ERA / EMMA / ALICE testing thread 5(!)

[VenusStarr]

Just setting up a new thread as we're coming to the end of thread 4.

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22

❤️

@VenusStarr good luck. Just try and get through the day. One step at a time x

@OrangeBengal thanks for the welcome and advice. Yes there is definitely a wealth of knowledge in this group 😀

@VenusStarr Sorry to hear you've had such a tough week and you're so anxious but perfectly understandable and any of us would feel the same. I have everything crossed for you that it comes back positive. Will be thinking of you today 🤗

Thinking of you today @VenusStarr.

@DEIVF welcome!

Where does everyone buy their femdophilus 5 billion one that needs to go in the fridge please? Thanks

@MyEasterEggs hope you don’t mind me jumping on the thread. May I ask how long you waited for an appt with Mr Ramsay? Considering going to see him but we don’t live in London but I saw you said it was just one days worth of appts/testing. Just not sure at the moment as we already have naturally conceived children and only 1/4 SA results have come back poor, the rest have been fine. Don’t know whether it’s worth all the expense of seeing him or if we would be better off waiting to have a repeat SA in 2 months time to see if it’s gone back to his normal kind of numbers

@Anonbaby it took us about three weeks to get an appointment but we got in touch early January and I think it was a quieter time. My partner took the train down from Edinburgh and came back same day. The appointment itself probably lasted an hour at most then he went off to give semen and urine samples.

I have a naturally conceived 8 year old and have had six miscarriages since. All natural conception. This is my first IVF pregnancy. We did ICSI due to SpermComet results and we wanted to make sure we had a euploid embryo. His basic semen analysis has always been good so that’s not necessarily an indicator of great overall sperm health.

Sending lots of love your way @VenusStarr 💛

@MyEasterEggs thank you for your reply. It’s all so strange isn’t it how it can work and then all of a sudden not work ever again. I’m not sure about ICSI so I just don’t know if we will go ahead

It's negative 💔 dh wants to stop trying. I'm don't know what I want. Part of me is done too.

@VenusStarr I’m so sorry to read this update. You must be feeling so raw so maybe try to put decisions about next steps to one side, just until you’ve taken some time to heal as best as you can from this cycle. I can’t even begin to imagine how it’s been for you 😞

@VenusStarr oh shit, I'm so sorry. There aren't any words that can help. Let yourself be furious if you need to. Have a cuddle with dh and don't rush any decision making.

So sorry @VenusStarr. The right decision for you both will come in time.

@VenusStarr

I’m so sorry. Take some time for yourself. IVF is so hard and you might just need a short break from it before you decide what to do next.

I'm so sorry @VenusStarr I don't know what to say it's just completely and utterly shit. ❤️

I’m so sorry @VenusStarr we was all really rooting for you. Thinking of you!

I’m so sorry @VenusStarr Sending so much love to you both. Grieve this loss and don’t think too far ahead right now. Take care xx

@VenusStarr oh my love. I'm so so sorry. I'm so gutted for you. All you can do is survive the next little while as you grieve. It's so hard but it's not the right time for either of you to make big decisions. Sending you so much love and always thinking of you xxx

So sorry @VenusStarr ❤️

I'm so sorry to hear this @VenusStarr take the time you need to deal with this, have a complete break from IVF and then when you feel the time Is right, make decisions about your future plans that are right for you both. Thinking of you xx

Thank you everyone 💓 I'm ok. I slept better last night for the first time in weeks. We did have a talk, not making any decisions yet but definitely giving ourselves some space to concentrate on us. We're going to book a holiday. I need to get my passport as it expired 2 years ago! 🤦🏻‍♀️ so that's the priority. I think focusing on what we need as a couple and for me to focus on me as well is needed.
We baked a cake together last night which was fun 😊
Love to all xxx

I'm really sorry you find yourself facing these tough decisions @VenusStarr I know you had some time before going into this cycle and the stakes were very high for your recent transfer.

Cake baking, a good nights sleep and a holiday sound excellent! Do you have any ideas where you might travel to?

I started reading a book called Living the life unexpected by Jody Day that seems to be aimed at this kind of life uncertainty, may be worth having a look into it when you're feeling up to it?

My friend has found herself in a similar situation to you she went to see a herbalist and is going to give that a go for a few months which sounds like an interesting route to pursue after having spent years going down the medical route without success.

@VenusStarr a good nights sleep and baking a cake sounds like a lovely evening to me! It sounds like you're doing the right things for you as a couple and having a holiday is an excellent idea to just get away, relax, recharge and reconnect as a couple. Your relationship can take a back seat when you're on this journey and you can lose yourselves. I'm sure over the next few weeks and on your holiday you'll remember who you are again and reconnect as a couple. There are a few options available to you as and when you decide to think about this again. I've been where you are right now and it's tough. But we took a step back like you did and we decided to do the donor egg route. Enjoy spending time on yourself and with your partner and having some fun again without any distractions 🤗

Hi All. First time poster on this topic and still relatively new to this journey. Apologies for posting off the back of what looks like some bad news here for @VenusStarr (don't know your background/full story but am very sorry) but looking for a sounding board off the back of some recent results and hoping I may have come to the right place.

I will try and summarise my journey so far as briefly as I can.

My husband and I, both 31 with healthy BMI's/ non smokers, have been trying to conceive for a year now with no even slight whiff of a BFP. I have regular periods (albeit on the slightly longer side of 33/34 days) and we've both had a number of tests (which we know we are very lucky to have been able to pay for some privately as NHS waiting list is so long) including ultrasounds, blood tests, hycosy, vaginal microbiome for me and semen analysis for DH.

There are three potential issues at the moment that have been flagged 1) my thyroid/TSH is out of whack (underactive) and I've just started Thyroxine 2) although I am ovulating my lining looks to be breaking down too soon post ovulation indicative of low progesterone and 3) my vaginal microbiome results (what I wanted to speak to you all about).

Appreciate I am nowhere as far along in my journey as you all, nor have I had the ERA/ EMMA / ALICE testing yet but I have not found any other forum that talks about such microbiome results. Mine were only taken via a vaginal swab/PCR (the Invivo Vaginal EcologiX) and although I good levels of Lactobacillus I have also got raised levels of a lot of bad bacteria - Gardnerella, Prevotella Bivia, Strep B and Ureplasma. My fertility acupuncturist that suggested this test to me seems to think this is likely the reason I am struggling to get pregnant and causing the progesterone/thin lining issues. Apparently the combination of bad bacteria I have is really tricky to treat even with antibiotics+probiotics and my DH also needs antibiotics+probiotcs to stop us re-infecting one another thereafter.

However we are struggling to find a test that would show that my husband is also carrying such bacteria. Our accupuncturist has mentioned the Urologist Doctor Ramsay as being amazing at treating for things like this and to try and arrange for an appointment with him to talk about treatment.

It all feels very overwhelming and scary and possibly like we will never be able to get rid of this bad bacteria and conceive - naturally or otherwise .

Have I come to the right place, is any of this what is found and treated via ALICE testing? Any success stories or possible thoughts on next steps? Including treatment of yourself and DH.

Thank you in advance.

Hi @ER12 welcome :) you have done a good range of range of tests. I was diagnosed with hypothyroidism during my journey, annoyingly after 4 transfers. And had a quite a frustrating time with the microbiome. You certainly have a range of dysbiotic bacteria, you may need to look at targeting with more than one antibiotic.

Some of the bacteria you've had detected are associated with endometritis (inflammation of the endometrium).

Ureaplasma can be a nasty one to have, my friend was treated at this clinic for it: https://clarewellclinics.co.uk

What I would suggest is that you try initially to target treatment based on what's been found to date and that you repeat the vaginal swab before escalating up to a more invasive/expensive test. It is highly likely that your uterine microbiome will be similar to your vaginal microbiome. So there is not much point in doing the EMMA ALICE or menstrual fluid microbiome test until you have some indication you are on top of things after treatment.

You can test your partners semen with this test:

https://www.fertilysis.com/tests/male-infections/fertilysis-male-microbiome

I wrote a post about the microbiome on a different forum that you can see here:

https://www.reddit.com/r/infertility/comments/rwsxwy/theuterineemicrobiomeemmaaliceemenstrualfluid/?utmmsource=share&utmmedium=iossapp&utm_name=iossmf

Wow., thank you @Gardenlady543 that is all such helpful information. I will have a full read later on your reddit forum. I have some further questions below if you don't mind please:

Some of the bacteria you've had detected are associated with endometritis (inflammation of the endometrium).
Is it possible to have this and it be asymptomatic? I always assumed endometritis is associated with painful/heavy periods. Also none of my ultrasounds have indicated I have this. Could this be a separate issue that I should explore for fertility? Is there even any treatment for endometritis?

Ureaplasma can be a nasty one to have, my friend was treated at this clinic for it:
Thank you. Do you know if she managed to get rid of it via antibitoics in the end?

What I would suggest is that you try initially to target treatment based on what's been found to date and that you repeat the vaginal swab before escalating up to a more invasive/expensive test. It is highly likely that your uterine microbiome will be similar to your vaginal microbiome. So there is not much point in doing the EMMA ALICE or menstrual fluid microbiome test until you have some indication you are on top of things after treatment.
If I manage to clear the bad bacteria from the vagina, what would be the rationale for doing the further EMMA ALICE tests you mention? To see if some bacteria is also lingering in the uterine and possibly treat further?

You can test your partners semen with this test:
Sorry for the dumb question but is there a reason why the prices are in Euro's? Is this not a UK testing/company? Do you know how accurate they are in picking up similar bacteria from the vaginal microbiome?