Moving from NHS to private IVF, what happens to leftover embryos

[Michelle202]

Hi
I'm starting nhs ICSI this month and have been told its unlikely to be successful first time, due to dh very very low sperm count and my age (nearly 40). Also due to age they think they'll only get in one fresh round before my birthday when the funding gets cut.
So odds are we'll have to move to private.
We really would rather have PGS, for personal reasons and the fact it increases the success rate. So would do this if private.
So my question is, if I had frozen embryos left after nhs, do we have to use them privately or can we start again privately and do the PGS? (I'm aware this needs to be done before freezing).
Thanks

Wouldn't you be allowed to pay for extras even if the NHS doesn't cover them as part of the treatment cycle? Definitely my friend had an NHS funded cycle, and she then chose to pay for some add-ons that the clinic offered (e.g. embryo glue) that weren't covered, and that was fine. So could you pay for the PGS on any freezable embryos you get out of the NHS cycle and then later pay privately to use them?

I wish that was the case. I asked the doctor and she said the hospital 'doesn't believe in PGS', even in their private wing. I think forcing their personal ethical choices on patients is rather unfair. They also said if I wanted private options I need to have the whole cycle privately somewhere else.
Was also told I couldn't have a new NHS fresh cycle whilst I have any frozen embryos stored, not sure if that's standard NHS policy?
That's why I was worried about moving to private. Scared they will hold me to ransom over any remaining frozen embryos.
I really don't want to be made to use them privately, knowing that PGS would increase success and reduce chances of miscarriage etc. At my age, only proceeding with embryos that are more likely to succeed seems so obvious. When you don't have any funds and need to take out a loan, you want the best chance of success.

Michelle if you start again privately you can do whatever you want.
Not allowing another fresh NHS round while you have frozen embryos sounds pretty standard. If you can I would get cracking on your NHS round and see how it goes, just view it as a chance to see how your body responds to the hormones and you might get lucky and get pregnant. If you do have embryos left over I imagine you could pay privately to have them stored.
PGS is a great tool but IF you only get a few embryos you might choose to have them transferred regardless.

Rainy your friend is quite lucky I think to have been allowed to pay for private add ons in an NHS cycle. I was not allowed to pay for anything extra, in either of the hospitals where I could have had my NHS treatment. Which seems so daft but the whole funding issue is such a lottery anyway.

Good luck OP.

That's interesting JenNeBaguette I didn't know that. Where we live it's a private clinic that is also attached to a research centre and accepts NHS patients from the local hospital, so maybe that's the difference.

Equally, where we live it's almost impossible to get an NHS cycle, so probably the clinic has very few NHS patients and so may be more flexible about them - you have to be under 35 by the time treatment starts (after going through all the investigations, potentially including several rounds of the blood test ones, and then waiting to find out if you've been accepted) but they won't even start that process until you've had 2 years of unsuccessfully ttc. So unless you know when you're quite young that there's a reason to think you're likely to have fertility problems, lots of people miss the boat as by the time they realise there's a problem and manage to get it logged with their doctor they won't get through the system in time.

Just to let you know that it is possible to do PGS on already frozen embryos. We just did this - they thaw, test and refreeze. There is a risk that the embryos won’t survive the thaw & refreeze, but it is possible. Hope that helps x

Fleanne, thanks for the info. That's interesting and good to know.
JenNeBaguette, thanks for the info too.
Rainy, it really is a lottery and hugely unfair.
I've just had a transabdominal cerclage put in, so can start ICSI hormones in a few weeks. I can only hope for the best. With nhs I just have to hope chance is smiling on me and I have one embryo that is without abnormalities and that's the one they transfer!
And if not, I'll try private to limit of what we can afford. Can only try!
Thanks.

I wouldn't worry too much about the PGS on leftover embryos at this stage. Only 1 in 3 couples have any leftover embryos to store at all and of these lucky couples it's often only 1-2 freezable embryos.

PGS costs thousands of pounds and if there are only a couple left you'll probably want to transfer them regardless. In my opinion PGS only really makes financial sense if you have quite a few (5+) embryos and want to pick the best. If you get 2-3 you will likely transfer them all anyways.

I'd just do the NHS cycle and as a Pp said see it as a chance to see how your body responds. It might be that this isn't even an issue for you as you may not have any leftover or get pregnant the first time. You might be one of the lucky ones with several embryos that make it to blast, but if that's the case then go for PGS if you need a second cycle privately funded.

Being really brutally honest, I wouldn't proceed with a pregnancy if there were chromosomal abnormalities and would rather spend the money on PGS now to avoid the heartbreak of abortion later. I'd rather have no embryos left than have to go through that later.

As a pp said, it is possible to do PGS on frozen embryos, as long as you are prepared to take the risk that you might loose some.
Again as a pp said, its actually quite rare for there to be loads of leftover embryos good enough to freeze, especially on a first cycle and around 40. I had my one free NHS cycle when 39, and despite good amh levels, got only 2 blastocysts which didnt take. However i took all my results to the private clinic. They were able to tweak treatments based on my responses in the first cycle and i got 11 blasts the 2nd time round. So maybe consider the NHS cycle as a test cycle - you could get invaluable information to help your private one.
Finally, i know PGS feels like the solution, i was all for paying extra for it, but on discussion with both NHS and private clinic, they emphasised that i would still have to do a NIPT test if i was lucky enough to get pregnant to rule out abnormality. Its not 100% depending on the stage of embryo (3 or 5 day blast) and the random chance of which cells they take to test. I finally decided against it.
It’s scary beginning ivf, there are all these choises and it feels essential to make the right decisions but eventually it just depends on how your body responds to the drugs & it’s mostly out of our control.
Wish you all the best. X