Embryo Banking Support Thread / PGS wait

[ForeverAintEnough]

Hi all, I’ve just name changed but I’ve been on here loads and chatting to many of you under different user names ( irrational fear of being outed!). I wondered if there was interest in a ‘no transfer happening’ group? So those doing embryo banking or PGS or whatever.

I’ve just done one round of embryo banking and found the normal threads difficult with discussion of hoping for a Christmas pregnancies etc.

We are unfortunately taking the long way round with 3 rounds and no transfer. It looks like my first transfer might not be until June 2021.

If anyone wants to jump on feel free!

About us: Me 34, DH 36, TTC 3 years. Both male and female issues. x3 rounds of IVF all failed. Moved clinic to Lister for 3 rounds of embryo banking and PGS. One round of embryo banking just finished with x3 blasts sent off for PGS testing.

@2021ivfagain I am so sorry to hear that none of the eggs fertilised. It’s extremely frustrating and upsetting when this happens. Especially after all the effort that leads up to a cycle. I didn’t take DHEA - when I read about it I felt it could mess with my period timings and I felt time was short at my age etc so I don’t know much about it - not sure how long it takes to get out of the system. I researched improving egg quality a lot when I was doing my rounds as I was 40 plus. Honestly, I wasn’t too convinced by much as there seem to be so many contradictory or inconclusive studies. As I went through rounds I somewhere felt it was just luck of the draw in any given cycle. My consultant did add IMSI and Human Growth Hormone for me which did seem to help the fertilisation and blastocyst conversion slightly and she recommended CoQ10 from Zita West which I took as well - but I am sure you have already tried all this. I did end up with a sugar free protein rich diet too. But seeing as 2 of my 4 collection rounds ended up with hardly any fertilisation and blastocysts I can’t say I managed good egg quality consistently. Your last round may have the PGS normals in it (🤞) Btw I found my Day 3, 8 cells, were the one that ended up as euploids. I really hope you have a good next round.

@2021ivfagain the stress is totally understandable with your parents and trying to this at the same time. IVF is highly stressful in the best of circumstances. I had got very overwhelmed with it and was signed off from work with stress for the first time in 15 years and a lot of my high profile role at work was taken off me and given to colleagues. After hitting the low point I worked to lift myself out of it. I think the counselling advice is good. I didn’t get round to it this time but have always found counselling helpful in the past. The only way I could cope with IVF was first to accept that I feel crap and it’s actually ok to feel like this. I am feeling negative because I have reason to and it’s a rubbish situation. Once I took the pressure off myself I strangely felt better almost. I also accepted that it would mean that other things won’t go as well, be it work, personal home life etc but I had a purpose here and was going to see it through with an end date in mind if it doesn’t work. I also started chunking the whole thing into 1 or 2 week blocks so I would only think that far ahead. I realised if I think of everything at once I was overwhelmed. I am a bit of a fate believer so I also told myself that if it’s meant to be it will work out and if not it won’t and no amount of self blame (in my case it was things like I should have done it when younger or my very high BMI will limit success). Lastly I accepted I just couldn’t control it - be it the timings, the nurse errors, the rates of fertilisation or blastocysts, euploids etc. i had to do the best in any situation and just let it be. All of this is easier said than done but I have been trying really hard to manage my mind through it.

Hi @2021ivfagain I'm sorry I only just saw the posts. I'm so sorry about your fertilisation. That totally sucks! Ugh CRGH are bloody annoying - I sometimes wonder how they get such good stats when they are so slapdash. Don't worry too much about the DHEA. It will start leaving your system straight away and your levels will keep dropping until it's gone.

I find the stress comes in waves. I have big moments when it's all overwhelming and then things settle for a bit. I think @Sarahk20000 is right. There's no way to avoid the stress so accepting that it's a shit situation and we've every right to feel crap about it, is the only way.

The only other way I know to reduce stress is cigarettes and alcohol - but probably not advisable in this situation

Sending you lots of love 💐💐💐

Xxx

@Lola245 welcome xxx

@Lola245 I should have said welcome too. Good luck in your embryo batching journey. You are in the right forum for it. I found being on here invaluable when I was doing my rounds.

@2021ivfagain I'm so sorry about your recent round and that DHEA is the culprit, and that CRGH made you take it even though you actually had high levels. Why did they think your next round wouldn't be as good as the round in November? (How could they ever predict that?) I'm sure it will come out of your system quickly but that sounds so frustrating. It is alarming how DHEA is often offered as a solution but there are clearly people for whom it backfires badly.

I'm at CRGH too and have been taking DHEA for nearly 2 months. This month was my first IVF round so I don't have anything else to compare it too. But when I've asked Dr Saab in the past if I need to have my dhea-s/testosterone levels tested monthly he said no, it shouldn't matter. My testosterone was definitely low, dhea-s low but more on the normal end.

Does anyone at CRGH understand why they freeze embryos on day 3 if you are embryo banking, rather than letting them go to the blastocyst stage? They have frozen four day 3 embryos on our first cycle, but I feel like we'd have much more info if we knew how many made it to blast stage on this cycle...

@Lola245 on this board, we have all tried to understand why CRGH do this. I was told it was just what they did and preferred to grow all of them together from day 3 to 5 in one batch with your last batching round and send for testing in one go. I couldn’t see why they didn’t just biopsy as they went along. It must be to do with their PGS cost being for up to 8 blastocysts. The freezing refreezing bothered me too but they said it was minimum impact and not to worry about it. It worked for me in a way as I think I would have got very disappointed if progress was bad in one round and bringing it together at the end gave a larger number of blastocysts to test from and higher chances of finding some euploids in there. But yes it’s a strange approach and I can’t say I am entirely convinced by the reasoning. It takes a lot of patience to get through.

@SarahK20000 and @Lola245
Hi both.
I’ve been told it’s poor egg quality, high stress levels and age. However, my November cycle was fantastic. They are polar opposites. I feel more under pressure now and hopeless.

I’m taking at least two months off to prepare again with acupuncture, lots of supplements I’m already taking and wheatgrass twice a day. I did ask for estrogen priming before and was told there were too many variables. Now I’m told I will be doing estrogen priming next time. My amh and fsh have always been good but I think my fsh and stress affected things. Dhea gave me too much energy, affected my mood and sleep.

I feel really hopeless. My dhea level was 14.5 before I got it tested which seemed high. I’m 40 years old and I’m giving up hope now. I have a son who is 14 months old but wanted him to have a sibling as I wanted him to have a better life than I did. I was an only child.

@2021ivfagain you definitely can't give up hope! I obviously don't know the history of your situation so sorry if this isn't helpful, but that's great you have good AMH and FSH - yes FSH might fluctuate due to stress but if your levels are good on balance that means you are in a good position at 40. (I'm saying this as a 40 year old with high FSH...) I'm sure a break from DHEA and acupuncture etc will be what your body needs for the next round. Your son is really quite young and you have time. It must be quite tiring going through these cycles with a baby... My son is 2 and at 14 months was not sleeping very well so I would have found that tough.

@Sarahk20000 thank you for your reply, I'm glad you have found their day 3 embryo freezing mystifying too! I'm so glad to have found this forum. Fascinating that so many people on this thread are with CRGH - are they one of the main UK clinics to do embryo banking?

@Janefx40 thanks for the welcome too.

@Lola245 I think some other clinics do batching too. My reason for choosing CRGH was their success rates for over 40s. I was trying to decide between them and ARGC who similarly have good success rates for that age group and were recommended to me. I went for CRGH because of the PGS testing and batching emphasis as opposed to fresh transfers (and worry about whether euploid or not with ARGC, and what felt like more appointments at the last minute which I would have struggled to accommodate and higher costs in ARGC). But over the year and half I have kept thinking sometimes whether I chose the right clinic or not. I am currently pregnant from my FET on 25 January though only 4 to 5 weeks in and need to see if it sees through term or not. Am extremely anxious about whether it will but time will tell.

@2021ivfagain I am sorry that stress and egg quality are playing a part. You are right to let the DHEA work through your body but I wouldn’t lose too much hope. If you had one good cycle you can have another. Fingers crossed your next baby is in one of the batches. Give it another shot and see what happens but don’t give up yet (easier said than done I know) as IVF has so many ups and downs.

@Lola245

Hi. Thanks for your kind words. We have mfi (lower morphology), but that has improved with supplements and good diet. I did have good amh and fsh but I think my fsh was elevated last time. I used to have good egg quality. My consultant said it’s not a good sign. I feel really lost.

I just hope the next cycle is not terrible. I did stim for an extra day this time and had a lead follicle so did not respond so well. I did have 13 follicles but they were not growing at a good rate.

@SarahK20000
I’m pleased your pregnancy is going well. I remember how anxious I was in the first trimester but it gets easier.

I have a consultation next Tuesday so I’ll see what plans will be in place. Did you do acupuncture at all? I did when I was doing IVF for my son. It all adds up. I’ve dropped some of my work as it was getting too stressful.

@2021ivfagain thank you so much and for sharing your own anxious experience. good idea on reducing work, as that just adds to the stress. No I didn’t do acupuncture as was paranoid about going out and catching covid - but my consultant did recommend it. I hope your consultation goes well next week and they put in a good robust plan for you.

@2021ivfagain I know it can seem hopeless and I also know that when you turn 40 it feels like you've crossed over this terrifying barrier and it's all infertility and doom and gloom over this side. But it really isn't for everyone. I had my DD when I was nearly 42 and I'm not exceptional. My AMH was around 13 at the time so good but not unusually good.

FSH can fluctuate month to month which is why ARGC often ask people to wait a cycle or two if it is high. It can be lower the next month. High FSH isn't great for IVF because of how it interacts with the meds (I've said all this before so I don't want to bore you!). Persistently high FSH does signal a decline in fertility and should correlate with AMH and AFC (inversely). DHEA is good for lowering it which can help with stims but obviously only if you have low testosterone. But high FSH can just be temporary.

It could well be that you had a random couple of months of high FSH and that screwed up your stims.

@Lola245 I also think CRGH just do day 3 freezing for convenience and financial reasons. They said to me that it's easier to freeze and unfreeze day 3s than blasts. And because of the costs they biopsy at the same time. Yes it's annoying as you've no idea how many cycles to do because you don't know how many blasts you have.

Xxx

@Janefx40 thank for your insights! I was considering CRGH at some point but this thing with day 3 freezing puts me off even more. I made my decision to go with Lister anyway. However I don’t understand how such a leading clinic will do day 3 freezing, unless there are just 1-2 embryos when it makes a bit more sense. But there are so many evidences and leading clinics outside UK grow it to day 5 because day 0-3 shows information whether the egg is ok while day 3-5 indicates whether the sperm is good enough. Growing embryo to day 5-6 is definitely half of the success of ivf. Great to learn from each other 🤗

@K8dferXdder CRGH also believe in day 5 blastocysts. It’s just that when batching they wait until the last batching round to grow all the Day 3s to 5/6 together at the same time and then send for PGS testing together paying for a batch. What people find frustrating when they are embryo batching is not knowing until cycle 2 or 3 how many blastocysts they have which made it to Day 5/6. Lister is meant to be good and maybe test as cycles go. I don’t know anything about them. But I must say I think CRGH are an excellent clinic overall.

@Sarahk20000 thank you for explaining! Now it makes sense! 😊 glad to hear good words about them and they must be good if they are in top of the charts. And as they are a bit more expensive than Lister, there must be a reason for it.
Learning so much from you ladies every day 🤗

I asked Dr Saab at CRGH yesterday to explain the day 3 freezing, and he said it was because the embrylogosts prefer to biopsy fresh blastocysts, rather than frozen and thawed blasts. So the idea is to wait until your final round and let all the day 3 embryos develop together to day 5 and then biopsy them. This makes some sense to me. He did say I'd have the option in my second round to let all the embryos go to day 5 if that would help us decide whether or not to do a third cycle.

Could I ask how those of you on here decided how many rounds to do before PGS testing? Ideally I'd have 8 blasts if only 1 in 4 are likely to be euploid, but I imagine there's no way I'd get that many from 2 rounds given that we only have 4 day 3 embryos now. So in my head I'm already assuming we'll have to do 3 cycles (though my husband is hoping it's just 2!) But it is frustrating there's no way to test as you go so it's a guessing game.

@Sarahk20000 congratulations on your pregnancy!!! That's so exciting - though I know the early days are stressful of course. Are you getting good early pregnancy care from CRGH? When is your first scan? Fingers crossed for you.

I had initial consulations with ARGC and CRGH, and ARGC were happy to cycle with me when my FSH had been 10. But then when my test in December was 15, it was clear they weren't the right clinic. I found the idea of having to wait another month to see if my FSH went down unbelievably stressful (like if stress makes FSH go up, how would this news make it go down in a month...). And it just made me question their amazing stats and claims they deliver even in the most difficult cases, given that they have FSH cut-offs and therefore clearly must turn away quite a lot of people. So then when we met with Dr Saab and he seemed to have a plan it was a huge relief. He also recommended the DNA frag test given that we had two miscarriages before our son was born, and it turned out my husband has high DNA frag. So it just made me think we were in good hands. I've also been impressed by their general admin and punctuality compared to ARGC. But it's obviously early days for me...

Dr Saab sounded annoyed when I asked to get my DHEA levels tested, because he said they would be high, but that didn't mean that I shouldn't take it.

@Lola245 thank you. My first scan is on the 22nd. It all seems pretty standardised with meds mostly ending by 10-12 weeks pregnancy. If things go ok in the next few scans I may ask for a follow up with my consultant on whether to continue with the Inhixia/blood thinning/Clexane as I feel with BMI being high etc I might be a candidate for having it longer than the current finishing of it at 10 weeks. At the moment it all still feels quite anxiety inducing and like a much longer ivf round. I just want to get through the next few scans as I am extremely aware of how precarious this stage is - let’s see how it goes. I am not keeping high hopes to avoid disappointment. I have never been pregnant before so it’s all very new but I have zero symptoms so don’t really feel any different!
On the number of rounds, I just took it for granted I would need 3 cycles - if you are over 40 I would say that 3 is better. If your rate of day 3s continues this way, assuming a worst case of 50 percent drop off from day 3-5 you would have around 7/8 to test which feels safer (they say you ideally need 3 euploids per live birth or atleast that’s what my consultant was aiming for). Looks like Dr Saab is being quite thorough in a plan for you and CRGH overall seem good at the investigative things needed upfront to have the right protocols. I have never really known by FSH numbers, I don’t think CRGH checked it per cycle. It was 8.7 right at the outset pre the first cycle but it’s never been checked since or atleast I haven’t noticed it in my blood results. Good luck with your CrGH future rounds 😊

I should add though @Lola245 that whilst I thought 3 cycles was the safer option, my last cycle resulted in only one fertilised egg and no blastocysts. So really it was 2 cycles that led to 7 blastocysts and 3 euploids but at the time I didn’t know how many of the 12 day 3s would make it further so I opted for a third round.

Anyone on this thread doing an FET with a tested embryo soon? x

With the freezing at day three and testing at the end of the batching, I still don't understand why CRGH can't grow to day five / six each round, biopsy as they go and freeze the samples for submission to the lab at the end of the batching. I feel they should be really clear and transparent about the rationale for their approach, as it's so frustrating.

In my case we have PGD costs on top of PGS - if we knew at the end of round three that we had fewer blasts than we wanted, then we could potentially add in a fourth retrieval. This is a real worry for me as in my last round I had ten great embryos on day three, yet only three blasts by day six.

Anyway, good to read the various updates from everyone. I'm on day six of norothisterone before starting stims for retrieval one in my next cycle - it messes with my sleep so I'm counting down the days until I can stop.

@Sarahk20000 that's amazing to have 3 euploid embryos! I'm just hoping for two (though obviously would be delighted for more). So how many day 3 emrbyos did you get to result in those 3? I agree, I'm certain now we will need three rounds too given that I'm not producing many eggs (though at least they mostly turned into embryos this round). CRGH has agreed that for my next cycle we'll try to start on day 2 for stimms, since I had quite a lot of small follicles that didn't end up producing eggs so hopefully an extra day might help.

@Rosemarypots It sounds like our next cycles will be around the same time as I'm on day 6 of norethisterone today. I already feel impatient to begin again, though it's nice to have a couple weeks off of the needles.

I'm sure this is the million dollar question, but for those on here who have done multiple cycles, and were more successful on certain cycles, was there anything you did differently on those cycles? Supplements, protocol, lifestyle etc? Or was there no rhyme nor reason...

I really appreciate all the advice on this thread so far!

@Lola245 I had 12 Day 3s (6 each from two rounds - i did four egg collections and 2 two didn’t get any). The 12 translated to 7 blastocysts and 3 euploids (2 were day 5s which were both euploid and the rest were all day 6s - the quality of all the blastocysts was mainly B- and C so not great). I don’t think I did anything different in the successful cycles. But from the first cycle to the second where there was an improvement in number of eggs I went from short to long protocol (so down regulation with burselin worked better for me and I didn’t get as many lead follicles with more even growth across follicles), I had Zita west COq10 and we used IMSI rather than just ICSI and added human growth hormone. But this was the identical protocol for the last round which resulted in only 1 egg fertilising out of 17 so yes it does seem a bit random at times!! I have throughout gone sugar free and ate mainly proteins (but this was because I needed to lose weight). I hope you and @Rosemarypots both have good egg collection rounds this time. Not long before you stop your Northisterone.

@tulipsandsnow let’s see if people come back to you but I think a lot of people at the moment are at the embryo batching stage so mainly in the egg collection rounds on here. A few of us just finished FET rounds.