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

@VenusStarr nope and I haven't got the treatment plan I paid for with the company that did my tests. Seems like it's lower down in my to deal with list, I'd need the fibroids out first :( and the courier never got arranged for tomorrow so sperm tests could have to wait another week now :(

Sorry @Gardenlady543 i didn't get the email notification.
I'm sorry you've got more hurdles. I hope you can get the courier sorted for next week. Have you looked into where you can get your fibroid surgery? X

@VenusStarr I've had the most frustrating day with the courier issue, they put through a request for a courier for today, but did this late morning which I don't think is even possible! My husband by this time was the other side of the country, had I known there was a possibility of getting the sample off today I would have had it prepared before he left! We timed it for 3 days abstinence so now we have to arrange it for Tuesday next week, so a whole week lost :(

I have started making some phone calls, I need to book in to discuss surgery but haven't done anything about it yet. I'd like Mr Trew to do it, fibroid removal is down as one of his specialties, I know fibroid removal can cause Ashermans syndrome and dont want to be back at square one after removal so would rather he does it if possible.

I have been really tearful and emotional today, I'm not sure why. My therapist wants me to start exploring that my life may end up being child free they've actually had some events on on the Reddit infertility forum this week (it's infertility awareness week) and a couple of the people are child free people, I've actually found their advice really helpful.

It is this really strange existence, there are all these specialists saying keep going, don't give up and then also this potential future where people may actually need to give up. I'm not there yet, I still hope things will work out. There is a recommendation for a book called living the life unexpected, I had a quick look at it last night and it looks quite good.

It's no wonder you're feeling emotional @Gardenlady543 this is a lot to live through and also process ❤️ I'm sorry about the courier, that's very frustrating, especially when things need to be timed correctly. I hope next Tuesday goes smoothly.

I have followed a few accounts on Instagram about living childfree (although I've put myself on an insta-ban at the moment as it's not good for my mental health). Earlier this year, when I was exercising and doing yoga, I did feel more open to other possibilities and it didn't feel as bleak and scary. I'm not in that place now though. I think having this setback has made me realise I'm not quite ready to stop. I wonder if reframing it, rather than thinking about giving up (which can feel like failure), seeing it as choosing a different path?

I think having to coordinate and liaise with specialists and then go through different procedures is hard going, go gently with yourself.

I'm cd10 but still getting a lot of period type cramping, no sign of ovulation yet, which is normally about now. The clinic are going to take a biopsy to test me for endomitritis on Friday, while I'm under. I'm glad they're checking.

How is everyone @StillTrying10000 @Janefx40 @seven201 @Yuliaaa ? Xx

@Gardenlady543 I just wanted to say that I feel for you ❤ It sounds like you are going through a lot. Lots of hugs 🐻

@Gardenlady543 I am so sorry you are feeling this way! I know there are no words to give you some comfort, so I am just sending a lot of hugs and love!
@VenusStarr I really hope you will get some answers on Friday and hopefully a new plan! 🍀
I am okish, trying to enjoy my time off and fool myself I am not thinking about infertility (when in fact I am). I am secretly hoping I have fallen pregnant this month and I'll be that woman that miraculously got pregnant just before FET. (When I know my chances are so slim that I'd rather win the lottery). I am so fed up with this flicker of hope that makes its way in my mind everything month only to make the failure harder to cope with.
I sometimes think about a childless life and its benefits, but most of the time I feel I can't stop trying yet. I honestly don't know what to do if the next transfer fails.
Hope the rest of the ladies are ok! Sending love and hugs to each of you!
💜

Oh @Gardenlady543 I'm sorry you're having a tough time. What are they checking the sperm for? It is really odd how we're pulled in completely opposite directions by different people. Stuck in the middle. Feels like a tug of war sometimes.

@VenusStarr I'm glad you're getting that extra test on Friday.

@Janefx40 have you had the humira results yet?

No news with me. Ovulation sticks still showing nothing, but I'm cd 20. I'm not trying this month so it doesn't matter anyway.

@seven201 I get my results on Friday 6th. Have you had yours?

@Gardenlady543 @VenusStarr sorry it's all a bit shit and sorry I've not been on here much.

@VenusStarr good luck for Friday

@Yuliaaa hoping that you are the miracle lady too !

I decided to weigh myself this morning after avoiding it since January. But I'm pleasantly surprised that I'm 9lbs down 🙂 still heavier than I was before my FET, so a long way to go. I suspect its mostly anxiety driven. Had an awful night again, more dreams, this time I forgot to take a lateral flow and jolted awake thinking it was today. Looking forward to that sedation! 😂

Hope everyone is doing ok xx ❤️

Hi I am new to this thread. I’m reading through but I just thought I would ask for some advice now I’m a few pages in.

ive had 3 early miscarriages. I started IVF. 2 cycles cancelled due to thin lining. I wasn’t responding to the estrogen. Had a natural FET bfn. Just found out today that my second FET failed too.

ive had a hycosy, hysteroscopy (no issues found). Had a nk cells biopsy showed high result to on prednisolone only on a bfp so not had any yet.

i have the gene which shoes I’m intolerant to gluten so given that up for over a year now. I also can’t process folic acid so I take 5mg methyl folate instead.

my husband had a sperm fragmentation issue but then we got 9 good quality embryos in the freezer (7 left now).

i feel like I have either a chromological issue or an implantation issue. My plan is to:

• do era Emma Alice tests or the fertilysis tests. Not sure which one?


• do the karotyping blood tests for me and DH


• pga tests on embryos. Annoyingly I can’t do this as my ivf is currently funded.

is there any advice anyone has or have I missed anything?

TIA

Hi @XjustagirlX I'm very sorry to hear about your FET and losses. I'd say with your nk cells, taking steroids earlier can help. I'm under Dr Shehata and he said the cause of our subfertility is my overactive nk cells, so I start steroids and intralipids 5 days before transfer. Also depends on the dose, I'm on 25mg of prednisolone. My ivf clinic wanted me on 10mg which is quite low.

I'm not familiar with the Fertilysis tests, but I did do the Endometrio. I'd say doing ivf, it would be a good one to do to check your implantation window as well as checking for inflammation and infection.

Have you ever had any of your babies tested? Two of ours were chromosomally normal and Dr Shehata says that most recurrent losses are due to immune factors, so he's advised us not to test our embryos. But he did test ana antibodies and cytokines as part of my blood tests with him. He's not a fan of the biopsy as it just looks at nk numbers, the peripheral bloods look at activity and that's where I have an issue, as numbers are normal. If you can get parental karyotyping, that would be good to rule out.

I think we've narrowed it down for us as an issue with implantation - I have miscarried 4 pregnancies at the same point, all MMCs and my 2 others were chemical pregnancies. But I'll be on a lot of medication for our next FET as I have lost 2 babies on a full immune protocol, so we still haven't cracked it.

X

@VenusStarr best of luck for tomorrow ❤️

@Violette22 @Yuliaaa thankyou for the kind words

Thanks @seven201 I'm having the semen checked for dna fragmentation and a microbiome test similar to the menstrual fluid one I had.

@XjustagirlX hello and welcome :) thin lining is a tricky one, I have issues with it too and I'm wondering now if it's the fibroids I have if not then it's likely a lack of oestrogen in my case, if the latter than medicated FETS should resolve it. The fibroids have worsened though so I need to get them removed.

I saw an article on recurrent miscarriages that recommends:

• Peripheral karyotypic analysis of the parents
• Screening for lupus anticoagulant, anticardiolipin antibodies, and anti-b2 glycoprotein I
• Sonohysterogram, hysterosalpingogram, and/or hysteroscopy
• Screening for thyroid or prolactin abnormalities

So it sounds like your plan covers that, ERA EMMA ALICE would be useful, my friend just had a miscarriage and was found to have ureaplasma which causes miscarriages and isn't checked in the EMMA ALICE, so it would be worth you sourcing a test for that as well.

Thank you @Gardenlady543 looking forward to not feeling so anxious! This wwwk has flown by. How are you?

You also made a good point to @XjustagirlX I think I assumed that the standard recurrent miscarriage tests would've been done. Have you checked your thyroid as well?

I hope you have a nice rest from the general anaesthetic @VenusStarr I may be a bit weird I like the drifting off!

@XjustagirlX just so you know I didn't have any issues with my thyroid before IVF and just got diagnosed with overt hypothyroidism, so it's always worth repeating this stuff.

@VenusStarr @Gardenlady543 thanks for replying.

yes I have had the recurrent miscarriage blood tests for thyroid etc.

@Gardenlady543 on an earlier message I think it was you who mentioned fertilysis tests for bacterial infection. Do you know which test that is? Is it the Advanced menstrual blood testing full micro biome? I thought you had mentioned a swap too but I can’t find that test?

@VenusStarr I had a look at endometrio but that looks like a biopsy which terrifies me I’ve had 3 and they are all so painful for me.

Hi @XjustagirlX yes I had the fetiliysis test, if you're worried about a biopsy then this is probably the option for you. They test for ureaplasma as part of this, this is how my friend found out she had it. It's the advanced microbiome test that you want, it will come with a pot for you to collect menstrual fluid in, you need to collect a few drops at the beginning of your period, you then put the container in the freezer. There is also a swab that you use in your vagina mid cycle just before ovulation. The company use the samples to look for the RNA of bacteria both in the vagina and the uterus. The kit will be couriered out to you and once you have the samples you arrange collection to take it to the lab.

@Gardenlady543 ive spent today researching and I found your Reddit thread so helpful.

with the fertilysis test do you GT a report that says what bacteria I have in. I think you said they don’t give percentages but do they list them out. Also do they recommend the correct antibiotics in the report?

ive got a free consultation booked in for end of May but I doubt the results will be back for then. Is it best to have the call after the results are back? Or do I get a call with the results anyway to go through them?

@XjustagirlX
I've attached what the result will look like, if you have a normal microbiome then they will just say it's normal and you don't need treatment. If it's abnormal then it will summarize the problem and recommend some antibiotics that would be first line in the type of infection but you won't get a treatment plan. If you want that then you need to pay for a consultation with the fertilsysis doctor and he will then send a treatment plan with doses and how long to take, he can also write an international prescription although my friend had trouble finding a place that would accept it. I think if it is a simple issue then you would just be able to get your gp to prescribe and you wouldn't need to pay for the consultation, my friend had a complicated case and needed 3 types of antibiotics so in that case I would recommend the consultation.

The free consultation is just to discuss your case so the doctor can advise what tests would be helpful. I found this really useful in my case as I'd already had 2 abnormal EMMA tests and he was able to discuss the result and the treatment I'd taken.

Since then I went on to have the full immune panel with them and now I'm doing the sperm microbiome and DNA fragmentation through them.

They offer Karyotype testing by the way. If you think you might want some of the other tests in the future I'd advise you to order them now as the courier cost is quite expensive.

You need to arrange for someone to take your blood if you do tests that require a blood sample.

@Gardenlady543 sorry to jump in but I’m interested…do you think it’s worth having the ‘Advanced menstrual blood testing: Full Microbiome’ before an endometrio? I’m due to have a hysteroscopy with endometrio in June (as part of a mock cycle) and want to make sure I’m covering as many bases as possible before FET in a few months. But if they both cover the same thing is there any point?

Got some immune stuff to figure out too. Chicago vs Shehata…something I’ll discuss with our clinic. But you say Fertilysis do this too…is their approach different? Thanks again for all the information you shared upthread too xx

@MyEasterEggs I don't think it's worth doing both, the only issue I can think of with EMMA ALICE is that it doesn't test for ureaplasma, so it was a shock for my friend who had previously had 2 x EMMA ALICE to get the result that she had that, but it was in her vagina as well as her uterus and there are vaginal swabs that can test for it. If you're planning on doing the EMMA ALICE then I would stick with that, if you get an abnormal result and need treatment then you could do the retest with the menstrual fluid test. I originally had 0.00% lactobacillus on my EMMA, treated it, had an unsuccessful euploid transfers did the EMMA again, still had 0.00% lactobacillus, treated it again, straight into another euploid transfer, it was unsuccessful so I sent the menstrual fluid off to fertilysis which would have been the lining of this cycle and it was normal.

My main reason for doing the immune stuff through fertilysis is because I thought I'd have the hla match with my husband and I was right, it seems to be the cheapest place to get the screening, I'm sure other places do more in-depth screening, but it would likely cost a lot more.

That’s interesting on the ureaplasma. I believe you can order that as a one-off urine test with let’s get checked but not sure if that will be robust enough given fertilysis looks at menstrual blood.

I’ve heard of the HLA through Serum. We touched on it back in 2019. What’s the treatment? And what were your other immune results?

@MyEasterEggs

They tested
Th1/Th2 assay- normal
NK cytotoxicity assay- normal
NK profile 56+/16+ 15% (high)
Leukocyte antibody detection panel- result favorable for pregnancy.

When I spoke to the doctor there he discussed LIT and a cycle with immune treatments like neupogen, steroids and intralipids. But some doctors think it can't be overcome.

Hi everyone, just popping on quickly the say that all went well today. Really pleased that he found no issues! No scarring, adhesions, polyps or fibroids 😊 I really was expecting the worst today but he said my uterus was looking good. He has done a biopsy to check for inflammation, but am hoping all is well. He said we could try next month. I think we'll be too late to do a FET next cycle to be honest - have just emailed my clinic coordinator. We may just ttc, we'll see.
I'm off to bed, I kept myself awake on the way home to keep dh company.

Hope you're all OK xx

@VenusStarr Hi there! I am so glad that all went well!! 💜 Weekend is here so you can do something nice and relax!