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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.

First Consultation for IVF with PGT - what do you wish you asked?

12 replies

Moosey898 · 14/11/2025 14:20

Hi everyone - We've just had our funding approved for IVF with PGT-SR on the NHS. Our first appointment is at the start of December with the consultant. For anyone who has been through the process, what do you wish you had asked or wish you knew before starting your first cycle? I'm aware of the process and also know the protocol will be tailored, but despite a long and difficult fertility journey so far this particular part is all new to me. Any tips most welcome!

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SarahAndQuack · 14/11/2025 19:15

Hello.

I hope this is useful - your title has PGT, and my experience is of PGT-A not PGT-SR, but I thought maybe you meant people to respond about PGT in general (since -SR is less common). If not, please excuse me, stop reading now, and best wishes with your treatment!

I wish I'd been clearer about two sets of things: one, how the test itself worked at this clinic, and two, how the clinic expected to communicate about the test.

With the first one, I wish I'd asked:

How much does this specific clinic and lab do this kind of testing? Do they have lots of experience, or not really? What are their statistics for successful pregnancies following testing, and are those in line with national averages? With PGT-A, I would also have liked to understand how the baby's father's age factored into the aneuploidy rate. My clinic only gave us any indication of how maternal age had an effect, and I later found out that paternal age was (for us) a really important consideration we hadn't been warned about (in fact we'd been brushed off when we asked about it). I know PGT-SR is screening for transloctions (is that right?) but my understanding is that it'll detect aneuploidies too, so I wish I'd known about that. I also would have liked to understand what they expected to see - I remember finding the results hard to understand (this feeds into my second set of questions).

With the second one, I wish I'd asked:

How will you deliver the results? Will you talk to me on my own or can we both be on the call? Will you expect to discuss what the results mean during that call, or will there be an opportunity later? How quickly will I need to make decisions after that initial call?

For me, the big shock was that a few hours after we got results in my first round, we got a series of emails asking us to sign forms to destroy all the embryos from that round - we hadn't had time to ask questions about what the test really meant, or anything like that; we didn't have time to talk to each other, and it felt really hard (this is partly because of timing - we did it just as there were cases in the news about an older version of PGT where people had just found out they'd discarded viable embryos in error, but of course that sort of thing makes you want to stop and take time).

I was aware that there's a risk to thawing and re-freezing embryos, and I was aware that, like any test, PGT can throw up false negatives and false positives, but I know people who were shocked by both of those things and I do think they're worth considering. (I might not have tested a top-grade embryo, another time, but that's just me).

Finally ... I wish I'd talked more to the father (he's not my partner, not that this is medically the point) about how he understood the test. And I wish the clinic had talked more to both of us. I thnk he went away assuming that if we ended up with aneuploid embryos it meant we'd basically proved we wouldn't be able to have a healthy baby, and it's not about that, but I think (forgive me for generalising) that sometimes, men are less likely than women to want to think about the details, and sometimes clinics also cause problems by explaining lots to women and giving men the impression it's all plainer sailing than it is.

Apols for the essay but I hope it is useful! Good luck!

PGTSrsly · 15/11/2025 11:51

Hi,

We’re on our first cycle and need PGT-SR as a result of me having a balanced translocation, egg collection was last week. So not super far into the process but sharing what I’ve found in case helpful.

We had a call with the lab doing the testing (Cooper Genomics) as part of our initial consultations and there’s inconsistencies between what they told us vs the clinic. E.g., the clinic told us there was a bespoke test to be developed for the translocation, the lab said this wasn’t required. The lab said they could turn results round in 48 hours, now that we’ve had embryos biopsied the clinic are saying 4 weeks for results. So, I wish I’d pushed harder on these points to really understand what I’m paying for (we’re self funding, will come onto that) and the timelines.

On timelines, as it will (hopefully) involve a frozen transfer, I now understand there’s a limited number of slots available each month. As we were leaving after egg collection, one of the nurses mentioned to phone once my next period starts but that they can already tell me they won’t be able to do the transfer in that first cycle. So, yet more waiting - it didn’t even cross my mind that there wouldn’t be availability at each individual stage to be able to ask about this.

Now we’ve had egg collection, I wish I’d understood beforehand what quality of blastocysts the clinic would biopsy to be better prepared for the drop off. We had 14 eggs collected, all mature, 13 fertilised, 9 to blastocyst but only 4 have been biopsied - AA and AB quality. Now, I know we’re really lucky to have 4, but statistically 50% will be affected by the translocation. Then I think the lab also perform PGT-A, so who knows what else will come up. I’ve really struggled with the emotions of the egg collection/ fertilisation rates being so much higher than I expected but the realisation that we’ll be lucky to get 1 potential transferee out of this.

To Sarah’s point above, totally agree that the clinic tell me far more than they tell my husband - largely because he asks no questions to be fair. He took the day 5 call, told me we had 3 embryos biopsied and there were “a few more that might make it”. I debated phoning the clinic for more information afterwards but didn’t want to be that person! Now I realise I should have done that as to me “a few” meant 3-4 and we only got another 1. Again, don’t want to be unappreciative of where we are and totally get if we were in a non PGT cycle 4 embryos would be amazing - but PGT is a different beast.

And lastly, where I am, only one clinic (NHS with a self funding option) does PGT-SR and this covers the whole country. The NHS genetics team in my area that I met with after my last miscarriage told me the NHS wait for IVF with SR would be 18 months to 2 years. So we tried again naturally for a while as I was very against the IVF route before starting it (it’s actually been fine and so much more manageable than I expected) and then went to self funding. We figured in the grand scheme of things we wouldn’t be wasting time and might save ourselves the stress of IVF. Only when we saw the PGT-SR specialist nurse in September did anyone ask why we were self funding, turns out what we were originally told was incorrect and for PGT-SR the only wait time is for the funding to be approved, which she said took a couple of months. I know not relevant to your situation as you have your funding in place, but sharing in case helpful to anyone else who reads.

Best of luck with the process! Happy to share any other parts of our experience if helpful, it’s not often you see a PGT-SR thread.

Moosey898 · 16/11/2025 16:48

@SarahAndQuack thank you so much for the detailed reply - I know timings and overall process is similar for different types of PGT so the information is really helpful and I really appreciate it. I definitely need to ask exactly what they are testing for - if it's just my translocations or if they will also test for euploid/aneuploid. I've had 4 miscarriages, 2 of which were genetically abnormal but not due to my translocations so I'm really hoping they would check for at least the common trisomies.

When you say you were asked to confirm the destruction of embroys, was that for all the abnormal ones? It hasn't even crossed my mind that would need to be considered, but of course it does!

@PGTSrsly thank you for your reply - I've not seen much on PGT-SR so it's really good to hear from someone already in the process. Can I ask where you're based? For me I'm Surrey, and when I had my third loss and was subsequently diagnosed with my translocations (2 different ones because apparently I'm "exotic" - the words of the fetal medicine unit at St George's) I was immediately eligible for 3 rounds of IVF with PGT-SR (of course with a few box tickings of BMI, nationality etc). And once we chose one of the 4 clinics available to us nationally that we were told have NHS funding for PGT-SR we were able to go ahead immediately into the process. Sorry you got crappy information from the genetics team, that must be so incredibly frustrating.

I hadn't even thought about what embryo grade would be PGT tested - what was the lowest grade they wanted to test? You hear successful pregnancies coming from all grades so I'd love to be able to push for as many as possible to be tested. Was the 4 out of 14 purely because of the embryo grading? And are any lower grade embroys currently frozen in case you wanted to test those too if the AA/AB ones are found to not be ok to transfer?

Sorry for all the questions - as you say PGT is a different beast to a regular IVF cycle and I'm keen to try to give us the best chance of success. After 4 missed miscarriages followed by a neonatal death at 22 weeks (which devastated us as she was genetically normal but I got an infection so they had to induce her to save me), we're praying that the next year or 2 will give us a baby, but are very much aware there's zero guarantees x

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SarahAndQuack · 16/11/2025 16:58

I'm so very sorry about your losses. (I had 4, but I don't know why; it was years ago and they didn't test).

With normal PGT-A, they test for all aneuploidies (so any missing or added chromosomes, plus big deletions/duplications and mosaics). The test can't detect small segmental deletions (eg., DiGeorge syndrome), but it would definitely tell you about the trisomies, which (sadly) are mostly fatal.

And yes, they needed us to sign so the embryos could be destroyed - I found it upsetting, because there had just been these cases in the news of people discarding viable embryos, I'd have liked a bit of time to discuss the results and ask questions. At the time I didn't even know how to read the results they sent us - it was all medical jargon so felt very much as if they were asking us to take things on faith. And also, they'd asked us to fill in forms before this saying what should happen, and we'd said if they couldn't be used in our treatment then we'd like them to be used in research - that mattered to me as it felt they would be doing something useful. I know it doesn't really matter, but it was something I'd used to help myself cope with the whole thing, and I was a bit jarred by them just deciding on our behalf that this wouldn't happen.

FWIW my clinic said that if an embryo was not good enough to freeze it could not be PGT tested, simple as that - they would freeze anything from 3CC upwards, but I think some clinics won't freeze 3s or CC grades.

PGTSrsly · 16/11/2025 17:59

We’re in Scotland, as far as I understand all cases like ours are dealt with in Glasgow.

They didn’t mention the grades of those that weren’t biopsied, or what had happened to them actually but I assume they’ve been discarded/ used for training. When I spoke to the embryologist, she explained that they weren’t expected to survive having cells removed or being frozen.

Similar to Sarah, we signed a bunch of consent forms ahead of time to explain what we wanted to happen with the eggs and embryos, so you just have to go with the judgment of the treatment team.

Very sorry to hear everything you’ve been through.

SarahAndQuack · 16/11/2025 18:03

Just to say - we didn't sign the consent forms ahead of time; we were told we had to sign consent forms afterwards.

Not that it matters.

Moosey898 · 16/11/2025 18:12

PGTSrsly · 16/11/2025 17:59

We’re in Scotland, as far as I understand all cases like ours are dealt with in Glasgow.

They didn’t mention the grades of those that weren’t biopsied, or what had happened to them actually but I assume they’ve been discarded/ used for training. When I spoke to the embryologist, she explained that they weren’t expected to survive having cells removed or being frozen.

Similar to Sarah, we signed a bunch of consent forms ahead of time to explain what we wanted to happen with the eggs and embryos, so you just have to go with the judgment of the treatment team.

Very sorry to hear everything you’ve been through.

Ah that makes sense - Scotland and England NHS manage things differently with almost everything it seems like (not just Fertility!).

I'll have to remember to ask the nurse and embryologist about which they choose to test and why as well.

Thank you for all the information - I really hope the number of embryos you get exceeds the odds. And it's good to hear that you've found the IVF process so far ok. After losing our daughter I was on blood thinners for 6 weeks and those injections burn, so I'm not worried about the physical side I guess, more so the emotional. Trying not to have expectations x

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PGTSrsly · 25/11/2025 13:16

@SarahAndQuack Hi again, wondered if I could ask about your results and what was sent to you please. We’ve had a phone call
to say none of the embryos biopsied are viable, and only when I asked was told 2 were impacted by my genetic issue and the other 2 have something else wrong.

Did you get any written results/ information and if so did this come from your clinic or the lab that did the testing? I can’t get an appointment to speak to anyone before January and want to learn more about the 2 that have other issues but don’t know who/ what to ask.

SarahAndQuack · 25/11/2025 18:29

PGTSrsly · 25/11/2025 13:16

@SarahAndQuack Hi again, wondered if I could ask about your results and what was sent to you please. We’ve had a phone call
to say none of the embryos biopsied are viable, and only when I asked was told 2 were impacted by my genetic issue and the other 2 have something else wrong.

Did you get any written results/ information and if so did this come from your clinic or the lab that did the testing? I can’t get an appointment to speak to anyone before January and want to learn more about the 2 that have other issues but don’t know who/ what to ask.

I'm so very sorry. You must feel absolutely knocked for six.

Yes, I got a written report a couple of days later. It was from the embryologist at the clinic, but I think written by the lab. It was very brief and very medical-jargon-heavy; it took me time to understand it. With mine, three had either one or two complete aneuploidies (extra or, in my case, missing whole chromosomes). This is really common, especially as you get older, but even at 20, you would expect some embryos to be aneuploid as it is sadly just a feature of human reproduction. The fourth of mine was a bit more complicated, but mostly because the baby's biological father was 55 and the sorts of stuff going on has to do with paternal age; this probably isn't relevant to you.

There wasn't any pattern to mine that could suggest an underlying issue.

Definitely ask them who to ask. They ought to be able to tell you and to talk it through. Frankly, I am still angry with my clinic who just didn't bother - please don't be like me, and pester harder!

Again, so very sorry this has happened to you. It feels horrible. It was bad luck, and I do hope next time round (if you're doing a next round) is the lucky one.

PGTSrsly · 25/11/2025 19:36

SarahAndQuack · 25/11/2025 18:29

I'm so very sorry. You must feel absolutely knocked for six.

Yes, I got a written report a couple of days later. It was from the embryologist at the clinic, but I think written by the lab. It was very brief and very medical-jargon-heavy; it took me time to understand it. With mine, three had either one or two complete aneuploidies (extra or, in my case, missing whole chromosomes). This is really common, especially as you get older, but even at 20, you would expect some embryos to be aneuploid as it is sadly just a feature of human reproduction. The fourth of mine was a bit more complicated, but mostly because the baby's biological father was 55 and the sorts of stuff going on has to do with paternal age; this probably isn't relevant to you.

There wasn't any pattern to mine that could suggest an underlying issue.

Definitely ask them who to ask. They ought to be able to tell you and to talk it through. Frankly, I am still angry with my clinic who just didn't bother - please don't be like me, and pester harder!

Again, so very sorry this has happened to you. It feels horrible. It was bad luck, and I do hope next time round (if you're doing a next round) is the lucky one.

Thank you - I am pretty shocked. I was disappointed to get 4 embryos after a much higher number of eggs as I knew there was a 50:50 chance of my translocation impacting each one. However, I did think we might manage to get 1 euploid out of 4.

That’s good to know there could be a written report out there, I’ll get back in touch with the clinic to request this.

I am really annoyed about the lack of availability of appointments, that next appointment is going to be key for deciding what to do next, is it worth trying again etc. I’ll be phoning daily for a cancellation. Part of the reason I wasn’t so keen on IVF was feeling like it’s extracting money from desperate people - and I feel even more like that now. May as well have thrown the money down the drain!

Thanks again for your response, very much appreciated.

SarahAndQuack · 25/11/2025 20:33

You're very welcome. I only wish I knew any way to make it feel easier. I'm afraid I really agree with you on IVF. I am very uncomfortable with the industry.

But ... it is just luck. It absolutely could work next time.

Do take some time to be kind to yourself. It's such a kick in the teeth.

Moosey898 · 25/11/2025 22:56

@PGTSrsly I'm so sorry 😔 I wish there was something I could say to make it better but it's just such a shit situation.

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