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

[MiniPlod]

@grumpycat2019 I have NF1 and am doing PGD to try and avoid passing it on to my children. I was a random gene mutation so no one else in my family bar my twin has it. Luckily we are quite mild. I totally understand how worrying it must be for you regarding your son. Don’t ever blame yourself, it’s not your fault you have a genetic condition! Lots of people with NF1 live perfectly healthy lives.

The process for my husband and I to get to start the PGD was long and I’ve only just started injections. I’m on 450 of Gonal F. It’s been a really long road so far and there is still a way to go but I just keep reminding myself why I am doing this. It’s very overwhelming but don’t let that put you off.

I wish you so much luck in the PGD Process. Xx

Is anyone else on such a high dose of Gonal f from the start? I already feel like a whale!

[Bridj99]

Hello. Guys are trying to get one treatment of PGD before im 40(my local fertility did not tell me about it sooner). Im just wondering If anyone has has any luck of a similar age - the more I read the more im swaying towards normal IVF. Any comments would be grateful x

[wendy2017]

I had done a successful PGS abroad three years ago. We returned back for FET, but unfortunately we didn't make it . We were informed, though, for the bad quality of our eggs. Me and my husband are thinking of trying once again.

[ElphiasDoge]

Sorry, hadn’t quite finished there! We had a DS born with CF earlier this year. Neither of us knew we were carriers. We’re not ready to try again quite yet but have asked for a referral to genetics already in case we do want to as understand waits can be quite long. I think we do want to but quite a few mixed feelings. Anyway we’d rather pull out than decide we’re ready and want it and wait ages.

[ElphiasDoge]

Hi Rebecca,

I’ve just found this thread too. I posted on conception the other day

[Rebecca2326]

Hi All,
Wondering if I could join in?
I am 26 and my partner has Marfans, so a 50% chance of passing onto our child.
We have been referred to the Birmingham women’s hospital for PGD and currently waiting to hear back for first appointment there (we have been referred by a generics counsellor who gave us this option)
Has anyone had any experience with the Birmingham clinic at all please ? Reading all the threads makes me a little anxious about it all!

Thank you

[Ginandtonic31]

@Hoppy1985 just wondered how you were getting on and how your appointment went?

[ThePurpleFairy]

@Parkandride only just saw your message, have you started now? We went to our appointment on Wednesday, had baseline scan and paid for AMH blood test. I’ve got another list of tests I need to get done at my GP but need to wait for period for one of them so got a couple of weeks yet before I can do that. Apparently we go back in 8-12 weeks but I’m not sure what happens after that!

[Parkandride]

Gin - were you writing a diary on fertilityfriends? Your story sounds familiar

I'm also pgd, about 3 years in and finally due to start next month, drugs arriving on Friday.

Purple I'm at leeds but had huge delays with licenses and funding, and actually started somewhere else but moved house so that all slows stuff down, hopefully you'll be much quicker. The genetics bit hasn't seemed too bad, they've got all mine and my family stuff from when I was tested for the condition, so just need blood from DH a month ago. I think it depends on how common a condition it is and what testing you've had as to how quick it is to build the probe.

[ThePurpleFairy]

@Ginandtonic31 ah thank you, it’s just so frustrating I really thought getting to the stage where we had appointments with fertility that things would actually start moving quicker now

[Ginandtonic31]

@ThePurpleFairy the time it takes is different for each satellite clinic so I can't really help I'm afraid. I know it's quicker to go direct with Leeds than Sheffield but don't know with Leeds. In terms of the DNA makeup they will still need to make a test for the embryos. It will depend what protocol they put you on. They will either do that before egg collection or after if you have embryos. They say the building of that takes 3-6 months. Just as an idea, when we eventually knew where the gene was and referred for PGD we signed our forms in May 2017 to go ahead. It was May 2018 before my first round, I then waited a few months after that for the probe to be built and found out in September we had nothing to transfer. My second round was February 2019 and transfer was June 2019.

[ThePurpleFairy]

@Ginandtonic31aww thank you, it’s not so much questions I have about Leeds specifically, it’s just more what else will need to be done after our first appointment and how long I might expect to wait from first actual fertility appointment to egg collection (I know how long is a piece of string), but I have heard that the longest thing is the DNA work up and I’m really hoping that won’t take too long as they did a DNA test on me to see if I have the gene years ago so I’m really hoping that they already know how to test for it, though I’m probably being incredibly naive!

[Ginandtonic31]

@ThePurpleFairy the thread is open to anyone! I don't really know how Leeds work as I was/am with Sheffield but will try and answer as many questions as possible if you have any!

[ThePurpleFairy]

@Ginandtonic31 thank you for the welcome - I just want to say I’m so sorry I really didn’t want to seem insensitive, I had scanned through some of the thread and then posted my message before reading everything thoroughly. I didn’t know that @Hoppy1985 was having such a stressful time and now yourself as well

[Ginandtonic31]

@Hoppy1985 how are you doing? Still better every day I hope?

I also started bleeding yesterday so had an emergency scan. Everything seemed ok and there was a heartbeat so just got to try and hold on for next week's scan.

Welcome @ThePurpleFairy

[ThePurpleFairy]

Hey, wondering if it’s ok for me to jump in on this conversation? I’m 28 and I’m on the PGD waiting list to be at Leeds as a satellite clinic of Guys in London. I have genetic mutation which I’m trying to avoid passing on. We had an appointment with genetics back in Feb when we signed the forms to confirm we want to do it and we have our first appointment with Leeds on 14th August. I don’t really know what to expect, there are three appointments, one for my husband, one for both of us and one for me which looks to be for a baseline scan maybe. I’m hoping at this appointment that they’ll be able to give me some answers as I’ve no idea what else needs doing or how long I should expect to wait before starting to prepare for egg collection etc. Would be really nice to be able to join in conversation with others who are going through the same thing!

[Hoppy1985]

@ST252 welcome! I'm so sorry to hear about your pretty gutting first round. On my second round they upped my drugs significantly which my body didn't like. None of my embryos even made it to the freezer for testing so I know how gutting it is to go through it all for nothing.

I will keep everything crossed for you that round 2 brings you lots of high quality gene free embryos. 🤞🏼

[Hoppy1985]

Hey @Ginandtonic31 how're you getting on? feeling good I hope!

Yeah to be honest I'm not sure what we'll do next. We only have one left in the freezer off our final round so quite literally one chance left and atm I'm really struggling to find any glimpse of positivity 🤷🏼‍♀️ though I am feeling a little better daily so I know I will get there eventually.

We've been given an appointment with the consultant early August. I've read they don't treat miscarriage as "recurrent" until the third time so a bit worried they'll make no effort to investigate why I'm MC before we have our final try.

[Ginandtonic31]

Hi @ST252 I'm also under sheffield. It does seem to take forever! But I've found sheffield great. Good luck.

[Ginandtonic31]

@Hoppy1985 oh I'm so so sorry. And also sorry for not seeing this sooner. How are you coping? I completely understand you might need time away from here. The worry never ever goes.

[ST252]

It's been great to read this feed this evening and feel normal about some of the things I am feeling. Both my husband and I have normal fertility but having PGD IVF to avoid our baby carrying a mutated gene from my husband which could develop into hypertrophic cardiomyopathy. We have been seen in Sheffield as a satellite clinic for Guys. Our first round of treatment was very successful and we got 2 embryos frozen but unfortunately both were affected so we have a second egg collection planned for early September. I found the injection process straight forward with no side effects but struggled with the outcome and am feeling frustrated at how long I have to wait for round 2 when everyone seems to be falling pregnant easily around me! Lovely to talk to ladies in the same position so I know I'm not going mad!

[Hoppy1985]

@Ginandtonic31 yeah definitely, I passed a sac 😔 so it's over.

[Ginandtonic31]

Oh @Hoppy1985 I'm so sorry! Is it for definite? I know someone who passed clots and it was clots around the baby. I know what you mean, I don't think I want to do it again.

[Hoppy1985]

@Ginandtonic31 I miscarried today 😔 started bleeding red and bad cramping this afternoon and happened this evening. Don't know if I can even face giving it another go.

[Ginandtonic31]

@Hoppy1985 that's the same drugs as me although all my progynova in one go.

Yeah my blood needed to be 75 on Friday and it was 205. I know you can't really tell unless tested again and it doubles, but I did the test guys gave me today and it was positive so got to email them that too. My scan is booked for 22nd July.