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Infertility

Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.

PGS testing

49 replies

Lemongrass1 · 06/07/2020 13:18

Hi, wondering if I could get some info from people who’ve had PGS testing on their embryos. I’m 41 and have 8 frosties from an ICSI cycle when I was 38. I know that statistically at least 50% and probably more will be aneuploid. Will be having a transfer this week so it’s too late for this one but I’d like to get the rest tested if this cycle is unsuccessful. Am transferring one at a time and I don’t think I could physically or mentally face multiple transfers. I don’t plan on any further fresh cycles and am aware I could end up with nothing to transfer if all come back abnormal. For those of you who had PGS testing done what was the outcome? How long did the process take and were they able to test embryos that you previously had frozen? Most of the embryos we have frozen are average/ borderline quality so I’m assuming some will not survive the thaw/ refreeze process.
Thanks in advance 😁

OP posts:
loulamay · 30/09/2020 10:49

Hi - can I join? OH and I are both 40 and had a fresh IVF round in May this year, which ended up with 8 (we were vv lucky) day 5 blasts, of different grading but none below 4AB. First single transfer after the egg retrieval was BFN, second single transfer ended in a chemical preg and third double transfer we had one stick but I miscarried at 6 weeks. I have 12 eggs that were frozen when I was 35, so before I met OH, and we are considering having those fertilised and then PGS testing our 4 existing embryos and any that make it to day 5 from the frozen egg batch. I've also had two natural miscarriages with another partner in my earlier 30s.

I am seeing my Dr this week because I had a D&C following the last miscarriage and I'm hoping that they will have some results from the embryo - if it was abnormal then the miscarriage will be explained, but if it was normal then that tells us that it might be my body that is rejecting them or there are some immune/blood clotting issues going on.

I think I mainly want to do it because I just can't face another miscarriage. But then I'm terrified that none of our embryos will be 'normal' and I don't know what we will do next. And also I'm terrified because we could have the testing done, get normal embryos, and I still miscarry!

Jeez. It's such a journey. Some days I feel fine and others I feel such panic that I am running out of time and options.

Sunshinelove8 · 30/09/2020 11:27

@loulamay I would test the ‘soil’ as well as the seed . That’s what I’m doing . Often it’s chromosome issues with the embryo but especially if your last one was normal I’d test any issues with your body . If you go to the zita west site they have a long list of blood tests to do , to help rule out various bodily issues . You should also have an ultrasound of your womb , you may already have had a more detailed hystereoscopy for ivf anyway?
It’s lucky you froze at 35 ( great idea) and I’m sure you’ll have lots of normal embryos so as long as seed and soil are ok I’m sure you'll get a lovely rainbow xx

loulamay · 30/09/2020 17:31

@Sunshinelove8 definitely. Love your soil and seed analogy. We have ruled out PCOS with me and during my D&C last week my Dr was taking the opportunity to also do a hysteroscopy to check for polyps etc. Have also had an HSG (man that was sore!) and that came back with no issues. We included Clexane on my last cycle in case of any autoimmune issues and I was also on progesterone and estrogen meds, plus L'Arginine, Vit E, Vit B12, regular pre-natals and magnesium. I don''t think I'm going to bother with an ERA because implantation doesn't seem to be the issue, rather getting the frosties to stick around! At my last appointment we also discussed the possibility that I have an 'unfussy uterus' that is allowing genetically abnormal embryos to stick. I believe I may have had more chemical pregnancies than I realise because I have very long cycles but there's no way to actually know for sure.

Seeing my Dr Friday to discuss findings from the D&C so looking forward to hearing what he has to say! Will then talk about next steps with the frozen eggs and the PGS tests.

Where are you at with tests? Also have you read Dr Lesley Regan's book on miscarriage? I thought it was SO informative.

Createyourusername · 07/10/2020 10:07

@LennyFitz sorry for the late reply! We went to a clinic in Greece (zymot was the device, yes). I haven’t heard of it being used in the UK - it may not have made any difference but we were happy the result so far and it was a minimal cost addition so felt it couldn’t hurt!

Sunshinelove8 · 07/10/2020 12:37

@loulamay sorry I missed your post , I haven’t read the post , after mc I was trying to not think about it so avoided too much reading. What were the key points you found? What’s happening with you now ? X

Lindyloolou · 22/10/2020 22:32

@Createyourusername hope you don’t mind me chipping in, but your situation sounds very much like mine. Do you have an update on PGS testing/plan for FET? I’ve had 4 MCs from natural pregnancies in the past year and a half. OH DNA fragmentation is really poor. He had direct sperm retrieval yesterday whilst my eggs were collected. I had 23 eggs retrieved but only 15 were mature enough and 9 have fertilised via ICSI (day 1 today). The fact they’re whittling down so quick makes me feel so uneasy. Praying there are some strong little beans that make it to day 5 (Monday). Because of the 23 they advised we freeze all (was originally going to do 1FT) but they were worried about OHSS. Wondering if that was the wrong move given how many are dropping out.

Createyourusername · 22/10/2020 22:42

Hey @Lindyloolou, no update as yet, still prepping for transfer. 9 is still a pretty good number - lots of people only get 9 eggs (or less) retrieved as a starting point. The waiting is horrible, but there’s every chance you’ll get a good result as the surgical sperm retrieval will have bypassed some of the sources of DNA damage.

Lindyloolou · 22/10/2020 22:49

Thanks @Createyourusername Here’s hoping 🤞 Sorry for the questions, I don’t know anyone who’s in a similar boat so hope you don’t mind but can I ask, are you prepping for a transfer ahead of PGS result or do you have this already?

Createyourusername · 23/10/2020 00:05

@Lindyloolou we already have the PGS results - had 5 normal!

Lindyloolou · 23/10/2020 07:53

@Createyourusername that’s fantastic news! So how long did you have to wait in total between retrieval and FET? 5 is fantastic - fingers crossed for you xx

Createyourusername · 23/10/2020 08:00

Thanks @lindyloolou. Just have to cross fingers that previous miscarriages are due to bad luck/poor genetics and this time it might work! It will be 2.5 months between retrieval and transfer. I think some clinics do it much faster as they can get the results within two weeks and they start the prep drugs for frozen transfer straight away - I had to do wait for the results and then do the whole down-regulation process so two cycles in between.

Lindyloolou · 23/10/2020 08:05

Thanks @Createyourusername I’m a bit sore today so in a way, happy I have a bit of a break. I’d be worried to start medication again and have no quality embryos so I think having a cycle in between is a good approach for me personally. How did you find down reg process?

Createyourusername · 23/10/2020 08:16

I forgot to say also, I wouldn’t worry that doing a freeze-all will affect the chances of success - the ones that didn’t fertilise wouldn’t have done so regardless of freeze vs fresh, and if they’re not suitable to freeze at the blastocyst stage then they probably wouldn’t be the ones picked for a fresh transfer anyway. And if you’ve had lots of miscarriages there’s definitely some benefit to filtering out the abnormal ones through PGS so that you’re reducing the chance of having to go through it again. You might have the kind of physiology where your body is keen to try to nurture genetically compromised embryos (this is one research theory that is unproven, but one I find compelling!). If it turns out to be true, for people like us it could be that this ICSI process is acting as the filter for poor embryos that your uterus isn’t managing to do by itself.

I’ve found that some doctors seem a bit blasé about miscarriages (I’ve been told lots of variations on “you just have to keep trying and the likelihood is that it’ll eventually work“), but I personally wanted to do all I could to reduce the chances of it happening again.

I really hope that it works out for you!

Lindyloolou · 28/10/2020 21:05

Thanks @Createyourusername What a week! So out of the 9 fertilised, we ended up with 5 embryos 5AA 4AA x2 3BB and 3BA - all biopsied and frozen. I’m actually really pleased with that number given so many dropped off at the start... 23 eggs, 15 mature, 9 fertilised. Now awaiting the Genetics results which should be with us within the next 10 days. Started my period early (5 days after retrieval) - guess it’s the hormones but it does mean hopefully an FET can happen before Xmas if all goes well with genetic testing. The never ending waiting game eh..! Hope everyone else is doing well.

Lindyloolou · 28/10/2020 21:19

Also @Createyourusername Might be worth taking 75mg asprin during your next pregnancy - won’t harm and it’s something my dr has suggested I do as you may have some sort of slight blood clotting issue which can cause MCs. I’m also going to be on clexane. I tested positive during my recurrent miscarriage investigations for having the MTHFR gene (the common strain) and also elevated NK cells so I’ll also be taking steroids a couple of weeks before FET and upto 12 weeks (hopefully we get to that point!). Given your results and similar background it might be worth investigating/asking your dr about it.

Hopefully it was a sperm issue for us both previously and everything else is fine 🤞 My dr is basically throwing everything at it now I guess - just in case.

Createyourusername · 28/10/2020 23:27

That’s wonderful news @Lindyloolou! Fingers crossed for you on the testing...

loulamay · 14/11/2020 09:18

Haven't posted on here for ages but we decided to go for the PGS testing and did ICSI on my 14 frozen younger eggs on Wednesday. Out of the 14 eggs, 8 fertilised and I just heard from the clinic about the day 3 status:

"You have 8 embryos that have divided with the following grades:

1x 8cell embryo
3x 6cell embryos
2x 4cell embryos
2x 2cell embryos

On day 3 of development, we expect the embryo to have between 6-8 cells. Therefore, 4 of your embryos are on target and 4 embryos are developing a bit slower.

You will receive your next update on Tuesday regarding the number of embryos biopsied."

Must admit I was hoping for slightly better numbers but if the 4 that are on track stay on track by Tuesday, then we will have 8 embryos in total to send off for PGS - the above and our 4 frosties from the recent ivf cycle. Then I have no idea of the percentage/stats around the chances of those being normal. Also it's hard to say because they are two separate batches of eggs retrieved 4 years apart.

Does anyone have any reliable info on percentage of normal day 5 blasts perhaps? I would imagine it's done by maternal age?

ivfbeenbusy · 15/11/2020 06:11

It does depend on age but honestly it's a total gamble - age 36 at least 50% of mine should have been PGS normal but I didn't get any. But I know women over 40 where only 10% are expected to be normal get better results? It can also completely change cycle to cycle

loulamay · 15/11/2020 06:49

Yikes! Will just have to wait and see then. Think they're doing the biopsy on Tuesday and then not sure how long results will take. This is worse than the 2WW!

ivfbeenbusy · 15/11/2020 09:11

@loulamay

Yes the wait for PGS results was worse than the 5 days post fertilisation to see what blastocysts we had - my results I was told could take up to 5 weeks if they came back in about 3 weeks I think

Make sure you agree with your clinic what their approach is regarding mosaic embryos - it's illegal to transfer abnormal embryos in the U.K. but some clinics will transfer low level mosaics depending on the Chromosome involved?

I was allowed to transfer a low level mosaic -11
It was a BFN but everything else was complex abnormal.

Afterwards I realised what was the point in PGS testing if I was prepared to transfer a less than "perfect" embryo anyway? I didn't test on my next egg collection and am pregnant with twins 🤷‍♀️

Lindyloolou · 15/11/2020 09:24

Really is a matter of rolling the dice and anything can happen - I wouldn’t bother thinking about averages... I’m 35 and having had multiple natural conceptions followed by early MCs, OH poor DNA fragmentation, we did an IVF cycle which involved direct sperm retrieval ( a sample we had tested of this came back perfect on the DnA front so somethings happening to them as they leave!). They took 23 eggs from me, 15 mature enough... ICSI followed 9 fertilised day 3 and then 5 good quality blasts some day 5. PGS came back and sadly only 1 is normal. Was expecting more given our last pregnancy with identical twins which ended in MC came back genetically ok. All abnormalities were different in the 4 blasts so they think it’s purely bad luck and no cycle is the same. Bitter sweet feeling though as at least we have one and saved ourselves 4 future MCs! Looking at natural cycle FET early December. I’d do testing again for sure in future to save greater heartache and time. I’ve been pregnant for 10 months in the last 2 years and no DC. Fingers crossed this one works. Hope everyone is ok and gets there - worst feeling in the world wanting something so bad, life being on hold and in the meantime, everyone around you seems to be popping them out!

Bonnie558 · 24/02/2021 15:27

@createyourusername i've just been searching if I could find anyone that had had zymot as we're doing our 4th round of ICSI at zita west and they started doing it a few months ago. My husband has really high DNA fragmentation and our consultant says they've had better resuluts with it than anything else for male issues. I think IVF London offer it too. At zita west they're not charging for it currently too which is good

Createyourusername · 24/02/2021 15:55

Hi Bonnie
It’s probably worth trying as although research is currently mixed, anecdotally it seems to have some positive feedback. Has your partner seen an independent urologist? Just asking because historically IVF clinics tend to specialise in female fertility. We saw Jonathan Ramsay who is one of the leading specialists on DNA fragmentation, which helped to reduce the fragmentation level by more than 10%. It doesn’t sound masses, but when you look at the distribution of sperm with low vs high fragmentation within the sample, we went from one in 10 with low DNA damage to one in three, which can a big difference to IVF results.
Wishing you lots of luck with your cycle!

Bonnie558 · 24/02/2021 16:49

Hi @Createyourusername thank you. yes he’s seen a urologist, one Zita west recommended. He followed every bit of advice given, supplements, diet, had already stopped caffeine and alcohol, but didn’t have much anyway and had the test repeated and it actually came back a bit worse! It’s over 50% damaged. The urologist has no idea why, said it could have just been the sample that day. He had an undescended testicular that wasn’t fixed properly until he was 16. Our first round of ICSI actually worked, just pure luck I think, this is our last go for a sibling. I wanted to go down the sperm retrieval route but not many drs seem keen on it and our consultant seems to think zymot will get us a better result. It’s hard as you just have to trust they’re trying their best to help you!

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