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WWYD - PGS testing

(33 Posts)
Lavienestjamaisjuste Fri 27-Dec-19 10:32:33

Hi all, hope you're all ok, brief history - TTC since Jan 2017, 3x natural miscarriages, 1x TFMR at 16 weeks following 1st ICSI transfer, endometriosis and morphology issues.
Have 2x embryos frozen (1 good, 1 not so good and likely wouldn't survive testing). Clinic suggest doing another fresh round but with PGS testing this time. However, neither the post mortem at 16 weeks nor the testing of our previous miscarriage revealed any chromosome problems (I.e. they were essentially 'normal', no Downs etc.) so I'm wondering what the benefits of PGS testing would actually be? Plus it's just been downgraded to red by HFEA which does concern me a bit. As an aside, the TFMR was because of a major lower abdominal defect, probably caused by a random misfiring DNA, which we've been told is incredibly unlikely to happen again...
Anyway, we are continuing to focus on egg and sperm quality with lots of supplements, no excess caffeine and zero alcohol, and I'll be taking high dose folic acid this time, but I'm just thinking we might be better off going in for the FET of our remaining embryos rather than completing a whole new fresh cycle - I'm struggling to see what we would gain from PGS, other than I guess ruling out another miscarriage from a chromosome/ genetic issue. The PGS won't be able to identify any defects, as in our last pregnancy.
I'm just so tired of it all, and I understand my consultant in that she would really like to avoid more miscarriages, but to my mind that's never a guarantee, and we could potentially save ourselves a lot of money..
Argh, I just really don't know, can't really talk to anyone IRL, so would be massively grateful for anyone's thoughts/experiences.
Hoping 2020 is your year! Because 2019 can quite literally fuck off...
Thank you xx

itwasalovelydreamwhileitlasted Fri 27-Dec-19 20:28:40

I've had 5 miscarriages and decided to PGS on my second IVF cycle - we only got 2 blastocysts to day 5 testing- 1 came back complex abnormal and the other low level mosaic. In the U.K. you are not allowed to transfer abnormals so it was destroyed and we decided to transfer the mosaic (BFN)

We did PGS as it was the last test to try and explain our miscarriages and I suppose we did get our answer - that we aren't making good quality blastocysts- that being said I know people with similar results on their next cycle get all "normal" blastocysts

I'm not bothering with PGS on our next cycle - it increases the cost massively as you have to do a freeze all etc and you run the risk of not being able to transfer anything

I'm a member of lots of social media abnormal embryo groups and lots of members in USA where you are allowed to transfer them have gone on to have healthy babies (there are only a couple of chromosomes out of the 26 like the one for Down's syndrome (21) which can actually result in a live birth)

Lavienestjamaisjuste Fri 27-Dec-19 22:00:33

Thank you so much for your thoughts and taking the time to reply. I'm sorry for what you have gone through. I think I'm leaning towards just cracking on with the FET and not bothering with PGS as I'm not really sure what can be gained given our miscarriages have not been for chromosome reasons... I suspect we probably do make 'bad embryos as we actually had 7 make it to day 5 blastocysts but only 2 made it to freeze, plus the one we transferred. Anyway thank you again, your message has really helped clarify my thoughts - I was really unprepared for all the decisions you need to make. Wishing you best of luck with everything in 2020

Lavienestjamaisjuste Fri 27-Dec-19 22:02:21

Just for balance- is anyone FOR PGS testing? What made you opt for it in the end? Did it 'work'? Thank you!

LillyLeaf Fri 27-Dec-19 22:17:09

It's really difficult and I don't think there's an obvious route to take. For us we got 5 5day embryos in our 1st cycle. 1st transfer miscarried at 9/10 wks, 2nd FET MC at 6/7 wks, so we then pgs tested our remaining 3, all abnormal.

Then did another retrieval with pgs, 6 5day embryos, only 1 normal. So for us because we do get a decent amount of 'top grade' 5 day embryos if helps us pick what to transfer. If we only got 1 or 2 embryos then I think you might as well transfer as it does cost a lot.

LillyLeaf Fri 27-Dec-19 22:27:21

Just to add that I absolutely understand that transferring a pgs normal embryo does not guarantee a bfp or a successful pregnancy but knowing that at least I wasn't transferring an abnormal embryo helped me. I could have transferred 8 very abnormal embryos (if I hadn't tested them) as they were all complex abnormalities, some would not have implanted and some might have and then miscarried.

Mrbay Thu 02-Jan-20 17:49:42

Hey @Lavienestjamaisjuste we were thinking about testing on our next cycle however, the test has been downgraded by the HF&EA as not being overly useful so we will just see how the next FET goes and if not successful have an ERA test done prior to our next cycle.

Good luck!

Dia12 Wed 05-Feb-20 23:52:47

Hi everyone, I realise I'm a little late to this co conversation but was wondering if those who have had PGS done could explain what I should expect in terms of results.

I've just done my third ICSI and ended up with 6 good grade blasts and somehow was convinced into having PGS done. It was hasty decision and I was ill informed and now somewhat regret my choice after reading about the complexity and controversy around PSG.
I'm 40, previous ICSI ended with biochemical pregnancy and then I had two spontaneous biochemicals in the last 3 years of TTC. We have MFI issues.

How do the results distinguish between complete aneuploid and mosaic embryos? What does it mean when there are complex abnormalities?

itwasalovelydreamwhileitlasted Thu 06-Feb-20 05:57:53

It depends on who has done the testing as to how much information you get on your results - I also asked for a copy of the report so I could do my own research

My clinic used Cooper Genomics - they will report whether an embryo is normal, abnormal, complex abnormal or high or low mosaic

A complex abnormal is one where 2 or more chromosomes are impacted. In the U.K. you are only allowed to transfer the mosaics and most clinics will only advise transferring the low level ones - there is a hierarchy of chromosomes on Coopers website where it talks about which ones have the best chance depending on which chromosomes are affected and which ones not to transfer as they can be born with chromosomal defects

I'd also recommend joining some of the groups on Facebook - PGS testing is done much more routinely in the USA and those members tend to be loads more knowledgeable x

Dia12 Thu 06-Feb-20 07:47:10

Thank you for replying @itwasalovelydreamwhileitlasted, it's really useful information - information I wish i had before we decided to go ahead with PGS.
I do blame my clinic, who have been excellent otherwise, perhaps it's because they were so good that I casually went along with the suggestion of PGS without realising I knew very little about the consequences and interpretations of it's results.

Have you started a new cycle again?
It gives me hope to think that not every cycle is the same.

itwasalovelydreamwhileitlasted Thu 06-Feb-20 07:54:35

@dia12

I've got another egg collection tomorrow actually - the second of a 3 cycle package of natural modified IVF - we have changed protocol to focus on quality not quantity and we won't be PGS testing. We would have been prepared to transfer an abnormal anyway (assuming no downs etc) so there was no point in testing this time

When do you get your results?

I think over a certain age clinics push PGS much harder x

Dia12 Thu 06-Feb-20 08:08:20

Oh that's wonderful - good luck with EC, fingers crossed for you.
It's always reassuring when you have a solid plan in place, especially a more personalised one.

I turned 40 a couple of months ago so I'd like to try at least another ICSI cycle.
Our blasts were biopsied on 29th jan and was told results would be 15-20 days after if no delays at the labs. I have had this cycle in Greece so no idea which lab they are using but expect their standards and methods to be comparable to uk labs.
It's been a nervous wait so far.

stealthbanana Thu 06-Feb-20 08:41:10

Hi OP - a few issues in your post.

First, sorry for all the miscarriages & the TFMR, it’s so awful flowers. Hope you are holding up ok.

Re PGS - I think you need to go back to your clinic and understand the rationale. It sounds like they don’t have much confidence in your embryos but it’s not clear why. Also, if you are only getting 2 freezeable blasts PGS is absolutely not worth it from a cosy perspective, you’d be doing it to save your sanity in avoiding another failed transfer (which is a perfectly valid reason).

With 3 miscarriages prior to your TFMR have you had any investigations as to your uterine receptiveness etc? If you’ve had a least one miscarriage you know happened despite a xhromosomally “normal” baby I’d be at least wanting to look at that.

Also, how old are you? It’s possible your clinic is anticipating a longer round and if you are older may want you to bank some extra embryos. That should of course be your decision to make.

Finally, I would think very carefully about proceeding with a HFEA red rated clinic. What are the concerns? The embryology makes such a difference to success rates, given how important this stuff is I’d be taking my time and looking at other options with a poor performing clinic.

Best of luck x

Lavienestjamaisjuste Thu 06-Feb-20 17:11:44

Thanks for taking the time to comment @stealthbanana, and others who also have, sorry, don't think I was in a very good place when I wrote my previous post.

I completely agree that I should try to get to the bottom of our embryo quality issues, we actually had 8 blasts out of the cycle, but only 3 good ones (1 transferred, 2 frozen). It's hard to know whether the issue is with the eggs or the sperm, or both, as there are problems on both sides. We are 'only' 32, and I have quite a high AMH, so from that point of view, PGS testing does seem a bit unnecessary, other than to avoid another miscarriage due to a chromosome issue. Which I would obviously like to do.

Thank you also for your comments about uterine receptivity, I was previously concerned about this, but as this embryo implanted (baby would have gone to term) I now feel a little less concerned about this (perhaps wrongly!) and have been reassured by the fetal medicine department that the problem was with the embryo, and not with me if you see what I mean. But it is definitely worth investigating later on, in some ways we were 'lucky' as we got pregnant from our first embryo transfer, but if I went on to miscarry PGS normal embryos then I would look into this further- thank you though for your thoughts, sometimes it's so hard to know where to start with what could be wrong...

We are starting another round in March, and depending on DH's DNA fragmentation result, we may proceed with surgical sperm retrieval, in the hope that this may be the reason for the poor quality blastocysts...

Will be having a meeting with consultant soon and all of your comments will be very helpful- thank you. Still undecided about PGS but I will try to get a more detailed answer from our consultant before making the decision. In the mean time will just keep plodding on.. who knew it could be this hard?! Thanks all

Dia12 Thu 20-Feb-20 19:42:03

I thought I'd update you guys on here of my PGS results. From 6 top grade day 5 blasts:

-1 turned out to be "normal",
-1 was mosaic trisomy for x/y chromosomes - 1 embryo was aneuploid with monosomy of chromosome 17.
- remaining 3 embryos were aneuploid with 2 different chromosomal abnormalities.

The report suggest that the mosaic chromosome may be suitable for transfer with some guidance.

I'm not sure how meaningful these results can be when such a small number of cells are sampled from the part of the embryo that is destined to be the placenta. There many studies which suggest that it may not be truly representative of the cells that develop into the foetus.

Its exactly what I was dreading. I'm not sure if I should go ahead with another ICSI cycle and this time just avoid PGS altogether - and to do this now before I get any older.

Other option may be to use donor eggs. But not sure how I gauge if it's my eggs that are the problem or the sperm? Or just bad luck?

itwasalovelydreamwhileitlasted Fri 21-Feb-20 07:52:34

@dia12
Congratulations on getting 1 normal!
A monosomy 17 mosaic is a good candidate to transfer as a back up as the embryo will wither self correct or won't implant or will be an early miscarriage.

You're 40 at aren't you? My clinic says at 40 70% of eggs are expected to be abnormal which rises to 90% by age 43 so I'd say your results are pretty normal - id transfer the normal without doing any more rounds - you've likely got a good 70-80% chance of success with that one

Dia12 Fri 21-Feb-20 09:52:12

Thank you @itwasalovelydreamwhileitlasted for being so positive. I was just devastated with the results yesterday, trying to be a bit more objective about it now.

Well remembered, I turned 40 just recently!

The embryo with monosomy ch17 is aneuploid. That's exactly what the report says so I figured that meant that all the cells biopsied were had monosomy of ch17. They did not recommend its transfer. So the question is fully aneuploid worth keeping? I'd like to - perhaps I'm unrealistic but I've read enough to understand these results have uncertain meaning and I can't discount the ability of embryos to self correct.

There is one embryo that shows mosaicism - in the sex chromosomes. This one they have had marked as perhaps suitable for transfer. So I'll definitely be keeping that one.

I really wish I hadn't bothered with PGS at all now. What I've gained from it isn't conclusive and meaningful and definitely hasn't been worth the emotional distress at all.

I really would like to do another round to bank some embryos for the future, in the event that the PGS normal doesn't result in pregnancy, at least I can have something else to work with.
Also, sounds even ridiculous writing this but, if were lucky enough to have a child from the PGS normal, I'd really want to give it a sibling but by then I'm sure I'd be closer to 42.

Honestly this whole infertility thing is just wiping the floor with me.

itwasalovelydreamwhileitlasted Fri 21-Feb-20 10:29:49

I've kept my complex abnormal in storage in the event that U.K. policies change and it might be eligible for transfer one day

If you want siblings then yes I'd do more rounds first before you get more deterioration in quality but I wouldn't bother with PGS we did it for one round to try and get answers for multiple miscarriages and I guess we did in that we only got abnormal and mosaic. That being said we are just going to risk doing transfers with untested embryos

stealthbanana Sun 23-Feb-20 07:50:03

@Lavienestjamaisjuste congrats on your euploid embie!

With respect, and very gently, is there a reason you find the PGS to be so inconclusive? Your results are in line with the level of abnormalities you’d expect with your age. If I were you I’d be celebrating that you have avoided the heartache of 4 (possibly 5) unsuccessful transfers or miscarriages. Your situation (finding the successful one in amongst a number of embryos) is exactly what PGS is for.

Lavienestjamaisjuste Sun 23-Feb-20 09:13:40

Hi @stealthbanana thank you, but your reply not meant for me x
We are waiting to do PGS after egg collection in March, have decided to go ahead with it as think it will be useful for our personal situation

Woodcottage1 Sun 23-Feb-20 09:54:43

Hello, I’m 40 years old and had an egg collection in December, 5 mature eggs, 3 blastocysts 5 days, 2 blastocysts 6 days, PGS tested and just one normal. This normal embryo was implanted on Thursday, fingers crossed it works. I can test a week today x

stealthbanana Sun 23-Feb-20 10:33:40

Sorry @Lavienestjamaisjuste I meant @Dia12!

Dia12 Sun 23-Feb-20 11:27:55

Thanks @stealthbanana - I agree with what you have said and it's the same premise the clinic used to recommend this.
But, from all that I've read around this has convinced me that there isn't enough evidence that the euploid/mosaic embryos are truly abnormal and incapable of producing normal babies.
I guess, personally I'd rather take the risk it represents of transferring as I've found it very difficult to discard embryos that aren't complex aneuploid.

Congrats @Woodcottage1 on your transfer 🤗 🤞🏼hope it's a sticky one for you. It's reassuring to hear that my result is normal for my age. Are you TTC your first?

Woodcottage1 Sun 23-Feb-20 11:38:02

Hello Dia12, this is my second cycle. First one was two 6 days blastocysts which had been tested that didn’t implant. I think it’s seen as lucky to get one normal at this age, and one is all we need. Not having any cramps or so today and feeling really well, which is worrying in itself but who knows how we should be feeling for implantation, the internet is full of all sorts. I’ll try and not worry. When are you having your normal transplanted?

Woodcottage1 Sun 23-Feb-20 11:40:11

Hello Dia12, I also am sad about discarding mosaic embryos. If my normal doesn’t work, I possibly might not pgs test next time.

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