offload/sos/looking for hope

[Crazycatlady007]

Hi all

apologies in advance if this is a bit pointless but I’m on transfer number 4, day 7 and I’m pretty sure I’m out already. Feel like this one has made me more upset than usual, probably because I am losing hope which is unlike me.

a bit of backstory - 3 EC’s - 1st no blasts. 2nd one 3 day transfer not graded, one FET grade 4AB ended in miscarriage. 3rd one 5 day 4BB and one FET 4AC currently on day 7 of 2WW.

My transfer was just before 4pm so officially day 7 as of this afternoon.

I gave in and tested last night with a clear blue normal line test - whiter than white result.

Tested this morning with a clear blue digital and said BFN. Did an easy at home too and whiter than white again.

I ordered some FRER which have come today but feels so pointless.

Symptoms wise…nothing major but headaches and some cramping and a bit of nausea and extra hungry so I really thought we might have a chance this time.

I know I need to wait until my test day but just feel it’s over already so I’m thinking about next steps.

can anyone impart any knowledge about EMMA/ERA/ALICE testing please?

I know donor eggs is going to come up with my consultant but I don’t feel ready yet.

Interested in the additional testing but from what I can gather they can take months and at 38 I am really concerned about my age too.

If anyone has any observations/advice/info/anything I could try, I would really really appreciate it

feeling a bit fragile today so am super grateful for this group xxxx

[leo1980]

hello

[Millbanks]

Hello lovely,

I'm sorry to hear about your situation. It's hard to have hope but also try and stay on a level... the 2ww is the worst.

I know a lot of people on here do get late positives, so you're definitely not out yet.

But if you are, then I would say that the ERA test is probably not worth your time / money - as you've already had implantation. This is usually done when you've had no luck at all. As you miscarried (so sorry to hear this too) then it's more likely to be genetic issues with the embryo or just bad luck.

You could have your embryos genetically tested. I had 2 negative tests with PGT-A tested embryos which baffled me - then I had a positive with one which then miscarried. Sometimes it really is just luck. There is no silver bullet.

You could have the Alice / Emma test - (they would probably do the ERA at the same time as it tends to come as a package) and if you do have an infection (which does sometimes happen after a miscarriage) then they would prescribe you antibiotics and probably probiotics. This usually takes about 6 weeks from the start of meds to results.

I hear what you're saying about age, we have it drilled in to us that after 40 it's game over, but it's just not true. There is definitely still hope and if you aren't ready to try donor then don't. You do whatever feels right for you xx

[Crazycatlady007 in reply to Millbanks]

Hi Millbanks

thank you so much for your reply - it has made me so emotional that you’re so kind (damn all these medications and hormones 😂😂😂)

We briefly discussed all the tests and my consultant gave me some leaflets and more info etc so I’ve been reading through those. Makes sense about the ERA thanks!!

He has also suggested an immuno profiling which is around 1.5k I think. Part of me thinks we should just do the whole hog and then we know what’s what.

Do you think it would be worth going ahead with another EC first and then doing the tests in between any potential transfers?

I don’t know how much difference a few months could make to egg quality etc - I completely agree about the 40 thing and need to give my head a wobble. I do try and remind myself that it’s a huge positive that we did have implantation so I am hoping it’s just bad luck. Have also been relentlessly looking for info on how to improve quality like I’ve lost the plot!

I’m trying so hard not to write this off until Friday but our minds play tricks don’t they! X

[Millbanks in reply to Crazycatlady007]

Yep those hormones will get ya - also its a massively emotional process so even if we weren't on loads of hormones we'd still feel it keenly...

So I ended up having most of the tests done over 2 years but we had never had implantation - the one that was key for me I think was the immuno profiling - my natural killer cells were very high and we had success on our 6th transfer after starting steroids and intralipids (although jury is out on whether the intralipids actually helped)

I had a 3 month gap between egg collections at one point and during that time I took 600mg ubiquinol and 1200mg NAC every day (plus loads of antoxidents and whole milk) and the next cycle we got fewer eggs but a higher ratio of eggs to blastocyst (previous cycle had been 18 eggs but 4 blasts - this one was 12 eggs and 8 blasts) so it's probably worth working on this a bit before going in to another egg collection. Your partner (if you have one) can take the same. Those supplements are basically energy givers so help the eggs / sperm to divide correctly so keeping them healthy (increasing quality) in theory anyway - non of this is guaranteed of course - we can but try!

I was so bad at giving myself arbitrary deadlines for things - for some reason I desperatly wanted to have a baby by the time I was 40 and I really stressed myself out with it - and really it's just pressure we put on ourselves from those around us. Don't fall for it! You still have time! xxx

[Crazycatlady007 in reply to Millbanks]

Thanks so much for all this info - it’s really useful!

I have never even heard of either of those supplements - did they come via your clinic or bought yourself?

I’ve been thinking about the tests all day and think it’s defo worth doing them so we know where we stand. I think I’ll just wonder ‘what if’ otherwise. It might actually save us time in the long run.

This cycle I added probiotics and blood thinners but sounds like there’s more I can do!

It’s just so disheartening getting negatives isn’t it but need to remember it’s all learning and sometimes just bad luck. Just got to keep going! Weirdly I think I’ll just feel better after OTD so I can get back to practical mode x

[MBean0813 in reply to Crazycatlady007]

I could definitely see how another egg collection or two could help ease your mind. Get some blasts in the freezer and then have yourself looked over while you know at least they are there for you when you are ready. 🤞Best of luck 💛

[Crazycatlady007 in reply to MBean0813]

Thank you so much! I’ve added this to my list of things to discuss with my consultant to get his view. If I’m thinking correctly most of the tests are about implantation and how your body responds to the embryo so will be happy if we can do it that way around. I guess if he thinks differently then I’ll get a proper reason why too xx

[Tinkertinkerbell]

Hi, the EMA, Alice and ERA worked for me. I had 4 failed transfers - one was a double transfer. 2 of those transfers were ‘outstanding’ embryos from DEs and everything always looked good so it was frustrating and perplexing. So I did the EMA, Alice and ERA. The result was that I had no good bacteria so needed LOTS of probiotics to establish a healthy microbiom. Also my lining was pre receptive on day 6 of progesterone (all my transfers had been day 6). I think this was crucial as it turned out I needed a day 7 transfer and an extra 30 hours of progesterone (which they timed exactly). I had a feeling that it was the timing that was all wrong for me. Then my 5th transfer worked! She’s now nearly 3 months old and napping on me :). I thought it would never work but it did in the end and I’m so glad I invested in the test otherwise I don’t think the last embryo would have stuck either. Also, when I had the transfer the doctor told me she was sure this one would work because they have had real success with the EMA Alice and ERA - and seemed to really believe in it. Good luck x

[Crazycatlady007 in reply to Tinkertinkerbell]

Thank you so much for your reply! And congratulations on your little one!

It’s stories like yours which give me the strength to keep going so thank you so so much for sharing.

Did the test results feel like they explained a lot or at least gave you further information to move forward with at the time? Sounds like you had good instincts to move forward with after having more info!

I have thought about the tests loads today and think I am pretty sure I’ll go ahead with them when I next speak to my consultant. I really really am praying they find an ‘obvious’ answer, whatever that may be!

My cycles and ovulation have always been a bit all over the place so it would kinda make sense for my optimal timings not to be the norm x

[RACMumm]

Hi, I hope you are feeling ok. I had testing done after 4 failed transfers with tested embryos. The first 3 were negatives and all medicated transfers. I then switched to modified natural and my 4th transfer was a positive but ended at 6 weeks. In the end I decided I would go for testing of NK cells and to ensure I did not have endometritis (equivalent to either the EMA or Alice test I can't recall). Because I was doing a modified natural I did not bother with the ERA as it wasn't really relevant as you know pretty much exactly when you ovulate. After having the uterine biopsy it turned out I had high level NK cells and was told I would need to do the Bondi method (clexane and steroids as well as intralipids & i also added vaginal probiotics for good measure). I am pleased to say that using that method and a modified natural cycle at age 46 (using tested donor embryo) was a success and my little lady is now 14 months old. The testing can be extremely expensive here in Ireland where I live so I travelled to a clinic in Dusseldorf who performed the tests at fraction of the costs. If you wish for me to pass on their details please let me know. It is a bit of a faff travelling but I only needed to stay one night and even with flights and a hotel stay I still saved around €800-€1000! Wishing you lots of luck and hoping for a positive outcome.

[Crazycatlady007 in reply to RACMumm]

Thank you so much for your reply.

Wow what a journey you’ve been on!! I am so so pleased it all worked out for you!!

Would be really interested in the details of your clinic thanks! I think we’re looking at around 2.5k for the immune and ERA,Emma and Alice so be interested to know how that compares to Ireland too.

Thank you for sharing - it really gives me faith this could work xxx

[Kitkat10]

hi, I’m sorry to read this, it’s a tough time and I know how absolutely draining the process is. 38 isn’t old and I don’t think DE should come up at your review imo. It’s helpful that the consultants offer options but you still have time with your OE.

I found the biggest frustration to be lack of answers but it is true that it can be a matter of numbers. On average, it takes three transfers to have success and that’s across all ages. I know that might not sound helpful but it’s really reassuring that you are making good quality blastocysts and that is a major achievement in itself.

I started IVF when I was 39, nearly 40 because Covid happened and messed it all up, and my son was born when I had just turned 41 , after 3 transfers, so you definitely have time. I only produced 1 blastocyst per egg collection. You’re numbers are better than mine, so hang in there there, I’m sorry it’s such a horrid process, good luck xx I hope good news comes soon xx

[Crazycatlady007 in reply to Kitkat10]

Hi Kitkat - thank you for replying.

It really is helpful and definitely puts things in perspective. Given the ‘average’ I thought one would have stuck by now but I guess maybe it will take us a few more because of my age. We’ve definitely meddled with the stims to try and yield a better result which has worked technically as the first cycle I got 13 eggs but no blasts, then around 6/7 but two blasts each of the next cycles.

People like you are living proof it can be done and give me so much hope. I just hate the parts like I’m in at the moment where it’s just limbo - waiting for Friday so it can be officially over and then waiting to confirm next steps etc. I’m finding it so much harder this time for some reason - just feel so emotional and having to carry on taking all the medication is like a kick in the teeth.

I really really appreciate you sharing as it honestly does help lots. I’m so glad it worked out for you! Xxx

[Kitkat10]

you’ll get there, you are doing brilliantly, keep going xx

[Bimsie1310]

Hi, I was in a similar boat last year. I was 37 and had 4 failed transfers (all high grade, non tested) and was looking into all the tests. In the end I just went for PGTA on a fresh batch and from this found 4/6 embryos were normal so it didn't really explain why I had so many fail before. I wanted to do more tests but clinic weren't keen so I just did a natural FET and somehow this worked and I'm currently pregnant! I wouldn't write yourself off at 38 as I actually got more embryos at 38 than I did at the two collections I did when I was 36!

Someone above mentioned ubiquinol which I ask took for 3 months prior to collection which I think helped. I also did an at home microbiome test which is much cheaper than EMMA and ALICE which showed I was low on good bacteria so I took some probiotics a month before transfer so maybe that helped too? I'm not really sure what was the magic that finally made it work.

[Crazycatlady007 in reply to Bimsie1310]

Helloo! Well firstly congratulations!! Absolutely made up that it finally worked for you!

We haven’t done any PGTA testing as our consultant thought it probably wasn’t worth it with getting so few each time. The cost would be the same for the transfer as the test so it didn’t make much difference except knowing in advance I suppose.

Out of interest, did you discuss your at home microbiome test with your clinic or did you just go ahead and do it? I’m a little concerned they might talk us out of finding our own. Was it a fertilisys type one?

Also re the ubiquinol - did the clinic recommend this or did you do your own research? I had a little google after the post above and wondered how it differed from coQ10 which I take already. Do you get it online? Xx

[MiniCeeCee in reply to Bimsie1310]

Hey Bimsie1310 can I check re Ubiquinol - is that Coq10? And if so can I ask how much you took? I’ve started taking 200mg per day, 3 months before my next egg collection… so hoping that might help a bit with quality!

[Bimsie1310 in reply to MiniCeeCee]

From what I have read, its the active form of Coq10 so easier for your body to absorb. I took 1000mg a day. No idea what the right amount to take is, I just found those on Amazon and gave them a go!

[Bimsie1310]

Hi, my clinic were not supportive of any extra testing and wouldn't do the ERA etc tests and didn't think microbiome had any impact so I just did it off my own back with a company called DAYE just to know I'd tried.

Again ubiquinol was my own research. My clinic were very much 'just keep going!' which I hated. I believe ubiquinol is the active ingredient in COq10. I just got some off Amazon.

Hope that helps.

[Crazycatlady007 in reply to Bimsie1310]

That’s such a shame! You’d like to think they’d do anything to help wouldn’t you!

So am I right in thinking that’s better than coQ10 then?! X

[Bimsie1310]

I think so but I'm not entirely sure, I just read it was better so tried it. Here is something I found online if it helps.

Our body needs to convert CoQ10 into ubiquinol before it can be used to create energy. This is Herculean work! And it can get harder with age since the body’s ability to produce CoQ10 and convert it into ubiquinol declines as we get older.

Ubiquinol is coined the ‘body ready’ form of CoQ10; it requires no conversion, which allows for immediate uptake and fast absorption. For those looking to address established health concerns, ubiquinol is an excellent choice to restore a good baseline.

I have no idea if ubiquinol helped or not as I did change a few bits at once just to know I tried!