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

Oh @Yuliaaa that's very worrying. I'm glad you don't have long to wait for your mri, but I appreciate 2 weeks is still a wait. I'm sending you lots of love ❤️

Thank you @seven201 @Janefx40 @Gardenlady543 I'm provisionally booked in for the hysteroscopy at the end of the month, just waiting for crp to confirm there's an anesthetist available.
I'm struggling at the moment, sorry not to message everyone. I hope you're all doing as well as you can xx

Thank you @VenusStarr. I am so sorry you are struggling. Sending you lots of hugs! 💜

@VenusStarr sending you love ❤️. I can't help I know but I send you all my love and care. Always here x

@Yuliaaa oh that must be scary. Drs are usually pretty good at knowing when it's potentially cancerous so hope it's a positive that she thinks not. When my Mum had breast cancer the GP knew immediately (although he didn't say) but she was in the next day for a scan. I will have everything crossed x

@Loz2467I'm so sorry for your loss. For immunes you need specialist blood tests and possibly a biopsy although the leading immune doctor don't seem to bother with the latter too much x

Love to everyone xxx

Hey everyone again,

I know I’m coming into this late and maybe I didn’t explain myself well before. I have experienced my own losses and I’m worried I have chronic endometritis but I am scared of having a biospy. I’m just looking for some hope from any who may have successfully cleared chronic endometritis with antibiotics ? I’m worried if I do have it about how hard it seems to be to clear. It would be very reassuring and hopeful to hear any success stories …
Sending love

X

Thanks for your help @Gardenlady543. And forgot to answer to you previous post that yes I did the acid thing like you suggested, I am taking vaginal probiotics every other day (doctor's recommendation) and oral ones on my on advice.

I am really sorry to hear that you have had new obstacles on your way. How do you plan to proceed at the moment? I hope the immune protocol suggested by Fertilysis helps. Will they write you a prescription or can you write ones for yourself sinne you are MD, how does it work?

I have found yet another place from Greece that has 5 star reviews everywhere. It is called IVF serum, they also have their own microbiome test which only costs 300 euros, it is quite extensive as well. I am planning to book a consultation from them and we might even travel there for more comprehensive help on our situation. It seems like Greece is somehow quite advanced in fertility things, I am quite surprised about It.

Hello everyone
I’m new here and I’m just learning how to use it properly.
I was hoping to ask a few questions about EMMA/ALICE. I am getting it done next week and want to know if anyone could tell after the biopsy how soon do you need to wait till you can start next transfer . I’ve heard some day straight away but don’t you need to wait to see if you have endometritis and if you need antibiotics?
Thank you all in advance 💕xx

Hi @Babydustt12 I was lucky in that the tests showed everything was normal, so in theory I could have planned a transfer quite soon after. But my period started a few days after the biopsy, so that's one thing to factor in. My results came back quickly, within a week, but I know others have been longer. And depending on the treatment you might need, I'd probably hold off until you know your results.

@Rainb23 I'm sorry for your losses. I didn't have chronic endomitritis, so I can't help, sorry. The biopsy is not pleasant, I'll be honest. But it's over fairly quickly, they tend to count you down.

As an aside, I'm paranoid that I'll have developed endomitritis after my last loss and now with this scarring. I was thinking of asking them to take a biopsy when I have the hysteroscopy. Does anyone know if it's a thing? Or would the see inflammation anyway? I can't decide if I'm being totally irrational, or the concern is warrented. I just don't want to jeopardise our last embryo transfer or have regrets. Maybe they can just prescribe me the antibiotics anyway. What do you think @Gardenlady543?

Thank you got all the support, just trying to contain this anxiety. Hope everyone is OK xx

That sounds sensible thank you.
As long as I am aware they can do a biopsy during a hysteroscopy but it needs to be a clinic that does this test and also needs to be a certain time of your cycle. Definitely worth discussing with your doctor and wish you all the luck xx

@VenusStarr I had the same concern and I was told they could detect endometritis during hysteroscopy. If it makes you feel safer, speak to your doctor about your worries. I always make a list of things to ask her and we discuss it together. xx

@Janefx40 thank you. I am trying to be positive for the time being, otherwise I will lose it. Hugs! 💜

@Rainb23 your consultant could give you antibiotics but the problem is they may not be tailored to the type of bad bacteria (if any) you have so for this reason I would think you need the biopsy. I have had the biopsy done x3 times (1 ERA and x2 ERA/EMMA/ALICE and it is honestly fine - very little bleeding and little to no cramping afterwards. It’s also the only way to know if you have chronic endometris or just general bad bacteria/ low good bacteria. I don’t think any of us on this thread have had chronic endometris - there was definitely a specific thread on the board about it though if you search for it.

I had all bad bacteria and no good bacteria. After treatment I had 75% good bacteria and the rest had bacteria but no dominant strain of bad bacteria. I went ahead with a transfer that worked but I also had found ky exact implantation window for that transfer, was on steroids for the first time for immune issues and was on progesterone in oil for the first time to address low progesterone. So I can’t say whether it working was down to addressing the problems found by the Emma/Alice alone.

@Violette22 I’m in Ireland and Serum are a popular clinic here. I have an online friend who got pregnant with them after multiple failures here. They are definitely worth a look. I think a girl called penny is the coordinator and apparently very nice.

@VenusStarr @Gardenlady543 @Janefx40 @seven201 sending you all much love. I’m sorry to hear about all the hurdles cropping up. Hoping for better news for you all soon. Xxx

@Yuliaaa I'm sorry to hear about your breast issues, I have a BIRADS3 as well, I had a biopsy last year and need to arrange another ultrasound soon. I hope the MRI comes back with reassuring results.

@VenusStarr really sorry to hear you are struggling, that is completely understandable. I think there are a few options for looking at the microbiome, you could ask if they can take the sample, this will likely depend on where you are in the cycle and whether they can send off the sample, I think it needs to be frozen and then couriered to the lab. The next option is doing it in a different cycle. And the last option would be the menstrual test that I had. I think you'd need to know if you have bad bacteria and what bacteria there is to decide on antibiotics.

@Rainb23 when it comes to the microbiome, it can be dysbiotic (not normal, the bad bacteria aren't helping but they aren't causing damage), or you could have the bacteria that cause chronic endometritis, their can cause scarring and adhesions and will have a significant impact on fertility. Clearing the bad bacteria and getting a good microbiome is the first step, investigating to see if there is scarring and adhesions is the next step as that will need removing surgically.

@Violette22 that's interesting, it sounds like you need more lactobacillus, you could try some different products, the strains are different in different products. Hopefully you just haven't built up enough yet but would with more treatment.

@Babydustt12 you will need to at least wait for the result, it can take around a month, if you need antibiotic and probiotic treatment then that will take around 17 days.

@Dochas12111 and @Gardenlady543 thank you so much for this helpful advice and information. Did your consultant ever advice your partner take antibiotics also ? As I have heard it’s important for both partners to take them as you share flora with your partner but I’m not sure if everyone does this/ if it helps.

@Dochas12111 so exciting you are pregnant! When are you due?

x

@Rainb23 me and my friend both had our partners treated on the same antibiotics the first sample we had. My second one I didn't bother. My friend used fertilysis to send off a semen sample of her husband which came back fine.

@Gardenlady543 thank you for this xx

@Rainb23 I didn’t treat DH but we actually just abstained from after treatment until transfer and err the whole pregnancy so far as we’re too afraid to do anything my DH is very on board with this as we had a very long road (5 years 6 rounds IVF) to get here but I understand not every relationship has the same dynamic.

@Dochas12111 oh I see well what your doing seems to be working well so good for you and well done for making it this far xx

It's gone quiet here! How's everyone doing?

Hi @Gardenlady543 not much is going on for me. Feeling a bit flat about everything.
How are you? X

Hi @Gardenlady543 I'm ok. Just drained and stressed about life and this too.

Also looking at secondment opportunities but now worrying that the new employers won't allow me to take time off around transfer. I just feel so trapped in my current role because of this endless waiting but at least they know me, understand the treatment process and I could rest post transfer. If we ever get to transfer.

We've got a little holiday booked in early May and also away for the long weekend so that feels positive at least.

@VenusStarr sorry you're feeling flat. We could all just do with a break from all this but obviously we can't take one.

@Gardenlady543 how are you doing?

Let's all go on a spa weekend together and forget all about it (I know we don't know each other IRL but the thought of it is making me smile anyway!)

Love to you all xxx

@Gardenlady543 hi there. How often do you go for ultrasound? I am supposed to go every 6 months (hopefully the MRI won't show anything wrong). I feel the same as everyone else, tired and deflated and waiting for a little holiday at the end of this month.
I agree with @Janefx40, let's do a spa day 😏. We deserve it!
Hugs to everyone!

@Dochas12111 oh that is nice to hear that your friend was happy with IVF Serum! Do you know what made the difference with your friend? They have top rated reviews everywhere but all mostly about IVF so not sure if rpl is their expertise...

I have a call with IVF Serum on Tuesday, quite nervous about it, seeking help from abroad feels quite absurd .

My doctor sent an email to Igenomix about their opinion on a third Emma test...wont get the answer until after Easter.

Ps. As I write I am laying in bed at the clinic getting Intralipid infused....

@Violette22 I don’t know what the issue was but she did have 3 rounds in Ireland and all failed so at least 3 failed transfers and her 4th round there worked. I do think they found some kind of infection before her 4th round. What is rpl?

There is a thread on them on the Irish version of mumsnet - only really active up to Covid as presumably people stopped travelling then. It might be worth a read

rollercoaster.ie/community/fertility-issues/serum-girls/paged/88/

Another few stand alone here: rollercoaster.ie/community/fertility-issues/serum-infection-testing/

rollercoaster.ie/community/fertility-issues/fertility-clinic-decisions-serumlistergennetbeacon/paged/2/

My advice when doing consults for new clinics - especially after a long road like all of us - is to not spoon feed the consultants. I basically sent on my files and information and sat back and asked them what they would do. Rather than saying I think I have X problem and I want to try Y. I found 2 of the clinics I spoke to basically were like oh we looked at your file and we would put you on this protocol which was the same as the protocol I’d heard other women at those clinics being on. The one we went with were upfront that we were a complicated case and he would try X Y or Z and this result is weird and needs reviewing and he will have to decide on the protocol or we may need to try Y if X doesn’t work. So just see what they come up with for you first before you say what you want. I wanted someone to acknowledge we needed tailored treatment.

Good luck with it!

Gosh I have the same flat feeling @VenusStarr I feel like I have such a mountain to climb.

This is the life on hold horribleness of IVF @Janefx40 how rubbish that the average age people are doing IVF at is also the age people are supposed to be taking opportunities for their career to flourish. It just seems extremely unfair that this comes so easily to so many. Ah to the spa weekend, I'd love that when all this is over, at the moment I'm scared to go in water or over heat!

@Yuliaaa for breast ultrasounds well they said the biopsy mid 2021 just showed inflammation, but I had another scan in January and they recommended a repeat in 3 months, but I've not sorted it yet with all the other stuff thrown at me.

Hi all. Sorry I've been quiet on here for a while. Currently on holiday (uk) and finding it exhausting as came with my siblings and their families too, so it's non stop.

I had a nice surprise. My ivf clinic, who always have at least 2 or 3 month wait said I could do my FET starting in may. As I'm still not ttc naturally (as not had my phase two dr Shehata appt yet - that's next week) it means we'll do a norethisterone round, so my random periods shouldn't muck up booking appts in readiness.

Unfortunately I have seen a lot of holiday photos of myself and realised just how many biscuits I've been eating for the past 6 months. I really need to get my shit together before the FET. When I'm home I'm going to weigh myself be pissed off at myself and try and loose half a stone before transfer. Unfortunately I've been given loads of Easter eggs!

Big love to all. I'm up for the spa day