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

Link to the old thread

ERA/ALICE/EMMA testing thread 2 www.mumsnet.com/Talk/infertility/4333916-era-alice-emma-testing-thread-2

Checking in @Janefx40 good work setting it up!

@Dochas1211 @Gardenlady543 @seven201 @Cream123 @greendress789 @VenusStarr @StillTrying10000 @whatcangowrong @Littleblue80 @Parisinthesummer @tiggerwhocamefortea

Tagging everyone who posted on the previous thread in the past month. Apologies to anyone if you were taking a break. Also apologies to anyone I didn't tag. All are welcome. Xxx

Hello! Thanks for the new thread.

@Dochas1211 fingers crossed it's negative. Are you all jabbed up? If it's any reassurance it's been mild for me.

@Janefx40 was that in the ivf clinic waiting room? What a nob! I'd have said something. It's really rude. I think I caught covid off my acupuncturist! Who I see for infertility 🙄.

Hi all! Wow thread number 3!

@Dochas1211 I hope the Covid test is negative! Arg how stressful!

@Janefx40 I had been wearing an FFP3 when I went to places, it's just too risky with omicron and with supermarkets being so busy prexmas. Even if just for anxiety, since I found myself getting worked up when people got too close without a mask on properly or appeared to be unwell coughing etc.

So I am now getting worried about my pH, the vaginal swab was 2 weeks ago and was normal. My pH had been running at 4.4 (just below normal) but in the past in had been 4. I now have some cheaper sticks and when I did the old stick and the new stick at the same time, the old stick read 4.4 but the new one read 5, the colour was the same but the chart was different. I now only have the new one and it's consistently reading at 5 which is abnormal (although maybe a dodgy stick and actually 4.4), I'm using balance activ daily but it won't go down. I hope it's ok as anything over 4.5 is abnormal.

@Gardenlady543 which sticks do you have more faith in? The old ones are the less cheap ones? It sounds as though your PH hasn't changed if the old tests are reading the same (and if the colour is the same). I wonder whether it's worth buying a third brand for comparison? Sorry probably not helpful but this is a bit above my level of knowledge.

@seven201 yes that was in the IVF clinic waiting room. I know I should have said something but I just didn't want to risk it going badly and increasing my stress levels tbh.

I have FFP2 masks now so they are better at least than the standard I hope

Definitely have a very mild sniffle! Getting so paranoid now x

@Janefx40 the colour is the same on both so it's probably the chart that's incorrect. I'm hoping the more expensive ones are right. I hope I am obsessing over nothing, garnderella thrives at pH 6-7 so even 5 means I'm hopefully safe.

FFP2 would be good too for when you need to go out at crucial times in a cycle, in the USA this is the main one they use, they call it an N95.

Thanks for the tag @Janefx40 and well done for filling up the last thread chatterboxes! Hope everyone had a lovely Christmas and new year, covid concerns and compromises notwithstanding. We lost a few family members to self isolation but still managed to celebrate.

Update from me is had harmony test last week so just waiting on those results, scan still looked fine tho both measuring slightly behind which I'm assuming is normal for twins and I'm not consulting Google on the matter!

Love to all, I'm watching and reading still and will chip in if anything comes up that I know anything about. X

@Gardenlady543 where is the PH measuring though? Is it along vaginal canal? I would think I’d lining (menstrual sample) is all normal that’s the most important as that’s where the embryo is going? Sorry if I’m not understanding correctly!

Just spoke to my mother who said my 2 year old niece has a bad cold and got a negative PCR. I did notice the day we were heading back from seeing them over Christmas she was coughing but I didn’t clock that I should probably leave the room to avoid the germs!! So hopefully it’s not covid it’s just her cold. I’d been avoiding them until I get off the steroids actually because the kids are such little germ buckets this time of year but couldn’t at Christmas.

@whatcangowrong glad all is going well.

@Janefx40 I would’ve gone mental at that guy. What an idiot. Everyone doing fertility treatment is so worried about covid. I can an understand why you didn’t though! You know your own threshold stress wise.

@Dochas1211 have you had your booster? I did just before Christmas and now feeling more relaxed about covid, but did um and ah a bit about whether to have it in first tri.

I’m booked in for my booster on Jan 10th when I’ll be just over 12 weeks. The consultant who does my scans over here said not to get booster or flu in 1st trimester and when I emailed Lister they said they’re advice is it’s a personal choice so I wasn’t very reassured I didn’t know what to do really so in the end I just waited. Obviously if I now have covid it was a bit stupid but I wasn’t getting any clear advice.

@Dochas1211 I got a similar mixed bag of advice from different people and ultimately made the opposite decision. It's hard to know what to do for the nest isn't it. I knew I'd likely be exposed to covid at some point over Christmas and new year as we have a huge extended family full of NHS workers and school children! So far so good for me but if it had been a different time of year I think I would have waited.

Hi Everyone

I’m new here, but have posted on other forums. I’ve had 4 failed IVF (4 transfers of 6 embryos grades 3BA, 4BB, 3BB, 2BB, 3BCx2). No implantation at all. No implantation at all in 3 years TTC. No major issues - DH sperm fine, though motility is lower levels of normal (just above cut off), and slightly low AMH (I get 5-7 mature eggs on max dose stims). I have had nk cell tests with Brosens, & my results were bonkers 0.7% one month, 33% next month. I took steroids for latest transfer (no plantation).

I’m not sure I’m ready to give up treatment (I have friends who got pregnant on transfer 6 so know that’s possible) & just got my access refund (lucky me).

Any ideas of what I should be thinking of doing next (should I go to immune specialist, do embryo banking pgs, egg donor)… ? I really feel I have some

Not quite finished typing! Was just going to say I feel I have some endometrial issue. I only have a 9 day luteal phase (max), & in some cycles I spotted before OTD (though I now have Lubion & cyclogest) which seems to have reduced that. Or maybe it is my eggs?

Just really unsure of next steps and would appreciate any suggestions.

Hi @BerryBright My approach after 3 rounds that got me nowhere was to do embryo banking and then investigative work before transfer. What age are you? Would you have time to do the same?

As per the name of the thread the first one would be the ERA/EMMA/ALICE. It’s good you have done natural killer cells already. The ERA will also check your progesterone levels to see if they are high enough if you are getting some spotting. You may need a higher progesterone dose than normal - I needed way above what they usually prescribe and my consultant was shocked at how low my levels were.

Have you had any investigative work done on your uterus too? I.e checked the endometrial cavity - hysteroscopy for example, checked your Fallopian tubes are ok? Could be worth asking your consultant about these. Also there are thrombophelia bloods which could show if you have any mutations that mean you don’t absorb folic acid and also if you should be on blood thinners which can also impact implantation.

@BerryBright I'm so sorry you haven't had any luck yet. It of course could be totally random and it does feel soon to give up as I read somewhere the average for success is 5 IVF tries, so some women need many more. I'm in a similar situation (although I have had implantations resulting in losses too) I've had 4 failed superovulation cycles and 3 failed IVF so my clinic has recommended ERA, EMMA & ALICE as a good next step so I'm booked in for them in 3 weeks time. They've been really clear there isn't much research into it but have seen it finding treatable issues in some women which had resulted in later successes. Sorry I can't offer much advice but I can share if it turns out to be helpful for me when I get my results.
Have these tests been mentioned to you by your clinic? x

Hi @BerryBright I agree with @Dochas1211

I would get:

• imaging in the form of HSG or saline scan if you haven't had these before.
• ERA EMMA ALICE
• recurrent implantation failure tests (thrombophilia screen and autoantibodies)

Thanks for the suggestions, I really appreciate all of you taking the time to reply.

Embryo banking & PGS seems like a sensible option. I’m 36, so time is pushing on. I’m in the North so clinics are sparse. Been looking at Create and Care - does anyone have experience of them?

I’ve had a thrombophilia screen, & all good. I need to double check exactly what was tested, as I know some thrombophilia screens are more extensive than others.

I’ve had a HSG and everything was fine, but I do think a more detailed scan would be useful. Am I right thinking Hysteroscopy or Aquascan are my options here?

I’m also wondering if more detailed immune testing is needed (given my odd results). I’m thinking of contacting Brosens for advice, but I’m thinking of possibly seeing the immune specialist at Care or alternatively Shehata. Does anyone have any experience?

And last, I am thinking ERA, Alice, Emma tests would be in order. It was searching these that led me to this thread & I’ve been reading your experiences. Weird, because talking with you feels a bit like talking to Celebs, as I’ve read so much about you!

Haha at us being celebs @BerryBright I find it so interesting every so often when someone will come into the thread and say they're a long time lurker. Hi to the lurkers by the way, please speak up, we'd love to chat to you!

So a well performed HSG is likely all you need, unless you think something has changed after. Generally you only need a hysterosocpy if there is a reason to do it, as it comes with risks.

Good idea to check what you had as part of the thrombophilia screen. My thrombophilia/autoantibodies cost £1500 so if yours was a lot cheaper there may be scope for further testing.

I had my uterine NK cells tested with Brosens, it is likely the cheapest place and he takes a research based approach. We thought they'd be sky high but they weren't, even though I've also never implanted, they were normal and low.

A few of us are with Care, it has a pretty standard approach. I think most places outside of London would be like that.

My thrombophilia cost £180, so I’m guessing there’s a few tests I still need!!! Did you have yours performed at Care?

My current consultant said the same about the HSG. But I’ve read some things that say hysteroscopy can pick up things that HSG misses. I have quite heavy painful periods (with pain not cramps) so I’d like to rule out endo or scarring. But, also it’s expensive & carries risk. I know Greek clinics offer these as standard and at a cheaper cost, so I’m a bit tempted to do this abroad (& maybe get some sun on my bones too!)

Have you checked blood NK as well as uterine? I went for uterine because of research (DH is a biologist so he loves reading all the academic stuff on this) but I’ve read both can say different things (& of course doing research in this field is difficult as who would consent to being in a control group!)

How are you finding Care as your case sounds quite complex? How helpful are they being with exploring solutions etc?

@BerryBright I'm with Dr S and had a blood test for NK Cells. I still don't understand the benefits of having uterine NK cells tested as as far as I can tell the treatment plan is exactly the same regardless, so a quick and low cost blood test told me mine were very high without needing an invasive test other clinics offer. I may well be missing something though If anyone has other thoughts plz jump in x

Ahhh how do you find Shehata? I thought he would be very expensive. How much did the blood test cost? Are you doing superovulation with him?

@BerryBright welcome to the thread. I'm not as well informed as the other ladies so I'll leave the advice to them.

@StillTrying10000 my NK bloods show some elevated levels (and always have - done the text three times) but my uterine biopsy was normal. So I suppose that is maybe why it's worth doing both? I'm going to be treated with intralipids but not IVIG and not steroids as they don't want to change my uterine levels. I've no idea if this makes sense but am trusting them!

@BerryBright you'll need a laparoscopy if you think you could have endometriosis. In the USA people often have a receptiva test, it's a biopsy that can be done at the same time as an ERA EMMA ALICE, it looks for BCL6 which is linked to the condition. In the UK I think you can only get it from one clinic in London, I can't remember which. If it's abnormal then you may end up wanting to explore further with a lap. How did you get on in your collection cycles, how many cycles, eggs, blasts etc did you get?

I'm sure there are place abroad where you can get the tests for cheaper, when I was looking into investigations for Ashermans syndrome I saw that there's a doctor in Germany and they have a system where you basically go there and have the assessment on one day and then the doctor does the procedure the next, surgically treating the condition if he finds it. I'm sure lots of places abroad have this kind of system.

I only did the uterine NK cells, there isn't any evidence for it, and when the result came back the opposite of my situation I just thought there wasn't much point in diving deeper down the rabbit hole.

I am a doctor and my investigations and treatment have been led by me. I luckily have a specialist that has been happy to follow my lead. She is very much emotionally invested in my case, and she's honest that she doesn't know the answers. We've now done every investigation targeted at my case so that's it. It just comes down to how many more transfers can I go through.

@BerryBright first appointment and tests were around £2,500. I live nearby his clinic so makes a lot of sense for me. I know there are some women who travel down from Scotland and I just don't know how they do it. I've done 3 IVF and 4 superovulation with him. No success to date (prior to going to him I had recurrent miscarriages) now I'm waiting for EMMA&ALICE test. My last pregnancy was a 16 week loss due to infection so I've been wondering if there's something going on inside me to now stop conception. If you want to know more about him or NK cells there's this thread www.mumsnet.com/Talk/conception/4290124-immune-nk-cells-pred-thread-28