PGD treatment

[Pharaohhoundbek]

Hello

I’m 29 and have just started PGD treatment. Both myself and my partner are fertile so we are hoping this works in our favour with the treatment. He has a genetic mutation which creates tumours so we are going down this road to prevent our children having the same gene. I wondered if anyone here has had this treatment? 3rd day in and I’m very nauseous! Hot sweats at night and general poorly feeling. Has anyone else experienced this?

Would love to hear from anyone who has had successful births with PGD too :-)

Thanks in advance,
Bek x

[Scottishgirl85]

No personal experience of pgd (although I have recently been through ivf) but my friend does for similar reason to you (both fertile but needed to avoid a genetic disorder). She now has two lovely children. Good luck x

[Pharaohhoundbek]

This is so positive thank you! Do you know if she fell pregnant first try with the PGD?

Good luck to you- I’m on Gonal F hormone and I start taking cetrotide this Saturday for 2 weeks. Hope this nausea goes! X

[Scottishgirl85]

For her little boy it worked on the second cycle, then 18 months later for her little girl it worked on the first. Her egg numbers were low so she had little to work with and none to freeze each time, which has nothing to do with pgd part of the process. The pgd won't affect your chances, if anything it increases them as you're putting back a healthy embryo as far as science can tell. Wishing you all the best x

[Hoppy85]

Hi P.

I'm currently undergoing PGD treatment at Guys & St Thomas. I had to take Gonal F then Cetrotide also though apart from a tender stomach near the end I didn't really have any notable side effects. How are you feeling now?

I've had my egg collection and they retrieved 9 but unfortunately only 2 made it to blast stage we are waiting to find out if either is free of my dodgy gene (I have a form of Muscular Dystrophy).

It would be nice to have someone going through the same process to talk to!

[Pharaohhoundbek]

Hey Hoppy!

I am going through Guys & St Thomas too how funny.
My egg collection is the third week of January, I'm nervous about it- did it hurt?

Bless you- how long do you have to wait until they can put embryo back in (if they don't have gene obviously).

I still find it confusing. Yes it would be nice, I have no idea what I'm doing x

[Hoppy85]

Hey!

Yeah I find they're really casual about it as if though you've done it before so they forget you haven't?

The frozen embryo transfer (FET) - assuming there is one to transfer can happen pretty soon after I think, although at current all I've been told is I'll need to take the contraceptive pill on the first day of my period and let them know! I don't know if they'll give me more drugs or try and fit in with my natural cycle or what as they haven't told me? I'm the same as you- no idea what's going on!

The actual collection you're out for and so you don't notice anything. I came round pretty quick after, they get you to have a cuppa and some biscuits to make sure you're ok after the anaesthesia. The lady across from me had nausea but I didn't seem to be at all... just tender for a couple of days after but I was back at work the next day

[Pharaohhoundbek]

Super casual.. I’ve emailed/called and think I’m annoying them but I need more info lol.

It’s so confusing isn’t it with the pill!

I’ve never been put to sleep before gosh this is a whole new world for me. Can we swap numbers on here? Be great to have someone to talk to through this xx

[Pharaohhoundbek]

Thanks so much Scottishgirl85! This success is so promising. Xx

[Hoppy85]

Yeah I'm not sure how without posting it in public forum? Have you got an email address then I can email you?

Super confusing! Basically why I've ended up here... looking for help. Also everyone here talks in abbreviations? I've had to decode

[Hoppy85]

P if you give me your email I'll send you my number?

[Hoppy1985]

Does anyone know how long it is usually between them scanning to check your lining and the actual transfer (assuming all ok)?

[Bumbers]

I appreciate that this is a really old thread, but wondering if any of the ladies on here (or anyone else who has had / is having / will have PGD) is around and has any insights into PGD that they can offer?

We have just been for a pre-chat prior to the first official appointment for PGD at Guys and I have found it difficult. We have already been through a twin pregnancy where both were free from our genetic issue (translocation) but then I lost them at 23 weeks due when i went into extreme pre term labour. We have then had a second pregnancy and missed miscarriage that was caused by our translocation. Now trying to decide if we should go for PGD. From what they said, the earliest they could possibly be implanting is 9 months after we sent back our forms, and even then there is obviously not a great chance of success. It feels so far away.

Anyone else been through something similar and what made you go for it with the PGD? Is that your experience with the timelines? How was the process itself?

[Hoppy1985]

Hey Bumbers.

So sorry to hear all you've been through, it sounds like you've had a pretty rough time of it so I understand why you might not feel particularly positive about the prospect of PGD.

A bit of background about my own situation- I have a rare form of muscular dystrophy which is x-chromosome linked with a 50/50 chance of passing it on with varying severity- but if it were a boy it would be severe (I.e. could be on a ventilator from birth type situation). We have been told there are no indications we have any fertility issues.

I'm currently undergoing PGD at Guys but have had two unsuccessful rounds 😔. R1 9 eggs collected, only 2 fertilised, 2 made it to blastocyst and were frozen for testing and 1 was gene free and was implanted. Got a positive result but miscarried the day before my first scan at 8 weeks. R2 only 7 eggs collected,not one fertilised and in the brief phone call we had from the hospital they said my eggs were abnormal and mentioned something about changing the drugs, so we're not sure if I have an issue they've missed or if my body is interacting badly with the drugs?! That was only a few weeks ago and We have a consultation at the start of next month to go through things but have been told there is no space for us to try again until next year.

Re timelines- I took my first round of stims and had egg collection second half of Aug 17. I found out the results of the testing mid Nov. We didn't have the transfer until March as we had holidays book as we'd been told the testing could take up to 6 months but they did have a slot the first half of Jan so about 4 months for us.

I am feeling quite negative about the whole process at the moment but i have had a particularly bad result. I've met two other lovely ladies who had far more success in terms of how many "tries" they'll get as they both have 3-4 healthy embryos from their first cycle so I'd definitely encourage you to think positive about it, particularly as you already know getting pregnant isn't really an issue and presumably the PGD would get around the genetic issue?

Feel free to ask any other questions but I'd say go for it! Is it the length of time it might take that worries you?x

[Smeller89]

Hi Bumbers
I am doing PGD for a translocation. I lost 3 natural pregnancies, at various stages, and ultimately decided that I could not go through that again - that is what drove us to PGD. I got pregnant naturally quite easily and with our translocation there is a high risk of an affected pregnancy going to term so that made the decision easier.

I've done one round so far and it was much easier physically than I'd expected. Definitely much easier (both physically and mentally) than dealing with my previous pregnancies (TFMR) and miscarriages.

It's such difficult and personal decision though, and it really depends what is best for you and what you can cope with. If you haven't already, you should join the Facebook group, there is so much support on there from people at all stages of this.

Having said that it's a totally personal decision, if I were you, I'd get on the PGD waiting list anyway and get the process started! It takes ages and you can carry on thinking about what you want to do while you're waiting. I even thought about trying to get pregnant naturally while we were on the waiting list and spoke to the nurses about it - they totally understood and said to go for it if we wanted. It was only once treatment actually started that we were told not to. In the end though, I realised that we were doing the PGD for a reason and decided just to go down that route.

Good luck with your decision making, it's such a crappy position to be in!

[Bumbers]

@Hoppy1985 thank you so much for replying. I really appreciate it. It sounds like you have been having a difficult time as well. I really hope the next round will be successful.

It is the time factor vs chance of success. It seems so far away and half of me thinks we could realistically get pregnant next month and there is a 50% chance all would be fine (genetically - obviously all the other standard miscarriage risks and we are high risk for another pre term) and in 9/10 months we could have a baby. Or we wait for a good 9 months only to have this fail. I think she said the odds were something like 1/3 across up to 3 cycles? With it being 50:50 if you get a viable embryo to implant?

How has the process been physically etc?

Feels like there are no good options!

[Bumbers]

@smeller89 thank you so much for replying. I am so sorry to hear about your losses. My husband had a sister with the translocation but she died in early infancy and so it is possible for the babies to go to term, but is quite unlikely I think- my in laws had 5 other early miscarriages (and 3 wonderfully healthy children). our mmc stopped at 8 weeks, so think overall more likely than not that I would miascarry, but not certain.

We were told that we could have 1 more meeting to go through the process in detail and after that we would have to sign a form to say if we were going for it. If we sign that then we were told we would have to repay all costs etc if we got pregnant naturally, so we really would have to stop and then just go with the timelines of the process, which are longer than I had appreciated.

Good to hear physically not been too bad.

I really hope you have a successful next round!! Thank you again.

[Boo2you]

Hoppy 85 - you don’t have Myotonic Dystrophy do you? i haven’t had PGD (I got pregnant natural before we got our aooointnent for the PGD clinic) but a friend of mine had 2 healthy children! Good luck

[Hoppy1985]

Hey @Boo2you no I have emery Dreifuss muscular dystrophy though I imagine the issues re genetics are similar!

[MummyBearBoo]

@Hoppy1985 - have you had another round of PGD? Any news yet - I guess ours are fairly similar but mine just depends on the egg released not the sperm - if I release an egg with my dad's chromosome 19 it's bad news if the egg has my mums chromosome 19 were all good!

[Hoppy1985]

Hey @MummyBearBoo yes we have our final egg collection scheduled for the end of March, all or nothing now I guess. We're starting a heath regime from Jan 1st - no booze, healthy diet, exercise (well as much as I can!) etc.
2018 has been a pretty crappy year for us all round so we're going into 2019 trying to have a positive attitude. How about you? Where are you at? X

[MummyBearBoo]

Well can't really afford PGD and I'm no longer entitled to it on NHS so we're TTC naturally for 3rd time -first time was ok second time wasn't and we have 50/50 chance of it being ok so I'm hoping if we do get pregnant this one will be ok! The TFMR last time was very traumatic! I really hope I don't have to go thru that again but I really want a second baby - having a baby affecting isn't really an option!

[Hoppy1985]

We have discussed "what next" if our final go at PGD is unsuccessful but having had a natural MC at 8 weeks off my first cycle which was just horrendous I'm not sure how I would cope with TFMR (though I fully understand and support anyone who has gone through such a difficult decision and experience). I feel because I have the condition I would be passing on I'd be in a pretty informed place to make such a decision, just not sure how I would cope.

I really want to be a Mum though so I guess I will have to cross that bridge if and when I come to it.

I really hope that it works out for you 🤞🏼

[MummyBearBoo]

For me, especially with having our first baby being unaffected, the TFMR very hard - I feel completely justified in my decision coz our little boy would have been very poorly if he survived and time is a healer - as the CVS is done early and everything is done as quickly as possible (he was 12 weeks - the results took 24 hours, the termination procedure was booked for the next day then you go back two days later to complete it) - I had every side effect possible from the tablets ended up in hospital overnight and then had numerous complications- a year on I think I can move past it tho i wouldn't say I'm over it- we are now TTC # 2 again - hope this cycle works for you xxx

[ivf2019]

Can I join you please ladies? Just returned our paperwork to Guy's so looking at 3 months before the first ACU appointment and then hopefully starting first cycle late summer/early Autumn.

I have a translocation hence the PGD, but have been trying naturally for almost 2 years now and not conceived at all in that time, so a bit worried that there might be something else going on that might impact on our IVF chances. I'm sure they'll pick anything up but it's a bit worrying.

So sorry to hear of the horrible journeys that have led you all to this point. It's been so difficult not getting pregnant but I know I'd be a million times worse if I'd been having losses or having to TFMR.

I hope your final egg collection goes well @Hoppy1985 and good luck with TTC again @MummyBearBoo xx