PGD IVF

[mrsawhite]

So we find ourselves at the start of this journey. Does anyone know the current wait times in Scotland for this? Online results are v out of date. Namely Edinburgh! Thanks

I'm afraid I don't know this, but I did do IVF with PGD on the NHS in England. I'm not sure if it works the same in Scotland, but we had to wait for 3 months (this was after we'd had the required fertility tests, consultations and out PGD genetic work up was completed) to start our PGD treatment in the new financial year, as the funding gets fully allocated very early into each financial year. From being referred to starting our IVF cycle, we had to wait 8 months.

Good luck!

Thanks for the reply. How long ago was this? Haven't had appointment with genetic counseller yet so it's a long road ahead I think!

I've provided our timeline below, including relevant dates, which should give you an idea of what to expect.

July/August 2020 - referred for PGD by NHS genetic councellor.
August 2020 - initial fertility testing at our clinic.
September 2020 - consultation with a genetic councellor at our IVF clinic (funded via the NHS).
October 2020 - consultation with a gynecologist at our clinic and sent cheek swabs to the lab to start work on building our PGD probe/test.
December 2020 - our clinic confirmed the PGD probe/test had been built, but that we couldn't start treatment until the 2021/22 financial year (in March/April 2021) as they'd allocated all the NHS funding for 2020/21.

I think it depends on when you get referred. Early into the financial year and you may still be able to get a place that year, but I guess it depends on how in demand they are. The more people trying to access treatment, the more quickly they'll allocate funding.

I hope things move as quickly as possible for you.

That's a good timeline. Consultant seemed to think there would be a 2 year wait here. Just not sure what to do. Whether to keep trying. Or wait. Guess depends what the genetics counselling says

I think it really depends where you go for your treatment. We were given the choice of having PGD at a hospital, with very long waiting times, or a private clinic, where there was no waiting list other than when they've allocated all their funding for the year. It's such a difficult decision whether to try or not whilst waiting. At our first consultation with our clinic they told us that if we conceived whilst undergoing NHS funded treatment with them that we'd have to repay the costs of any treatment we'd had with them (which was eye wateringly expensive). We'd also already lost a baby due to the genetic condition I carry, so we were too scared to try naturally at that point anyway. However, I now wish we'd looked at other options as our first IVF PGD cycle unfortunately ended in a chemical pregnancy and we were then told we'd have to wait another 6 month to start again as they'd allocated all the funding for that year. We're now looking to do PGD abroad privately, as due to my age (I'm 36) we didn't feel we could wait any longer and didn't want to risk being in the same position as we were in earlier this year.

So sorry to hear about your losses. We lost a baby last year at 16 weeks due to my genetic issue. Which didn't know about at the time. I also worry about if the ivf doesn't work! It's not clear from online if you are allowed to try whilst on the waiting list either. Like you v worried about trying. But also in 2 years time, my age will not be on my side. All so difficult isn't it x

I'm so sorry to hear of your loss too! It's a horrible position to be in being scared to try naturally due to a genetic condition and not knowing whether to just sit tight and wait for IVF with PGD on the NHS (as there are no guarantees). As part of our treatment we also had PGT-A to test our embryos for the right number of chromosomes. Embryos with the correct number of chromosomes are signjfincantly more likely to lead to a pregnancy and live birth, so I had high hopes that it would stick (only 1 out of the 5 blastocysts we got were transferable after testing, so we had nothing else to transfer from the first IVF cycle).

Do you know when you'll be able to speak to a genetic councellor? That'll no doubt be really helpful in terms of understanding likely success rates for your age group with IVF with PGD. X

Hi, I don't have any advice but we are debating going down the route of PGD in Scotland too so thought I'd say hi!

We tried naturally this cycle but it doesn't look like we have been successful so we agreed if I'm not pregnant we will get the ball rolling with PGD.. I was hoping to fall naturally but since ovulation I've been half hoping it doesn't happen as I don't know if I can handle the testing and results of a natural pregnancy. We went through one recently but it ended in misscarriage before we could have our tests done.

Have you got any children or is this a first try?

X

Hi waffle!

No children. Had a Mmc 18 months ago at 12 weeks. Then last year had to tfmr at 16 weeks because of Pataus. Hence we had genetic testing done and I have an inversion on 13. So imagine that's what caused the mmc. I really don't know what to do. I suppose we need advise from genetics team about how likely it's going to happen. I think very likely each time. Where shouts are you? X

Where abouts 😁

@mrsawhite

Hi waffle!

No children. Had a Mmc 18 months ago at 12 weeks. Then last year had to tfmr at 16 weeks because of Pataus. Hence we had genetic testing done and I have an inversion on 13. So imagine that's what caused the mmc. I really don't know what to do. I suppose we need advise from genetics team about how likely it's going to happen. I think very likely each time. Where shouts are you? X

I'm so sorry to hear about your losses. That must have been very difficult. I was booked to have CVS done with my last pregnancy but m/c before the appointment, we have a 50/50 chance of passing on my partners terminal genetic condition. I have other children from previous relationship.

Have you got an appointment to discuss it yet? I wonder what the odds are. Obviously its a different situation to regular IVF. I think we read ours would be likely 30% success rate but we would like to get some more information from his genetics doctor.

I'm in the Highlands, where are you?

We are Aberdeen. But will have to go to Edinburgh I believe. Oh that sounds hard. A terminal one?

No idea re appointments. I have a phone appt on Monday with a family genetics nurse. But not sure what or how much they can tell me!

Heyyy @mrsawhite

Just thought to jump on this post as I am currently waiting to start PGD. I’ll give you my back ground on the process so far.

So I opted for a private clinic with NHS funding as the wait time was much shorter than Guy’s Hospital (London).

So I had my genetic testing done in 2017 (at Guy’s hospital)

I contacted my geneticist at Guy’s early August to say I wanted to start PGD and I told them where I wanted my referral to go to and they done it just before the August bank holiday (2021).

I was contacted 16th September by the clinic to book my first appointment, and DH and I received our 1st set of paper work electronically and was given access to the online portal.

Nov 3rd 2021: 1st appointment (PGD consultation) - they take a detailed medical history and talk you through the process.

17th Nov 2021: DH and I had fertility and blood tests (I could have done this sooner but I was on contraception and had to wait as I needed to have 2 periods since coming off contraception).

30 Nov 2021: 2nd appointment - Fertility consultation (talk about results and discuss the medication I will be on).

So where do I stand now?

So my parents are having their bloods taken for their genetic testing tomorrow (to see if either of them carry the same gene as me or if it started off with me (this should take approx. 8weeks)).
If one of them are a carrier it will help as it means we can do carrier matching rather than me having to go De Novo (it is an easier process).

Once my parents have received their lab results back I just need to send it to my clinic so that they know what method they will use for me, and then they need to do the work up (using saliva samples from DH and I and my mum or dad (whichever has the gene - if one of them are carriers).
I believe while they do the work up DH and I will be sent the 2nd batch of forms for signing and we can do our nurses consultation where we are taught how to do the injections.

Then finally we are all good to start - so the clinic are anticipating me to start treatment July, but said if the work up is done sooner then I can start sooner.

I’m not going to comment on the medication as every clinic is very different, but I would say if you can, attend an online open evening with the PGD clinic(s) that you are interested in, it helps you to get a feel for the clinic before committing to anything.

I hope this gives you a bit of an insight to the process.

Let me know if you have any questions or anything 🙂.

@mrsawhite how are you getting on?