Seven abnormal embryos - what now?

[Holdingontohope36]

My husband and I found out this afternoon that all 7 of the embryos we sent for PGS testing are abnormal. Devastated doesn’t even come close 😔 Two embryos were from our first IVF round, five from our second round. We tested them all following a chromosomal twin miscarriage from our first round, as we were keen to avoid another disaster. Before this, we suffered two natural miscarriages and a chemical pregnancy, but were told the problem was to do with NK cells. I believe we have now found the real reason though. We have yet to speak to the doctor, but the embryologist said not to give up. As we’ve both had karyotyping and don’t have an underlying genetic issue, he said there’s hope we’ll eventually find a normal embryo. But how likely is this? Does anyone have any stories of hope? Feeling very low and not sure if donor egg and sperm is now our only option.

[Ivfgotadream]

I had this also when I PGS tested age 36 albeit I didn’t have as many to test. I decided not to test again and from 2 follicles 2 eggs on my next egg collection I got 2 blastocysts and am now pregnant with twins. I’m very sceptical of PGS testing now having gone from 100% abnormal/mosaic to suddenly having 100% apparently normal ones (all NIPT testing etc had come back normal)

I also decided to PGS after 4 previous miscarriages as all other testing had come back normal

Did the clinic say If they were all fully abnormal or where they were mosaics or segmentals? Most clinics will allow you to transfer a mosaic in the U.K.? I transferred a low level mosaic -11 but it was a BFN but I’m a member of a few Facebook PGS testing forums where members especially in USA transfer abnormals and mosaics all the time and many have had healthy babies

[hifer in reply to Ivfgotadream]

Thank you so much for sharing. On the back of your message I’ve also just joined a few Facebook groups for support as we do PGS testing too. Are there any groups you would specifically recommend?X

[Ivfgotadream in reply to hifer]

I joined “my perfect mosaic embry” as I had mosaics as well as complex abnormals and that had several thousand members and also “PGS/PGTA abnormal embryo support” but that one is a bit quieter?

I’d also ask your clinic for a copy of the PGS report - most of the testing is done by Cooper Genomics and they should offer a genetic counselling phone call to go through the results?

There is lots of research available via google in respect of what chromosomes are impacted and which ones are “safer” to transfer than others

[hifer in reply to Ivfgotadream]

Thanks so much. I think I’ve asked to join 4 in the end! There’s so little available about PGS experiences! I had a very informative telephone call with the embryologist with our last PGS results (more so than the previous 2 tests I felt). However I will ask for the report. That’s a good idea so that I can go through it. Thanks so much for your help x

[Holdingontohope36 in reply to Ivfgotadream]

Thanks so much for your reply. I am also 36 (35 when I did the first round) and my husband is 34... We can’t get our heads around the fact that we keep producing such terrible embryos. For our age group we should at least have got two or three from that batch. And the majority were good quality blastos (4AA, 4BB etc). But they were all abnormal (no mosaics). So I’m starting to doubt the reliability of PGS. Like you, I’ve done two short protocols and I produced a lot of eggs (15 last time and 19 this time) but fertilisation has been poor. Were you worried about transferring two non-PGS embryos after your experience? What did your new clinic say about PGS? Did they advocate it?X

[Ivfgotadream in reply to Holdingontohope36]

My fertilisation was poor too - over 2 cycles of short protocol I got a total of 28 eggs and less than 30% fertilised and 4 average quality blastocysts. And then the rubbish PGS results.

Mine only improved once I’d changed to natural modified IVF - targeting much fewer eggs but improving quality. Over 2 cycles of natural modified i got 9 eggs but 100% fertilised and 4 top quality blastocysts. 2 are my twins and the 2 even better graded ones are still frozen.

I was nervous about not testing so I did pay for the NIPT Panorama genetic testing done via blood test at 10 weeks which looks for several different chromosome issues (although not as many as if having A Singleton as they can’t test for as many with twins). That put my mind at rest a fair bit. Also getting to each milestone helped as most babies with chromosome issues don’t survive long in the womb and miscarry- I pored over my measurements and heartbeat rates after each scan. I had my 20 week anomaly scan this week and neither had any issues identified although one twin is measuring much smaller but I did transfer blastocysts at completely different stages - ie one hatching and the other expanded, one was frozen and the other was classed as fresh as was originally frozen on day 3 so was very active when they did the transfer

[hifer]

I’m so sorry to read this. I don’t have a solution for you I’m afraid but just wanted to send love. X

[Bhoga]

Our doctor had told us that as per rule in UK, they can’t transfer PGS abnormal embryos and therefore he counselled us not to do the PGS testing.

[Holdingontohope36 in reply to Bhoga]

Thank you for your reply. Can I ask whether you had success with non-PGS embryos? x

[Ranchu90]

We also tested our embryos. My personal conclusion is that medications during stimulation can also affect the quality of embryos. Did you use same protocol for both cycles that been PGS tested?

I will tell you what happened in my situation. We tested from 2 cycles as well our embryos. First cycle unfortunately we had only 1 blastocyst that came back as mosaic, it is a 5AA and I was very surprised to see that it wasn't normal, it was the only one that survived the whole cycle. I am not 30 years old yet so I thought that definitely must be normal, at least one embryo per cycle, but I was hell wrong. And second cycle from 4 embryo reaching blastocyst we have 3 normal embryos. We changed the protocol completely and that was the best decision that out doctor made for us.

I had 2 biochemical pregnancys from 2 different cycles in the past so we wanted to test our embryo because of that. In few weeks I have my transfer booked...🤞

[Ivfgotadream in reply to Ranchu90]

I agree. My abnormal embryos came from short protocol IVF cycles. I decided not to test again but changed protocol to natural modified IVF and on the next egg collection I got twins 🤷‍♀️X

[JuicyLu in reply to Ivfgotadream]

I’d be really interested to know what you changed in the cycle where you did better please? We had what looked like a great round but only 1 normal embryo out of 9. If we do any more I feel like we should change something x

[Holdingontohope36 in reply to Ranchu90]

Thank you so much for sharing your story. Can I ask what protocol you were on before and which you switched to? I feel your pain - we also had good quality embryos in the mix (we had a couple of borderline quality ones but all the rest were 4AA and 4BBs). It doesn’t make much sense! x

[Ranchu90 in reply to Holdingontohope36]

On my first cycle I was on Meriofert+orgalutran (equivalent of Cetrotide) and second cycle I was on Meriofert 225iu + progesterone pills MPA, this is a very uncommon protocol but is the best I ever tried out of 4 cycles. Clinic is using it for egg donors because of the high success outcome.

I must say that I also took DHEA and ovusitol on my last cycle but I don't think this contributed that much but you always can try.

JuicyLu and Holdingontohope36 Good luck both ❤️🤞 if you have more questions please feel free to ask

[Violet180]

We tested 7 embryos from 1st and 2nd rounds as well. All abnormal.

We were devastated we had nothing to transfer and try so we didn't do any testing on 3rd and 4th round.

Had 3 early miscarriages and now currently 18 weeks pregnant with a girl who passed harmony testing. No idea if this embryo was from the 3rd or 4th round though.

[Holdingontohope36 in reply to Violet180]

Sorry to hear about your losses and congratulations on your pregnancy! Your story gives me hope, so thank you. I’ve already experienced three miscarriages and a chemical pregnancy and I’m so scared about having more. But I also don’t want to PGS test embryos and potentially throw away decent ones! It feels like an impossible situation 😔 xx

[Violet180 in reply to Holdingontohope36]

I know it can be so hard when they call and tell you they are all abnormal. You think that all your embryos will be abnormal.

But I believe you can get normal ones, it just depends on how long you can try, how much you can afford and how much your heart can take. I am soooooo glad we stuck in there.

We had agreed to try 2 more rounds before donor eggs. But my husband and I both had good insurance that covered the 1st 4 rounds.

My doctors kept telling me the same thing, they just believed I was waiting for the lucky embryo. The PGS question is hard, I and been through so much that we actually were leaning back towards PGS because I didn't know if I could take more miscarriages. Even if you have no fertility issues, 1 in 3 pregnancies ends in miscarriage. But then I go back and forth, because what if some of my Aneuploid embryos were just micro deletions? My successful pregnancy could have micro deletions still. These micro deletions may mean nothing.

We transferred 2 at a time. I am 42.

I'm sorry to hear of your losses. Personally I would keep trying with your own eggs.

[articsnowfox]

How old are you? Did you pre-treat your eggs beforehand? I took DHEA for 3 months to improve the quality of my eggs and ended up with a take home baby at the age of 44 years (I was 43 when I did the retrieval though). I also had a slightly earlier retrieval (when the lead follicle was 18mm) which i think helped with the quality (some studies have shown early retrieval results in better quality eggs, as does DHEA). Another supplement worth considering is co-enzyme Q10, although the evidence isn't sooo strong with that, but it has minimal side effects so maybe worth taking anyway. A drug worth considering is human growth factor - this also has some good evidence behind it, and is something I would have added to my treatment if my cycle had failed again.

[Holdingontohope36 in reply to articsnowfox]

Thank you for your reply and congratulations on the arrival of your baby! I’m 36 but started ttc at 34. I had two natural pregnancies that ended in miscarriage and a chemical before turning to IVF just before my 36th birthday. I really appreciate the supplement recommendations- I’m on a huge concoction already, which were prescribed by a fertility nutritionist, but Q10 isn’t one of them (I am on ubiquinol though - is that the same thing?). Tempted to order these and add them to my crazy daily routine anyway! I’ve heard mixed things about DHEA, but I guess it couldn’t hurt... Can I ask, did you have to do multiple rounds of IVF to get your take-home baby? Did you do PGS testing on any rounds?

[articsnowfox in reply to Holdingontohope36]

Hi there, yeah, ubiquinol is the same as Q10 FYI, here is a good quality recent review/meta-analysis about DHEA which summarises the evidence: ncbi.nlm.nih.gov/pmc/articl...

Re. rounds of IVF, I did 2 rounds (5 transfers) to get my first son at the age of 40 (41 when he was born), and 2 fresh rounds (4 transfers, although 2 of the transfers were with blastocysts from the earlier rounds) at the age of 42/43 to get my second son I am lucky in that I have a good AMH level although I did have lining issues, hence the high number of transfers...

[articsnowfox in reply to articsnowfox]

I didn't do any PGS testing - I would have considered it for the rounds I did at 42/43 years but here in Germany, it is not allowed :/

[Jen999999]

I personally know two people who transfered abnormals and have healthy children. I'm in NYC

[jengi]

Hello, this rollercoaster is beyond cruel. I have no experience of PGS testing so have no words of wisdom. I only ever retrieved four eggs out of 5 cycles, only one ever made it to day 3 but didn’t stick. So we moved to donor & im 14 weeks pregnant today. I just wanted to wish you luck, don’t give up, that lucky egg/sperm/embryo will turn up some day. Big hugs Xx

[Holdingontohope36 in reply to jengi]

Thank you so much much and sorry to hear about your own long and difficult journey. I hope all goes well in your pregnancy! xx

[JuicyLu]

I’m so interested in this conversation because we recently had PGS on 9 embryos (8 aged 39 and 1 aged 37). Only 1 normal and 2 they didn’t get a good enough sample. Like everyone we were gutted and left wondering about PGS and whether we’d binned embryos that might have made it 😢

I think I was over- stimulated for this last round as I had 50 follicles and mild OHSS and I wonder if that affected quality, but the consultant said he would do the same again! (which didn’t fill me with confidence).

Another reason I am dubious is that several of the abnormal embryos scored extremely highly on the ‘care maps’ system (10/10). This just makes me question the whole thing.

I worry about my health in doing any more rounds. Really interested to know what people who had more success with PGS changed for later rounds xx

[Jumpppy]

Get the full genetics report! Also understand that there is a LOT of controversy around PGS. I had the same thing happen - Dr told me to move to donor eggs because everything was VERY abnormal. I got a second opinion by a Dr who is a specialist in PGS. (He is far away, I did a couple of virtual second opinion calls) he told me to request the full report and I found out I had some low level mosaics. He reviewed the report and we put 2 back 1 low level mosaic (M) and 1 fully abnormal (F) that he told me couldn't possible implant if the screening was correct. Preggo with M/F twins. Still early days for me and I need to get a CVS, but no signs so far.

I've known 1 woman will PGS normal end up with a trisomy-21.

BUT, I've never had a MC (ours is my age and severe MF)...so you have to weigh the MC risk and emotional impact against having a genetic children.

I would ask for report and trust embryologist. My current Dr said it is all about how many embryos you can get, esp to day 5. He said very rarely (almost) never will you see a woman who can make a lot of good blasts (and no uterine issues) and can't get preggo and delivery healthy baby.

We have a lot of untested embryos and we won't be testing any more. My Dr suggested this direction before my transfer, which turned out well.

DM me if you want...

[josephnsn]

are you sure pgs testing is the way to go. I have read articles about it not being that accurate