ERA EMMA ALICE testing thread #6

[Gardenlady543]

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22 @2021ivfagain @OrangeBengal @Enfys23 @Loz2467 @DEIVF @Hopeful199 @ER12 @greendress789 @Douchas12111 @Lori2022 @AdviceForJane @Anonbaby @Molls87 @ChickenT2b @GoldenElephant @IVF22 @StillTrying10000 @warrior101 @whatcangowrong @Yaynayokay

Oh yes it really has happened we are onto thread #6.

All are welcome to join us, we started out as people interested in ERA EMMA ALICE but we seem to have had every test available between us.

So if you want to know about the microbiome, reproductive immunology or you just feel your case is complicated and what like minded people to talk to about it you've come to the right place

@Anonbaby thank you, that's reassuring, I appreciate you popping on. I will Google Douglas pouch!

@Gardenlady543 good idea about smear at the end of a cycle. I will keep trying. Sorry about the hope then bfn for you.

@Loz2467 my lining struggles in a FET but it also struggles in a normal cycle, not sure about in a fresh round, but generally I think fresh rounds are better for lining. Can you ask about extras eg aspirin, viagra, extra estrogen or neupogen (I've tried all of these, not convinced any made a difference to be honest). Some tiles it's just fine (not good), others just won't thicken enough. I've stopped on vitamin E, l-Argentine etc in case it was causing some of my excess fluid. Well done for getting the ball rolling again.

@CailinInUK
I have serious anxiety about my lining! So I’m going to have to see how it goes. I’ve only ever had it scanned once pre ovulation and that was on my fresh cycle where it was 9mm and triple layer and apparently looked good. But then just looked crazy on transfer day after the progesterone and the dr made the comment of “lining looks okay” and “embryo is good”. I know I mentioned it before but it made me think something musnt of looked right. Yeah it was me! Glad you saved some money! I’m about to get my protocol for FET so I’m going to use them again if it’s worth it.

@seven201 thanks for your help. I did think that they were usually better in fresh so I am pretty worried. I’ve been paranoid about lining issues since my second trimester MC and especially with the comment made last time. I guess I’ll have to see how it goes and hope for the best and if it isn’t thickening if I can have extra meds.

My clinic said they now do progesterone blood test on transfer day anyway so no need to request it. I’ve asked for extra prog anyway. Asked about my lining I’ll hopefully get my protocol amended next week and get my meds.

I won’t be transferring for a while because of the long down Reg which is also another reason I’m worrying my lining won’t build back up.

Hope everyone doing okay through it all. Just an update that had review today. Consultant has suggested adding in pred and clexane. Feels like big step to take but if it’s going to help then I’m willing to try. Said to get thrombophilia screen done for completeness but either way thinks with my autoimmune history that would suggest trying it. They were happy with my lining as it got over 7mm this time in the natural cycle so doesn’t want to alter anything from that point of view. I will have progesterone officially tested this time too on day 3 of starting progesterone. Did offer a repeat ERA in modified natural cycle but as things (besides the BFN) worked well in true natural we agreed to stick to this for now, esp as ERA evidence seems less robust these days.

Said if next transfer unsuccessful then we could consider karyotype testing and sperm oxidative stress test etc, and maybe re look at ERA. We’d be heading into 3rd stim then. I might need to do freeze all because my lining was crap in fresh.

Good to have a plan but a bit nerve wracking thinking about pred and clexane. How have people managed with these meds?

Hey @Enfys23 I'm glad you have had your review and have a new plan. What dose of pred are they suggesting? On pred i get moonface (hamster cheeks) and feel like I put on weight quickly. When I was pregnant on it, I did feel very anxious and hot - but that could've been pregnancy itself. Take it early in the day otherwise it can impact on sleep, but again progesterone and pregnancy interferes with my sleep.
Clexane makes me bruise easily. I had some very interesting tummy bruises on clexane. I was still injecting lubion as well, so my tummy did start to feel sore after a while. And it looked awful. When will your next transfer be?

So, it turns out, after 3 years of avoiding it, dh and I have covid 🤦🏻‍♀️ I genuinely thought I was immune! 😅 thought my nk cells zapped anything and everything! It explains what I've felt so run down though... have done some reading on fertility and sperm and hope it'll all be OK 🙏 still about 6 weeks before we're ttc again.

@CailinInUK did you get CD1, I have some light spotting so imagine it will be tomorrow.

That's so frustrating about the lap @Loz2467

Hi @Anonbaby have you got a similar name on Reddit?

@Enfys23 that's good news about the adjustments, I think clexane is pretty standard and steroids is the first step in immune treatment, so it's not too aggressive but hopefully will help. When will you start the FET cycle?

@VenusStarr my December FET they put me on clexane from CD7 and I still have bruises from the subcut injections 2 months later :( my moon face has eased now from the steroids I think. Oh no way on Covid! I've managed to avoid it so far too, maybe I'm not safe either!

@Enfys23 pred I find gives me energy but for the first few days at least I struggle to sleep. I also find I need to wean off it, even if only on for a couple of weeks as I have a very low mood once after stopping cold turkey. Clexane is fine but as others have said can cause bruising. I get an impressive green and blue stomach after being on in for more than a few weeks. I'm glad you have a plan together - always a good step forward.

@VenusStarr sorry about the covid!! Hopefully it won't delay your next go.

I managed to get a covid booster not long ago. No idea how I qualified, I just got an nhs text saying I could book it.

I'm pretty sure I'm out for this month. Official test day is Thursday but a very stark first response this morning. Both dh and I had a good feeling about this cycle (we never feel like this!) so it's frustrating. I think I'm going to start getting the ball rolling for a FET (last embryo) in a couple of months.

@Gardenlady543 no sorry I’m not on Reddit! Xx

Aw no! I really hope you both recover quick with no long lasting effects 🤞🏼@VenusStarr

Thank you for advice, @VenusStarr @Gardenlady543 @seven201. It makes sense given my autoimmuneiness (haha maybe that’s a made up word) to try it. CD1 should be next week sometime to start the new FET cycle. Did you ladies start clexane and pred from embryo transfer or earlier? I was quite taken aback and forgot to ask this or about the dose! I think I was just expecting them to order tests and didn’t expect they’d say regardless of tests they’d advise the meds given our IVF results so far and my medical history.

I’m so sorry @seven201 it really is devastating when you feel everything is going well and have high hopes. Be kind to yourself x

I'm sorry @seven201 hoping its just a bit too early for you. I always think 10dpo is really early! I'm sorry you're frustrated, it never gets easier ❤️

@Enfys23 thank you. I've started clexane as early as cd2 but it's usually about 8days before transfer.

Sorry you're still bruised @Gardenlady543 they do linger don't they? 😞 my moonface took a few months to go too.
What's next for you, if cd1 is tomorrow? Sorry, I've lost track of where everyone is up to x

@Enfys23 can I ask what your autoimmune history is? I have immune system issues and they dismissed me when I suggested I might need pred. I'm having the NK toxicity and assay test done tomorrow.

Clexane was totally fine for me, we chilled the injection area and it didn't bruise other than maybe one time. Pred has funny side effects depending on the dosage. For me the main ones were moonface (still got some of it), hunger and shaky hands but they dropped off when the dosage did. They advise to take pred after breakfast (from what I recall) because it can mess up your sleep.

@VenusStarr Oh no, not the vid. huh, never occurred to me that it could be my reactive immune system keeping me covid free for three years. That, and I don't get out much lol. Covid can impact sperm (and I'm sure it did for my DH, plus his hair started falling out) but it will improve in few months. Your Dh might not have as many sperm issues as mine, can't remember.

Erm so today we were told DH probably has antisperm antibodies. He went for a DNA frag test and they agreed to prep his sperm as if we were doing a cycle and that's what they came back with. Very low motility but normal count, with ASA killing his sperm. So that's fun! Another bloody hurdle. Not even sure what can be done, need to speak to them some more.

Oh @thislittlebird I'm sorry there’s more hurdles but hopefully once you can speak to them some more it may help formulate a plan.

I don’t mind - I have autoimmune hypothyroidism and Coeliac disease, I also have a parent with autoimmune arthritis. Plus I have endo which seems to be linked by many to autoimmune issues now. Thanks for the tips too.

Did others have NK testing before having pred? I’m just wondering if I should look at this but not sure how I’d go about it. Or should I just give things a shot with pred and clexane first?

Thank you @thislittlebird dh is really suffering, absolutely full of cold, whereas I just felt like I had a virus and run down. No sign of a cold at all. Dh is also still having stomach issues which he thinks was the Doxycycline.
I'm sorry to hear you've had more setbacks. I don't know much about antisperm antibodies
Do you have a follow up planned? I hope they can explain things in more detail for you. I wish things would just go smoothly for us all ❤️

@Enfys23 I'd be inclined to go with the steroids and clexane for now and look at testing in future if needed. I know someone who's ivf clinic gave steroids for coeliac disease (no previous losses but one negative ivf cycle), pregnant in second cycle, first transfer and it all worked out.

@VenusStarr maybe your NK cells are doing something then!

We're just doing testing and emails back and forth with the clinic right now. Have an NHS andrology appointment next week so we can ask the guy there what what options he'd suggest and then talk to our clinic. From a bit of a google tonight, it seems like prednisolone could possibly help him. We'll be Mr an Mrs Moonface . I'm considering booking an appointment with Mr Thum, the Lister's immunes guy, he's written papers with Shehata and co so they obviously work together.

Antiphospholipid screening - anyone had this? I don't know whether it's worth paying for when I've only had one chemical.

@Enfys23 yeah, i guess at least we know and can try to deal with it in some way. Just so frustrating we've wasted years of TTC with this crap and no one ever said to just do the full gamut of tests. It's so piecemeal and disappointing.

I personally would have had pred without the £650 of tests but they won't let me have it without the tests, so if I were you I'd go for it. I had clexane without the thrombophilia test.

The great news just keeps coming. It looks like 100% MAR antisperm antibodies sooooo….yeah. Wish one of the many, many specialists we’ve seen in that time had thought to test/check/mention this but here we are, 3.5 wasted ttc years later.

@thislittlebird I’m sorry to hear this, and that it’s taken so long to get to this point. It’s beyond frustrating. We have to fight for answers all the time. I’m not sure what the implications are for you but hope something effective can be done about it.

@Gardenlady543 yes, I had CD1 yesterday afternoon. Pushing to get my down reg scan this Friday or Sat so I can start stims on Sat.
Has your spotting developed further?

@VenusStarr get better real soon and hope no treatment delays for you.

I'm so sorry @thislittlebird I've had a Google but I'm not totally clear on what it means, is it that the speem is under attack all the time? Do they know what causes it? Would the prednisolone be an option?
God, sorry, loads of questions. Don't feel you have to answer! I hope that you get some clarity over what it means for you both ❤️

I had the Antiphospholipid screening with my recurrent loss tests. Its quite long winded i think toget a diagnosis, you need 2 tests to confirm over about 12 weeks (although thats nhs tests, might be different privately). Did you say you're on clexane? I'm sure thats the treatment anyway.

Thank you @CailinInUK I feel very lethargic at the moment.
How are things with you?

Thanks for the advice everyone. That’s really nice to hear @VenusStarr about the person with coeliac. I hope you’re feeling better day by day.

It does seem I’m lucky being offered this treatment without need for expensive tests or the travel and hassle involved.

Thankfully GP has agreed to thrombophilia bloods which will save us money but the consultant says we will do the pred and clexane regardless so I don’t need to wait for results.

I think this thrombophilia blood screen includes tests for antiphospholipid syndrome as it’s certain antibodies @thislittlebird . I’m sorry to hear about DH results. I’ve come across this in reading about immune stuff so does that mean that 100% sperm have these antibodies attached? It seems washing them off in IVF prep or pred can help. I hope you cud get some plan for it soon. It gets so frustrating when things are only done piecemeal and leaves you feeling there’s been massive wasted time/money and more importantly all the associated emotional pain. Sending love

@CailinInUK main implication is that natural is just not going to work for us. And if we’d known this two years ago we’d absolutely have started private ivf instead of waiting for our nhs round and hoping to conceive naturally in that time. It’s such a headfuck tbh. We’ve lost years to doctors not accurately assessing us both since the very start. Hopefully you can start your stims on time!

@VenusStarr yeah, basically. At some point due to injury, trauma, mumps, infection, surgery (or something like that) his body has started producing antibodies that attack his sperm, which explains why they don’t swim. So there’s no chance of them making their way to an egg because they’re being attacked and dying before they’d have a chance to get there. We’re not sure what causes it exactly but one of those things listed and he’s had trauma, mumps, infection. Could be any of them.

Yeah I read the pred thing. Apparently it’s quite controversial but I’m going to discuss it with our consultant or the immunes guy when we have the dna frag results back.

Oh clexane is the treatment for that? Hmmm yeah seems pointless then but a relative asked if I’d had it and I wasn’t sure if it was worthwhile. I’m on clexane because of the one chemical already.

@Enfys23 i tried to get thrombophilia tests from GP and they weren’t having any of it lmao. Said my clinic needed to do it.

Yeah probably around 100%, from what they looked at yesterday. It can vary from test to test apparently, but only a tiny few seemed to be good for ICSI and not paralysed by these antibodies. Apparently the lister think washing is limited help according to something old that i read but we will discuss the washing and the pred and hope they agree we can try.

It’s so exhausting that you get this far in and finally someone explains why the MFI is how it is for us. We needed that info years ago ughhh.

Sorry @seven201 I think moving onto a FET sounds like a good idea.

@Anonbaby ah there is someone with a similar name on Reddit, you are welcome to join us and chat on here.

@Enfys23 I star pred and clexane from cd7 which is much earlier than a lot of clinics advise.

@VenusStarr I'm cd1 today and in a modified natural FET

Oh no @thislittlebird there are some useful subreddits on sperm where you will find loads of info, www.reddit.com/r/maleinfertility/ and www.reddit.com/r/dnafragmentation/

Has anyone had moxibustion at acupuncture, the acupuncturist gave me some to do at home, it's like a cigar width incense stick, I needed to buy a blow torch to light it properly, anyway it feels like I just smoked 10 packets of cigarettes. On the plus side I have to equipment to make a crème brûlée now.

@VenusStarr
I’m sorry you have covid. I did delay my egg retrieval by a month after covid last year. It did affect my husband’s morphology but that could’ve been due to stress.

I’m starting to get anxious about my FET. I have a scan tomorrow and did go back to acupuncturist today after she has been unwell. She wears a mask and is a lot better but did cough outside of the room. I won’t go back again as it’s making me feel worried.

@Gardenlady543 You must be starting your transfer cycle soon. Good luck with your baseline scan.

@CailinInUK How are you getting on?

That made me smile @Gardenlady543 love crème brûlée! I've got everything crossed for you this cycle. When is your first scan?

Thank you @2021ivfagain I'm negative now but feel quite low in energy.
I'm sorry you're worried about your acupuncturist's cough 😔 it's no consolation but I had no 'typical' cold symptoms yet dh has been full of it. So it may or may not be covid. But you have to feel safe and comfortable, especially when it's not cheap!

Oh @thislittlebird I'm so sorry 😞 it feels like such a lot of wasted time. It does sound like there's hope with doing ivf but all sounds quite overwhelming. I hope you both get good care and support with it now. X

Hi everyone. Sorry I don't comment much but I still check in every day and still thinking of you all.

@VenusStarr sorry about the Covid

@thislittlebird it's so distressing when you get results like this. Is there any point re-testing or is this 100%. I know it's not the same but one of our tests showed nearly all of DPs sperm was damaged and the test turned out to be an error. Don't want to give false hope but these extreme results are sometimes worth double checking.

@Gardenlady543 good luck with this cycle

@seven201 still hoping this month will work out for you

Sending love to everyone else. Am always here, if quiet x

@Gardenlady543 when my acupuncturist used moxi it was just on my legs...the bundle got turned upside down and the smoke just dropped onto my shin....was weird and almost burny but not quite!

I'm so sorry you're all finding out important info so late into it.....I have an inkling this may happen with us 3.5 years down the line and 3 ivf cycles later. I have pcos, endo, ME all of which have inflammatory and autoimmune elements and husband had torsion and fixation as a child and has normal motility and morphology but count never more than 13 m/mil and volume of 1ml.

We're going to be looking at private shortly but there are not many at all close to us within a 4 or 5 hr round trip that will even consider immune protocol for me. They'd probably do hubby's frag test but unsure about his antibodies (finally got him a urology review who felt it could be a possibility) all specialists here seem to just focus on me and not the men. It's awful knowing that other people are experiencing the same but makes me feel less alone too. Hoping you all find some positive options somehow.

Does anybody here know much about afc and fsh as ivf postponed twice now as one or the other wasn't right and I'm very confused!

I'm attempting to catch up...

@thislittlebird gosh, sorry to hear about the anti sperm antibodies. Another blooming hurdle! I'm
Sorry about all the wasted time. I've been in a similar boat before, it's so bloody annoying when you think of the time, money and emotional toll from it.

@Enfys23 I asked my ivf clinic for pred and they wouldn't give me any without evidence and they also wouldn't test me. I was tested at CRP and now take it. If they're offering I'd just take it personally.

@CailinInUK glad to hear you're getting started again.

@Gardenlady543 hahaha at the moxibustion. It's recommended for helping to turn breech babies so I nearly had it then, but was then told I couldn't due to high BP. It sounds very intriguing!

@2021ivfagain Maybe give it a week then go back to the acupuncturist if you like.

@Janefx40 thanks. Hope all is well with you. Have you found out the sex?

@kerrym87 I'm sorry but I don't know much about them. It sounds like you fit in well in this complex club we have here on this thread. I think finding the right clinic is key. I regret where I went for ivf - I chose the closest to work, but would have been further along by now if I'd gone for a more thorough one.

No news from me really. Official test day is tomorrow but as I think I ovulated a day earlier/day of trigger I'm 99% out. Will test again tomorrow though but am sacking off shoving progesterone in tonight as my mini act of rebellion. I did manage to book a smear test though .

I’m on cd7 today and had a lining check. It’s at 8.1mm already with 225iu meriofert every other day. I’m starting to feel upset that this is it and I won’t get more chances to make more embryos. I’m really hoping I have a normal embryo in one of the 7 day 3 embryos frozen. I have 3 that are 8 cell so I’m hoping for 3 blastocysts. They were frozen at day 3 as it was set up initially for embryo batching. This was my first cycle at 40. Everything changed when I got closer to 41 and fsh rose. I had my son at 39.5 and got pregnant with him at 38 via IVF IMSI.

I feel upset as I could’ve done more egg retrievals in 2021 when egg quality was good but due to not renewing my passport quick enough and not giving me warning about it they cancelled my appointment and I could only do one good cycle in 2021. So now I have to accept it. I’m hoping I’ll be lucky but I’ve had so much bad luck I don’t know if you can have success from one cycle at 40.

Sorry for rambling on but starting to get scared. I love my son so much and just wanted him to have a sibling and grow our family.