liverpool sounds good if they will do it for you.

I'm ok thanks, this is a full on FET with all the immunes and injections. I decided to throw everything at it this weekend, beetroot juice and all!

Just had the CD12 scan and it sucks, fluid is now gone, leading follicle is now 19.4mm but lining is only 4.7mm, this time last cycle it was 8.4mm. I don't think it's releasing estradiol from the appearance of the CB monitor stick but they will check the bloods. No idea what the plan will be, not sure how lining hasn't changed a bit over 3 days.

Oh @Gardenlady543 I'm so sorry are you just on letrozole? My lining doesn't like letrozole so I need estrogen as well. I responded much better to injectable stimulation. That might be worth considering? ❤️

@VenusStarr I have no idea what they will advise at this point. As the follicle is 19.4 it is ready to ovulate but doesn't seem to be making estradiol. The nurse mentioned adding in estradiol vaginally. I just can't believe my lining is half as thick as it was last month. The letrozole seems to have had the opposite impact of helping. I asked if they would be cancelling and the nurse said I still have time.

@VenusStarr when they put you on stims for a FET what dosage do you take and how many days do you do? I have some leftover menopur but only a box of 600 so if they want me to take that I could but not many doses before I'd need to buy more. I suspect they will tell me to start using estradiol, that they will keep me on fyremadel and convert to a medicated but with a trigger in case there is something in that follicle.

@Gardenlady543
I’m really sorry you’re going through this. A stimulated FET cycle is really good. I’m older than you with high fsh but I was in 225 iu meriofert every other day. However, they normally recommend 150iu meriofert every other day. You might need to start with 225iu. My lining got to 13mm when I was ready to trigger. I started doing lh tests in cd9, but started stimming in cd3. So I stimmed cd3, cd5, cd7, cd9, cd11, cd13 and triggered on cd15. As I did oestrogen priming in the luteal phase, it made my fsh very low and that is why my follicles grew slowly but lining was really good. Even when I had ovulated it went down to 12mm. Good luck and keep us posted. If you do stim every other day, you’ll need to go for daily scans as one of your follicles is over 18mm.