Anyone got any experience of PGS genetic testing?

[EL8888]

We had a video conferencing meeting with our IVF clinic today. They have suggested genetic testing for the 3 embryos we have in the freezer. Has anyone done this? Any insights or experiences would be appreciated.

To give a bit of background we are 40 and 38, been trying to conceive for 2 years. 4 cycles of Clomid and 1 cycle of IVF. During which 18 eggs were collected, ICSI done and we ended up up with x5 5 day blasts. 2 transferred at the end of last year in 1 transfer and they failed. Clinics theory for failure is it’s a sperm issue, as the majority of embryos dropped off from day 3. They also haven’t ruled out some genetic issues with my eggs. Lining and hormones are not a problem, l respond well to the drugs

From my own research l have came to the conclusion this could be a way to forward. So l wasn’t surprised by their suggestion. It’s expensive but it’s cheaper physically and emotionally in many ways. Rather than going through transfers which most likely won’t work.

I’m feeling quite over-whelmed by it all. Logically they’re probably our last chance to conceive. There’s little point in another round of IVF, to potentially produce more genetically flawed embryos that can’t go the distance. The next avenue then would be sperm and egg donations which we probably aren’t up for.

Hi @EL888
At 40 we stared IVF while living abroad and had 2 rounds of egg retrieval. I've got low AMH so our doctor advised we retrieve until we had at least 5 embryo's banked. Unfortunately we found out we we were being relocated just as we were going into the second retrieval. We ended up with 3 embryo's to test at day 5.

Given our age we decided it was best to test, better to know sooner rather than later if there was going to be any heartache. The whole process is a complete roller-coaster.
Our results were all abnormal, 2 showing that they would not have even implanted, and the last one had a mutation that would implant, but wouldn't make it to full term.

It is expensive but I feel that it was totally worth it.

We had given ourselves a limit of 3 or 4 round of retrieval, depending on numbers, but that got cut short at 2 rounds. We are now looking to start the process up again with one more round of own egg retrieval, with PGS, and a FET if we get one normal embryo, and then on to the donor egg route if that doesn't work. However trying to get an appointment anywhere at the moment is pretty tough!

Hello @EL8888 I don’t have any experience but I’ve opted to use PGS in our first round of IVF. Unfortunately I had a TFMR this year and though our DNA passed all the tests for No genetic issues, due to my age (37) and my partners (36) we want PGS testing done for our embryos.

It’s a choice we chose as there is a slight risk of damage to the embryos and miscarriage but it’s ever so slight. After going through a TFMR I wouldn’t want to go through it again so I prefer the testing. Yes it’s expensive but I would say worth the cost of a potential, impending heartache. I guess we’re being prudent but it’s just a decision we chose with our heart and mind. Saying that we are going through a round of tamoxifen before ivf just to ensure one last try before ivf and do carry the risk of a genetic issue there as obviously we cannot test of the pregnancy is successful until 10 weeks. I would say go for it particularly if there suspected issues with DNA to save yourselves from any issues during the pregnancy.

Good luck x

I did PGS testing on 2 blastocysts last year - I wanted to do it on more but we only got 2 out of 12 follicles. 1 came back complex abnormal - legally not allowed to transfer and a low level mosaic which we did transfer but it was a BFN

At age 40 if you are only thinking of having 1 baby then I would definitely PGS (I was shocked to get no normal embryos at age 36 but that obviously explains our 5 miscarriages)

I wouldn't do it on less than 5 as the odds are at age 40 you'll only get one normal for transfer but you have to also accept the risk you could get nothing to transfer due to the block on transferring abnormals in the U.K.

@ivfgottostaypositive we don’t want to do any more IVF, so it would only ever be these 3 embryos. Like l said l would prefer to do no transfers, rather than ones that’s genetically won’t work anyway

@ChicaXS thanks. They can’t be 100% sure but they are fairly sure his sperm has genetic issues and l might have issues with my eggs due to my age

Our clinic advised us against PGS as they didn't feel it was worth the money. I think it's now been downgraded to 'unproven' by the HFEA. What really put me off though was that there doesn't seem to be a common standard set by the HFEA.

After I'd had two miscarriages, the clinic said we could defrost the embryos we had for PGS, but every time you thaw them you may lose some and it can damage the embryos - they basically still weren't keen on it. We decided against it anyway (and spent the money on lots of expensive tests and drugs instead).

I've done it and it same back not suitable to transfer. Saves the heartache of a miscarriage but it's still shit.

I had PGT-A (PGS) on my previous cycle, though my situation is a bit different because we were doing PGT-M to avoid passing on a genetic disease and PGT-A was offered as a free extra (same biopsied cells can be analysed for both).

We had 10 blastocysts biopsied out of 17 eggs collected, and unfortunately nothing to transfer because there was only 1 euploid embryo and it was affected by the genetic disease. As hard as it was hearing the results, I’m very glad we had the test done because it saved us from having to go through a series of transfers with close to no chance of success that would have delayed us starting a new cycle. I’ve just come back from egg collection for our new IVF cycle, and we’ll be having PGT-A again.

I understand HFEA recommendation when looking at a single IVF cycle success rate, as the test won’t ‘fix’ the embryos’ chromosome count and any euploid embryos would be transferred anyway without the test even if it’s after a few failed FETs or miscarriages. Also accuracy is not 100% (it's 98% in our lab), and there is a very small risk of damage to the embryos during biopsy. However, I wish HFEA mentioned the advantages too: it can avoid a lot of suffering, and allows you to start a new cycle much quicker, which could potentially increase your pregnancy chances overall if you have the funds to try several IVF cycles.

From our 1st round we got 5 5day blasts, first 2 transferred were miscarriages so we tested the remaining 3, all were abnormal. We did a second round, again we got 5 5day blasts, all were pgs tested, this time we got 1 normal. I'm so glad we did it otherwise I might have transferred more abnormal embryos and had more miscarriages. Yes it is expensive but worth it. Good luck.

Sorry l have missed the last few posts apologies -now going to catch up

1 of the 3 embryos didn’t even survive defrost. Really not looking great

@ginandtonicformeplease it’s annoying there is no common standard

@EL8888 I am so sorry to hear :(

At what point is it defrosted? I thought they freeze the embryos then the defrost for PGS testing then freeze again for transfer? Is that not the case?

@ChicaXS thanks

They were frozen from our cycle last year, then were defrosted last week in preparation to get some cells for the PGS testing. Embryo 3 didn’t survive the defrost so logically wouldn’t have been survived anyway, whether it was for testing or transfer

@LillyLeaf it’s harsh but yes kinder in the long run l feel. False hope is never helpful in my experience

@HopefullyDreaming thanks for sharing your experiences. Good luck with it all

@twinkledag sorry to hear this. It feels like ours are probably going to go the same way.