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

Hi all. Just catching up but it's late so I'll be brief.

@VenusStarr I'm so sorry to hear about your girl. I am glad you at least have the result back now.

@Gardenlady543 oh that is interesting. I'm glad you went for that second opinion.

Generally, my hat goes off to all you ladies who do all of this research. I feel overwhelmed if I try, so I don't go into anywhere as much depth as any of you. You are amazing fighters.

Love to all

@Gardenlady543 interesting to get this feedback. I've never heard of lean PCOS but it sounds like it could make sense. The journey continues. I feel like we're detectives sometimes, pieces together all the clues to try and work out what is going on for us.

Xxx

In other news I've had a positive OPK (Clearblue digital). CD 9?!! I was testing because i was getting signs of ovulation over the past 4 days or so. I wonder whether my body kicked into action once it realised the pregnancy had failed but the bleed got delayed by the progesterone? Is that even possible? Very odd for me to ovulate early - I usually ovulate late after an intervention like a cycle or meds.

I'm also wondering about the Hcg trigger and the timing of my transfer. Naturally I ovulate 24 hours post positive test (based on scans I've had in previous cycles). The trigger shot is based on 72 hours. What if the timing is out for me? I may schedule a consultation to understand in more detail the role of the trigger. I know it's because of the ERA but as the era was receptive I'm not too worried about sticking to that

Anyone with Birmingham womens hospital get their endometrio biopsy done? what was it like for you please? im struggling to connect with anyone in the same position.

Hi @SUMMERTIME02 I've had the tests but not at Birmingham. Do you have any specific questions or are they only relating to someone at the same clinic? x

@Janefx40 your hormones must be all over the place. I vary from day 9 - 14 for ovulation so am always random and certainly progesterone delays my bleed. What day do you usually ovulate, is it much later or just a few days? Lucky you tested and noticed it. What is your plan this cycle? x

@StillTrying10000 I'd normally get a positive on day 11 or 12 but after taking progesterone I'd expect it to be day 13 or 14. In theory we start again on next period but I expect Dr Shehata will have other ideas. Seeing him next Wednesday.
X

I had my test done 2 weeks ago and i just wanted to find out how long it took for the results. I was told 2 to 4 weeks so im going to call tomorrow for an update. I find defending on who i spoke to i get told to call back in a week or someone deals with it right away. I dont want more months to pass until i can start treatment :/

@SUMMERTIME02 I had mine done recently and got the results after 11 days so certainly worth you continuing to chase so you don't miss another cycle. I'm doing IVF and was lucky that my clinic let me start trying for my next cycle whists we were waiting for the results on the understanding we would cancel if results showed anything- which they didn't.

@Janefx40 okay, that's not massively out but understand it's different from what you are used to. Will you try naturally now? I hope Dr S has something useful for you to try next, let us know how it goes x

Thank you! i will definitely call them tomorrow then. I have read elsewhere that people have started their next cycle with risk of cancelling if results show anything but my clinic haven't mentioned it.
They say stay stress free to conceive/during ivf but i swear chasing it up is such a stress!

I also have a general question in regards to NHS clinics wait time.

If we are paying for our treatment (private), is it the same wait time as NHS funded patients?

@SUMMERTIME02 I'm afraid I cannot answer your Birmingham questions but I would say no one has ever been stress free when doing IVF!! It's one of the most stressful situations you can find yourself in so don't worry about that. I always say to people "don't stress about the stress"!!
Xxx

@VenusStarr I hope you're ok ❤️

Nobody has mentioned pcos before, I have always been thin and I have normal hormones (well the ones I've had tested). But I have a high AFC. I have ordered some hormone tests from medichecks, the male hormone test pack lol! I basically need all the male hormones checking and it costs so much to order them separately or with a womens pack! I called them up and they were like, "it's fine lots of women order it"!

@StillTrying10000 I don't think this potential new diagnosis will really change anything as if it is this then it will most likely be causing immune issues which will be the focus.

@Janefx40 I often have my LH sticks getting darker and then they look like a peak and then get lighter and the actual peak happens a few days later, could it be that?

@SUMMERTIME02 I think it's the lab that is causing the wait at the moment, I hope they'll pass on the result to you as soon as they get it. I think my first one took around 4 weeks to come back but my second was quicker.

@Gardenlady543 good luck with the tests. I think Medichecks are really good.

It was a CB digital with dual hormones so should be accurate. Confirmed with cheapies too x

I finally had a positive opk test today on cd25! Managed to get a scan and my lining is 7mm with a follicle about to burst. Was hoping for 7.5+ but 7 isn't too bad and a lot better than 5mm. Hopefully that means slightly less drugs on a FET, but I suspect they'll want to keep most on the regime.

@Gardenlady543 the male blood pack sounds a great idea! I hope it proves useful.

@seven201 hooray! Well done. Great that it's thickened up a bit xxx

I know this is nuts but I feel like I'm about to come on. My hormones have gone crazy. I was getting signs of ovulation from CD6, positive OPK cd10 and now I'm cramping. My boobs have been huge the past two days like just before a period!!

@Janefx40 the CB monitor is pretty accurate I find, it sounds like maybe your body is a bit all over the place with todays update, I hope your next cycle is more normal for you!

@seven201 7mm is good!

I haven't got my immune test yet it hasn't been dispatched but saw an appointment come up with the doctor at that company for tomorrow so I've booked it.

@Gardenlady543 do you mean you haven't given the sample yet? What will the appointment be for then? Sounds like things are gradually progressing.

Xxx

Hello everybody, jumping to this thread actually from abroad, I hope it is fine for everyone :). The Era+Emma+Alice testing is still quite rare in my home country and there is pretty much no discussion threads about it here, so trying to get some peer support and info from you lovely UK ladies :-).

I am 33 years old and suffering from recurrent miscarriages, had five so far in 1,5 years and no children :(.

Pretty much all the testing that can be done in my country for miscarriages has been done and no cause found. My latest miscarried embryo was tested after the miscarriage and was found out to be chromosomally normal. This was devastating since earlier I had thought the cause is propably poor egg quality and maybe IVF with PGS could help us. After this info my doctor suggested doing the era+emma+alice mainly to find out info about any infection/inbalance in my uterys. We weren't that interested in the era since we are not in IVF but did all three tests anyway.

So it turned out that the era and alice were normal but my Emma test showed I have 0 % lactobacillus and 77 % gardnerella. I was prescribed metronidazole (which I am now on) and after that lactobacillus crispatus. After these medications we will redo the test.

I have not read all three threads through but found an earlier message that at least @Gardenlady543 had a similar microflora. Would be really interesting to know what your treatment protocol for it was in the end and did it help? Also any other experiences about a similar situation would be really helpful. O am espescially interested if there's someone suffering from multiple miscarriages and has seen improvement through changing the microflora...I think emma is generally more used for implamantation failure problems....?

Thanks in advance for any comments or help :)

@Janefx40 it's been a week and they haven't dispatched the kit, I've sent 2 messages about it but got no reply so I'm hoping I can at least get them to send the kit out with this call or find out when the kit will be sent, it says in the website it should arrive in 2-3 days. I'm also hoping he tells me if he thinks immune issues might be a problem in me.

@Violette22 hello! Welcome!
Wow you must have gone through a lot of our messages to find out our results, me and @Dochas1211 both had 0%, I think I'm right in saying we both had implantation failure. I needed two courses of treatment, your result is similar to my second analysis and indicates an active gardnerella infection.

This is how I treated it:

• 2 weeks of antibiotics- metronidazole orally + clindamycin vaginally
• Daily oral probiotic (forever more)
• During the antibiotic course I alternated daily between a clotrimazole 100mg pessary and a vaginal probiotic.
• After I finished the antibiotics I used a daily vaginal probiotic (I did a course of florafemme- expensive but have the most probiotics compared with other products) and then carried on with cheaper vaginal probiotics and daily vaginal acid tablets (I used balance activ)
• I then reduced down to a balance activ x2 a week and vaginal probiotic x2 a week.
• I monitor my vaginal pH regularly to check the pH stays

Thanks a lot for your thorough reply @Gardenlady543. It is really useful to get this info on your protocol in case the treatment Im currently on doesn't end up solving the problem. What percentage of lactobacillus did you manage to get with this protocol?

May I ask what do you mean with the possible adhesions? I'm sorry, I don't know all the English medical terms so didnt really undestand what you mean with this :).

I have noticed reading threads here on mumsnet that in the UK you can get plenty of immune testing done for to recurrent miscarriages as well. It is such a shame that we don't have those tests (NK cell things) here. However, my doctor has perscribed me intralipid infusions for my next pregnancy although we cant test if I have those problems or not...

@Violette22 what country are you in?

Adhesions are bands that attach the uterine walls together, they can occur with chronic endometritis. You didn't have the bacteria commonly associated with the condition (that's what the ALICE tests for), but I think it is still up for debate as to what bacteria can cause chronic endometritis.

It's always worth doing imaging like a HSG or saline scan in any case. Structural issue can be missed on ultrasounds.

In my first EMMA I had 0% lactobacillus, I was treated with 7 days of co amoxiclav, and followed it with a huge amount of vaginal and oral probiotics. I got rid of all but the gardnerella, which unfortunately flourished.

On my second EMMA I still had 0% lactobacillus. I then did the treatment plan I wrote here. I really would have a look into the vagina acid tablets if I were you, you need an acidic pH for lactobacillus to adhere to the walls of the vagina and it's lactobacillus that creates that, so in the absence of any lactobacillus you will benefit from creating it.

For my third analysis I did a menstrual fluid microbiome test, they didn't give me a percentage but lactobacillus was stated to be "very high" I asked what percentage that is and I was told by the company that it means above 79% and could be anywhere up to 100%.

Since there I have kept an eye on my vaginal pH which has been below 4.5 for a few months now. This means my vaginal microbiome has a lot of lactobacillus. Garnderella flourishes in high pHs.

@Violette22 great you are able to get the intralipids, on the NHS in the UK to treat my NK cells they prescribed 400mg Hydroxychloroquine and 75mg aspirin a day which worked for me and many other ladies. Both drugs are cheap with low side effects so maybe also see if you can somehow get those. Good luck xxx

@Gardenlady543 thank you so much for the additional info! I am from Finland, greetings from the North :).

I have had a hysteroscopy done in 2019 before all the miscarriages to remove some polyps but surely things may have changed since then...if those kinds of adhensions would be found, should they be surgically removed or what is the treatment?

Those vagina acid tablets sound interesting. Are you able to give me an example of some brand/product so I could take a better look?

The clinique where I'm being treated wants the probiotics to be a certain kind; lactobacillus crispatus. You can't find them here in Finland so had to order them from France.

One test that my doctor told me about is Receptiva DX where they take a biopsy from the uterus and check it for "silent" endometriosis. My doctor will get back to me about its costs and whether it could be taken on the same appointment as my EMMA retesting.

@StillTrying10000 so happy to hear that you have succeeded