ERA EMMA ALICE testing thread 7

[VenusStarr]

Hi all. We're on our 7th thread! Really hoping for some more positive news in the coming months.

Thank you @Gardenlady543 and @seven201
Post transfer acupuncture session definitely helped me relax and focus on positives. My acupuncture lady used to work in IVF clinic and said she’s heard it can mean the embryo hatching and stickier so hopefully it’s just extra sticky and now sticks in right place!
I must be quite zen as just discovered boiler leaking and had turn off the system, but stayed quite calm. Engineer going to try and come out tomorrow/Saturday. Why do these things always happen when DH away…I’ve got some electric heaters so hopefully house doesn’t get too chilly. I don’t want to use the electric blanket in bed and overheat the embryo though, maybe okay on lowest setting. No showers for me 😬

How are you feeling today @seven201 ?

I hope your DH doing better @VenusStarr and there’s some progress today.

@Gardenlady543 was the end result worth it? Doesn’t sound a great/relaxing experience 😬. LOL about the vaginal probiotics turning up if you’d done that!

@clhiu sounds some good progress and a plan. I’m sure it must be exciting and scary in equal measure. Let us know how you’re getting on 🤞🏼.

@Lizzybeth1998 I get what Robert Winston is saying but the challenging issue in fertility medicine is - who has the time to wait for the trials? Often small sample sizes, mixed bunch of reasons/medical issues that muddy results, and to be honest at this point in time with time ticking for me (diminished ovarian reserve due to endo rather than just age though that also now creeping up) if I was offered potential for getting placebo vs treatment in trial I would not do it, just want to try the treatment even if benefit unclear (providing no obvious risk of harm). So much of it has to be experimental because we’re in a rush against a clock and often have very precious embryos we don’t want to risk wasting. I get thought that they are expensive and add a delay. I know some clinics offer just the EMMA/ALICE a bit cheaper if you can shop around just to get those done as you don’t need the ERA eg Hewitt centre in Liverpool ALICE (for chronic endometritis) is £300 . The results give you a treatment plan and what antibiotics or probiotics to use (some oral some vaginal). Bear in mind if something to treat than a repeat is usually recommended but the repeat is charged cheaper by the lab supposedly, not sure if people do really repeat it. My result was all clear so not sure. The swabs @Gardenlady543 mentions might be a good middle ground to discuss with consultant? Are there any other ideas of new tests/new treatments to try
besides this? It sounds like you’ve had an immune work up? Sorry if you’ve mentioned/if I’m stating the obvious but have you had a hysteroscopy and a HSG/saline scan? I think you have to get yourself to a place you feel comfortable with your decision. No point going ahead without, then having something happen and regret not doing them. So hard I know. But that’s generally my approach - if I see myself kicking myself for eternity for not doing it if worst outcome were to happen, then it’s not worth the stress.

Hope you’re doing okay @Spin101 any news from the clinic about a plan?

Have you been able to start downreg yet @Loz2467 ?

Hope stims going well @CailinInUK and @Lori2022

Hope everyone else doing okay x

Lol @Enfys23 my neck feels stiffer after the massage than it did before, we have booked to go back before we fly home, I just need to decide if I want this painful massage again or a gentler one.

I just figured out how to order vaginal probiotics on Amazon here, so hopefully I'm going to have some arriving tomorrow.

@Enfys23 the acupuncture sounds good, my boiler is constantly breaking :( I hope you can get it fixed asap.

Yes all other tests done, but having read everything I think you're right and need to make the leap and do it.
Having read a lot now i can see in a way I'm lucky as my clinic are offering to do it for £375 which includes scans, cycle monitoring and the biopsy itself, so I'm not having to travel too far either and it's a place I know.
Ultimately as you said, if it leaves me worrying and doing the "what if" game then it's not worth the stress to not do it!
So I guess I'm booking myself the ALICE & EMMA test! 😊
Thanks to everyone here for their sage advice ❤

The test cost is separate with the test company I should've added

A lot has been happening on this thread. I’m sorry that @VenusStarr and @Gardenlady543 have had difficult holidays.

@VenusStarr Hope your husband makes a recovery.

I’m stressing a bit as I’ve been really careful with my husband wearing masks when downstairs and keeping a distance. He’s better but my toddler has got the virus so constantly cleaning! He’s not too bad during the day but wakes up during the night.

I’m thinking of getting another swab done to check atopobium vaginae has gone down. This time I’ve been using pessaries with boric acid in them with the advice of nutritionist as well as doubling up on oral probiotics with digestive enzymes. It’s costing a fortune! I don’t seem to absorb oral probiotics very well but digestive enzymes taken temporarily are supposed to break down to disrupter/bacteria.

@Enfys23 Pleased acupuncture was good. Good luck with your transfer. You have done everything possible.

@seven201 When did you start taking canesflor? When do you take your oral probiotic?

Thank you again for all your help @VenusStarr @Gardenlady543 @Enfys23 and @seven201
So the night sweats continued for 4 nights and then stopped. My estrogen levels had dropped by 34 (from 1108 to 1074), but that's apparently within normal fluctuations. So it must have been the pred.
I got my progesterone levels checked early on Wed, but the results unfortunately weren't available until this morning (being transfer day)! It was bad news - levels were low at 21. We were given the option to start Lubion to try to fix the levels (but it might already be too late) or cancel the cycle. The doctor was erring more towards cancelling. I was devastated. We decided to go ahead with the transfer but, instead of using our next best embryo, to use the 2 lowest graded ones (which leaves 2 good ones left). Everything went well and they're now safely on board 🙂. Pred has been doubled today, Cyclogest increased, and Lubion and Inhixa injections added. Just trying to get a private prescription, as Asda do the Lubion at half the price of our clinic! Now for the 2ww...

I'm sorry your transfer was so stressful @Enfys23 and then the boiler issue too, all with DH away. You're much calmer than I would have been! I hope your 2ww goes well xx

Sorry @seven201 , I've now seen from the other messages about your scan. I'm sorry for the uncertainty and really hope it's a case of late implantation. Hope you're ok xx

@clhiu I've had my intralipids through my fertility clinic (Care) at £270 a time. I have to have them on day 21 the cycle before the transfer cycle, then again around day 4-9 of the transfer cycle. Upon BFP, I would have them again at 4-5 weeks, 8 weeks and 12 weeks of pregnancy. Every clinic / protocol is probably a bit different. Happy to answer any questions you may have. It gives me a sore arm/shoulder (the fluid is cold from the fridge) and I felt really rough after my first lot (went to bed and slept for over 3 hours), but I was ok after the second lot. Hope that helps.

You're welcome @Faithhopelove83 congrats on being pupo 🥰

Things are not so good for me... its long and complicated. The short version is dh needs surgery, insurance company wanted to repatriate but there's no UK beds, so it'll have to be here. Lots of phonecalls with insurance company but not much progress or movement. The hospital is very slow and now its friday evening so nothing happening til Monday. Definitely not making our Sunday flight home and not entirely sure where I'll be staying Sunday evening... 🙃

@VenusStarr I’m really sorry you’re going through this. Can you stay in hospital as well? I know it’s not ideal.

Thank you @2021ivfagain I don't think so. Worst case the travel company are trying to get an extra couple of nights for me here as dh needs to move hospitals but helpfully we don't know where yet. But our insurance doesn't work with this hotel. They won't let me just book a couple of nights so hoping the rep can sort it then I claim back maybe.

Thank you @VenusStarr 😀
I'm so sorry for what you and DH are going through, it's just hurrendous. I hope everything gets sorted with the hospital/surgery, accommodation and insurance. I really hope, though it's awful now, that it will all turn out to be for the best and DH will be well soon. Hang in there xx

@Faithhopelove83 that's fine to add progesterone, my understanding is the level is to sustain a pregnancy, not for receptivity. Estradiol level is very good.

Oh no @VenusStarr I hope DH is ok, when is the operation, he is in the emergency list I take it? Gosh this is the last thing you need, when were you supposed to fly home, will you need to extend your stay? What a stress, I'm sorry :(

Thank you @Gardenlady543 , that's really reassuring. The doctor said their stats were 30% pregnancy rate in cycles where they try to recover the progesterone, 40% in cycles where the progesterone was right in the first place. Which is why we decided to change the order of the embryos. I feel at peace about the decision - hopeful but also with managed expectations.
I hope you're still enjoying your holiday, or have had a good time and are back safely xx

Hello. I hope everyone is hanging in there and doing as well as possible ❤️

Thank you @Enfys23 and others on advice on intralipids.

I’m getting increasingly stressed and concerned about the low levels of lactobacillus. I turned down the option of repeating the EMMA biopsy after 2 weeks on the probiotics as I cannot face the prospect of a further delay, but I’m now worried it could be one thing that jeopardises everything after getting this far. Are just 2 weeks of probiotics usually enough to improve lactobacillus? It doesn’t sound like a lot. Has anybody on this thread with low lactobacillus retested after just two weeks on it and saw an improvement? I’m reading studies showing it can take 6 months to show significant impact, please someone tell me it’s not true.

Apologies for the stress and negativity, I’ve woken up in a really frustrated hopeless mood.

Thanks for the support and kind thoughts ❤️ spent all morning on the phone to the embassy and insurance. I'm not leaving him here, the care is not good. I just want him home but he's not fit to fly. Everything is very slow. Never want to go abroad again 😢

@clhiu I understand completely as someone who frequently suffers from atopobium vaginae or gardnerella. I had an ultra low lactobacillus microbiome with no pie chart to give me anything. I had some dysbiotic infection but not enough to warrant antibiotics. Therefore, at CRGH I was told to stay on oral probiotics with prebiotic throughout. I was also told to take vaginal probiotics up until transfer (ideal time is stopping 2-3 days before transfer). Then I was not told very much about when to restart. I found the Invivo swabs more helpful as it told me I do have lactobacillus Jensenni in my microbiome but this is the only one. I usually don’t have many bv-related issues though. It does take 21 working days to get the results back which did cause me stress this time as I received the result 5 days before transfer, but I was experiencing symptoms and I was not being heard at CRGH.

The only thing about repeating the biopsy which you could do is it would involve more antibiotics. I’ve just finished antibiotics (metronidazole) due to high levels of atopobium vaginae, but I had symptoms which CRGH did not pick up with their basic swab test. This has happened twice. I did a swab with Invivo which is more sensitive. My transfer has been delayed for months. I started my first cycle when my levels were good in October 2021. I only have 7 day 3 embryos frozen which they predict will be 2 or 3 untested blastocysts. That’s it. My other blastocysts that were produced after having covid and when my fsh was bad had to be discarded.

I have to be on steroids due to slightly raised nk cells in blood but I also have slightly low nk cells in endometrium. In January my transfer was cancelled at baseline as I caught my husband’s cold when my son got it, but also had stead of both elderly parents in hospital at same time! Then in March this month just before transfer I had atopobium vaginae and my husband developed a virus. So I cancelled as I would have needed help with my son. My son now has the virus, which thankfully is not that bad, but now I have it. I’m usually last to get things as my immune system is stronger. But now I don’t know what this means for my treatment as in how long I should delay it. My husband is thoroughly fed up with the whole process and just thinks it will not work now as we’ve had so many setbacks with CRGH and his viruses.

If I were you, follow your gut. Perhaps do a swab which avoids going on antibiotics unless you have to. What probiotics are you taking?

@clhiu I take a daily vaginal probiotic on my FET cycles, so you could do that. Like @2021ivfagain says you can stop 2 days before transfer, I then plan to start again 2 days after, until the 6 week scan if I get that far.

@VenusStarr is DH still having surgery, I hope he's ok, can the insurance repatriate, are there beds now? Thinking of you, what a nightmare :(

Is anyone having Neupogen infusion on first day of progesterone? I have it to increase nk cells in endometrium. Does anyone know if vaginal probiotics should be stopped day before and day after neupogen infusion as my consultant kept changing his mind and I felt very uneasy last cycle? Thanks

It's awful @Gardenlady543 just want him to be in a UK hospital... no surgery until they've transferred him. No transfer til Monday at the earliest 😢 insurance have sorted emergency accommodation as we were due home tomorrow.

Ladies I’ve had such a nightmare! My whole Hotmail account decided to log out when my phone updated! I couldn’t recover the account because I couldn’t remember my Skype details from when I was like 20 years old! Anyway. I finally managed to get back in and I’m wayyyyy behind on the thread!

what I’ve gathered is so far @Enfys23 you’ve had your transfer so fingers crossed for you!

@VenusStarr i can see you’ve had some issues on hols with your DH so sending hugs and hoping you can get something sorted.

Im really out of the loop with everyone so I’ll try and keep ontop of it from here 🙈

For me I’m 2 weeks into my lupron depot down Reg and no side effects so far. I thought I’d have a bleed - and I haven’t so far and I’ve read it’s good if you do have 1 as it’s old lining coming away. It feels odd like I’m in a limbo for a while until my FET. As usual I can’t stay off google and I’ve been looking at success of lupron but it’s mainly for endo stories and can’t find much about adeno but I don’t want to get my hopes up because I saw the progesteone being successful after ovulation for people with brown spotting but that never worked getting me pregnant again. So I’ve kinda stopped reading now.

One thing I have come across is adenomyosis is linked to ureaplasma and I had an infection (chorio suggested by covid) which caused my miscarriage at 19 weeks. So I feel it was caused since then.

I had a biopsy last May which I was told no endometriris but I feel i wasn’t told anymore. That was with Care Manchester who I’m still with for my IVF.

Also as it’s similar to endo it says it’s linked to NK cells and immunes. My dr wouldn’t give me any immunes.

Also I link to microbiome etc what you ladies are insane with!

so question is should I be testing anything whilst I’ve got this time on my down Reg to give my FET the best chance!

my FET protoco is just this down Reg. Then a fake cycle day 1 so no bleed to start the estrogen if I’ve down Reged okay. Then cyclogest x2 and lubion for my luteal.

xx

@VenusStarr is he still in hospital? This is such a horrible situation to be in :(

Yeh, been in all week ☹️ @Gardenlady543 it's like being stuck in a nightmare. I'm trying to be strong for him but it's devastating.

@VenusStarr you must feel lonely with him in there and you in the accommodation, can anyone from your family or close friends fly out to support you?

I'm quiet but following and just wanted to post a virtual hug to @VenusStarr. Sounds like you're doing an amazing job looking after your DH. Keep us posted. X

@VenusStarr thinking of you and DH. What a nightmare

Also sending hugs and best wishes @VenusStarr, cannot imagine the stress you must be under, I hope things can finally move along soon X