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

[Ginandtonic31]

@Hoppy1985 not too long! How many weeks will that be?

Yes this Friday. It just feels so far away 😫

[Hoppy1985]

@Ginandtonic31 I know it's horrible waiting isn't it? Have you organised to do stuff in the evenings after work to distract yourself?

I'm 5 weeks today so it'll be between 8 and 9 weeks. I'm just so on edge every day and I know I will be until at least that first scan.

[Hoppy1985]

@Ginandtonic31 how're you feeling my love? Only one more sleep 🤞🏼 have everything crossed for you.

I've not had a good week. I'd been spotting brown since about last Thursday (so day after testing) and Tuesday afternoon I started having the odd bit of pink/red in with it every now and then so am panicking.

Got referral to EPU which in itself was hard work, EPU said they don't as practice scan before 6 weeks and in only just gone 5 but said they would do a blood test and if it was high enough that they'd likely see something on the scan they'd then scan me. Came back at 7680 HCG (?who knows) and she said that means they'll give the scan a try so have to go at midday tomorrow. Hoping the best but fearing the worst.😔

[Ginandtonic31]

Oh @Hoppy1985 I'm sorry to hear that. I've got my fingers crossed for tomorrow. Please let me know how it goes.

I've got the bloods tomorrow but did a test tonight. I'm freaking out.

[Hoppy1985]

@Ginandtonic31 waaaa that's so exciting! Congratulations 🙌🏼

Thanks. Hope is fading for me I think, I feel like I just know but thanks and I'll let you know.

[Ginandtonic31]

How was your scan @Hoppy1985?

[Hoppy1985]

@Ginandtonic31 it was ok. They said everything looks how they'd expect and dated me at 5 weeks 4 days (which is exactly what I was based on what the ACU at guys told me) so feel more reassured though am still spotting.

They suggested I contact the ACU to see if I should UP the amount of progesterone I'm taking so I emailed them explaining and asking them to call me. Surprise surprise they didn't-living up to their usual standards of communication 🙄

[Ginandtonic31]

@Hoppy1985 oh I'm really pleased it went ok! What a relief. What are you taking drugs wise?

[Hoppy1985]

@Ginandtonic31 I'm taking progynova (two in the morn, two in the evening) and cyclogest (one in the morning, one in the evening).

Assume your blood test went ok and all confirmed!?

[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.

[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]

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

[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!

[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.

[Ginandtonic31]

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

[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.

[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. 🤞🏼

[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!

[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]

@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]

@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]

@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 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]

@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