Prepping for IVF (+PGD) - killing time/need to feel proactive suggestions

[ivf2019]

Hi all.

I've been lurking about for a while but our referral has just gone through for IVF with PGD at Guy's, so I figured now was as good a time as any to de-lurk.
TTC for 18 months (not long in the grand scheme of these boards) but made decision not to request fertility clinic referrals as I have a balanced translocation, and they get funny about letting you have the PGD if they think you're doing it because of any other fertility issues beyond your genetic situation. So hopeful that the preliminary IVF assessments won't throw up anything major. Recently decided that we really didn't want to face the emotional turmoil of conceiving naturally and facing TFMR if the baby was unbalanced if we had an option to avoid it, hence now kick-starting the PGD route.

We're very, very lucky to have the IVF+PGD option available to us, but it's still a difficult thing to wrap your head around needing and I'm struggling a little bit. No guarantees, physically/emotionally intense in ways we can't even understand yet...
Just wanted to ask if anyone has any advice for the next 6-8 months while we wait for appointments and treatment dates etc.? Physical things, egg quality things, keeping yourself sane?
My BMI is 27 so just overweight, so I'm planning to lose some weight before we start, and will be alcohol/caffeine free for 3 months before we start treatment, but I kind of feel like I need to be doing something now to kill the time and make me feel proactive.

Also, why is the reaction always so bloody chipper when you open up about these things?
Any advice on how you handle the
"omg hun aren't you so excited now that they're doing something to help you?!?!?!"


... actually no, I'm not that excited about false menopause and injections and egg collection and the risk of OHSS and waiting for embryo testing and freezing and thawing and what if we don't even have any normal embryos, let alone thinking about transfers and beyond, and I'd much rather have just got knocked up the old fashioned way and not have a 50%+ risk of that baby dying before birth.

Sorry for the long, ranty post. Thanks in advance for any tips and all the best to you all x

[Munchies89]

Hey ivf2019

Our stories are a little similar- I also carry a balanced translocation and my IVF PGD referral is being put in today for Birmingham.

Unfortunately I've suffered 5 miscarriages since May 2017- the 5th I found out this week so still raw.
My BMI is 31 at the moment so need to make sure it's below 30 when our appointment arrives. I've lost 19lbs so far so should be manageable.

I haven't got any friends or family that have been through miscarriages or IVF so hoping to also get advice and support from others on here.

My main worry is that all of my eggs are affected. Do you have this worry too?x

[ivf2019]

Hey Munchies, thanks for replying and so sorry to hear about all your losses. It's so shit and must be so very hard to go through. I hope you can take some time to rest and grieve and get some IRL support too

Yes, that's what I'm scared of too, even though I know statistically speaking that there must be some good ones in there too! Or that even if I do have some unaffected eggs what if by pure chance they only collect affected ones?
I can't stop reading other people's stories, from those who luckily get several balanced embryos on their first cycle to the other end where people have done multiple rounds and never had a balanced embryo or any make it to testing. It just feels like playing a horrible numbers game doesn't it x

[Munchies89]

It definitely feels like that.
I was really shocked when the geneticist mentioned donar eggs to me for if we weren't successful....its so heart breaking to think about but I know I need to think about it and come to a decision for if I need to.
My biggest feel since being a child was not being able to have children and I feel it's coming true.

Did they give you any idea how long you'll be waiting until your first appointment?x

[ivf2019]

I felt the same when ours started talking about donor eggs and adoption. It feels like a very final end to having a baby with your own eggs doesn't it? But both those options work really well for some people so think we'll definitely have to give them both some more thought too.

Guy's have said it's about 8-10 weeks for the first appointment once they receive the referral, and then 4-6 months after that to treatment starting. Is that the same kind of timescale you've been given?

Also, if you don't mind me asking, and please don't feel like you have to say if you do, but are you going to continue trying naturally while you wait for your first cycle? I think we are, but I haven't conceived in almost 18 months so I guess unlikely to do so between now and then and therefore unlikely to have to deal with the pain of losses. x

[Munchies89]

All we've been told is that they've worked extremely hard to get the waiting time down as originally we were told it was a year! Now they're saying we will be seen by end of November. The geneticist told me yesterday that if possible they may try to start treatment from our first appointment but I've never heard that before, especially with PGD so I'm really not sure and don't want to get my hopes up.
When we were told it might be a year we decided to carry on trying as we had fallen pregnant pretty easily everytime however I feel like I've had enough miscarriages now and mentally and physically can't keep doing it.
When did you know you were a carrier? Have you had any tests to see why you're not falling pregnant? Also please don't feel you need to answer any of my questions either.
I'm very interested in doing fostering and adoption, I just wish we could see what's going to happen in the next year or 2 as I feel everything is on hold and it's been constant highs and lows for 18 months now x

[ivf2019]

Sorry for the late reply! It's hard isn't it. We were told up to a year too initially, but apparently it tends to be a year for single-gene disorders where they have to build a probe and more like 6 months for translocations. Small mercy I suppose!

I've known I was a carrier since I was a child as my brother was very sadly stillborn and he had the unbalanced translocation so all the family were tested. How about you? It's strange having known about it for so long as I really appreciate that we could be forewarned and prepare mentally for it, but it's also tough to have hanging over you as I did go through phases of being very anxious about it.

We haven't had any fertility investigations apart from a SA (count and morphology both fine but low-ish motility) as I'd read that they can stop you having the IVF+PGD if it's implied that you're doing it for fertility reasons rather than the genetic implications. With hindsight I wish I'd pushed for the fertility stuff as well because it may well impact on the PGD but now we're in the referrals process there probably isn't much point.

Sorry that you've had such a torrid 18 months. It's awful not falling pregnant and I've been so low about it, but I know I'd be 100% worse if I were falling and losing them so I can't imagine how you've been coping. It must be so tough. Definitely wish we could all see into the future and know how things will pan out - the waiting and hoping is definitely the worst part. Hope you're doing okay xx

[Munchies89]

So sorry for my late reply also- I keep half replying and then losing it if I come off.
Sorry to hear about your brother. My brother also has the unbalanced translocation therefore following his birth my parents and grandparents were tested which showed my mum and nan are carriers.
I decided to get tested about 4 years ago prior to getting married so that it could help prepare us for the future...however the information we were given was that it was a less than 1 in 4 chance of the pregnancies being affected however in the last year I have learnt that it's 50% chance for every pregnancy.
I had a feeling I was a carrier and my husband and I were absolutely fine with the outcome and for if our future children were to be affected however it's not gone the way we had planned.
It's been helpful knowing I'm a carrier as could have the babies tested if I've had missed miscarriages therefore 2 of the 5 have been tested and have been positive for the translocation.

It has been extremely difficult, especially with not having any friends or family ever having a miscarriage. We had a lot of support with the first one but since then the support has been less and less each time. I know it won't be the case but I feel people are bored of hearing about our miscarriages now.
I can't imagine how frustrating it is for you to not fall pregnant yet. It must add to all of the questions in your mind. How is your OH coping with it all and the IVF for the future?

I'm tempted to read and follow 'it starts with the egg book as I've read it's good to follow pre IVF... x

[ivf2019]

Hey @Munchies89 just thought I'd drop in and see how you were doing?

I also ordered 'it starts with the egg' but haven't psyched myself up to read it yet. Have you? I have read 'how to get a life' which is a his/hers IVF guide... it's quite good. I find the man quite annoying but it's nice to go through the whole process step by step, although obviously it doesn't include the PGD.

[Munchies89]

Hey IVF2019!

Ooo I'll give that a go too, shame it doesnt include PGD though.
I haven't psyched myself up to read it yet either.

My first appointment has come through now which is 4th December. I'm glad I've got a date but also feel stressed as still need to lose 10lbs by then....which doesn't sound a lot but I've already lost 18 so struggling to get it off even though it definitely needs to come off.

Also feeling a little down the last few days with all the pregnancy news on the radio and news and one of my close friends had her baby yesterday. So feeling a little emotional but I'll be okay.

How are things with you?x

[Cherries101]

PGD can have a 5-10 percent error rate. You will still have to undergo further testing during your pregnancy to know for sure.

[ivf2019]

Interesting Cherries where did you hear that? From my GC and my own research PGD for most couples will be around 96-99% accurate. It depends on what they're testing for. For X-linked disorders the error rate is higher, but it's lower for single gene disorders and (I think) then lower again for large translocations.

Munchies glad you've got a date set! Although the time pressure for losing weight must be stressful, but you can definitely do it if you've already lost 18 - that's amazing. Do you do anything particular like WW or SW? I've put on a stone that definitely needs to come off before any treatment.

Ah yes the Royal Baby news didn't help. I feel the same really - spent the weekend with a toddler, a 4 month old baby and two pregnant women - it was lovely and I was fine at the time but after I got home I felt horrible and really low. That was Sunday and the Royal Baby was announced on Monday so you can imagine how cheery I was at my desk on Monday morning!
Still no appointment letter but I've chased the clinic again and they've said all our information will be posted out in the next few days, including details on how to book our appointment. Another friend announced her pregnancy a few weeks ago and it just knocked me for six, so I'm just anxious to get going now.

[Munchies89]

Sorry to hear you've felt a bit rubbish too ivf2019.

Has your letter arrived yet?
Yes been doing weight watchers but haven't been able to stick to it since my last pregnancy, just want chocolate everyday.

I still haven't read the book we mentioned. Really want to find a good book on pgd but haven't found anything yet x

[ivf2019]

Thanks Munchies - it actually arrived yesterday funnily enough and by some miracle we've ended up with a first appointment on Monday!
So to say I'm shocked is an understatement, especially since it took them 2 months to get the letter out.
Quite excited but also very apprehensive about what they'll say.

I haven't seen any books on PGD either - maybe after all of this we should write one!

Weight watchers is tough going and can't blame you with the chocolate. I'm the same and I'm a classic comfort eater which doesn't help. I read somewhere that even a 5% reduction in weight improves fertility so that's what I'm focusing on, and chances are you've already done that with your 18lbs.

It's a weird old journey this but I hope you're okay and are being looked after xx

[Cherries101]

My clinic told me this. She said it’s not a HFEA statistic because they don’t recommend it at all, but a cross industry one. She said at best there’s an inaccuracy rate of 5%. It’s because only a small number of conditions can be tested - if a condition is not on a list then accuracy rates vary wildly. It’s also possible that even with an all clear for a genetic condition the child may still have it (or another condition)— within the clinic itself they had three pregnancies terminated over the past year for the a condition that the embryo had gotten a PGD all clear for, but it was within accepted tolerances across the industry.

That’s why my clinic recommended I didn’t get it done— there’s no evidence yet that it works better than embryoscopy except for a very narrow range of conditions. This is why it’s a good idea to talk to your clinic first. There isn’t a lot of industry wide information at all about PGD accuracy or success rates — clinics keep their own and will tell you what seems to work and what doesn’t.

[ivf2019]

Ahhh I see, thanks for explaining Cherries.

I have a balanced translocation so the PGD was recommended by my Genetic Counsellor and at my clinic it's around 96-99% accurate for detecting the unbalanced versions. There is of course the risk of other conditions though that aren't detected because they'll only be looking for embryos that are balanced for my translocation.

Like you say though, if it were a single gene disorder or a rare condition I completely see why the inaccuracy rate would be higher and therefore not always worth it. Were you considering PGD because of an inheritable condition? Please don't feel like you have to answer if you'd rather not x

[Verbena87]

Just seen this and wanted to say we did IVF with PGD at guys for a genetic condition (so needed probes creating) - egg collection was late June and transfer of condition-free frozen embryo was December the same year so only 4 months wait for us, and we were so lucky to get pregnant from that first transfer.

Took my folic acid/vitamin d, ate well, cut caffeine and kicked booze completely but beyond that I didn’t do anything special.

Just wanted to give you a dose of hope. Feel free to ask any questions (is over a year ago now so I may have forgotten the details but am happy to look out notebooks etc). Lots of luck

[Munchies89]

Oh wow ivf2019 I'm so excited for you for Monday. Please let me know how you get on. Mines 5 weeks and counting!

Verbena87 thanks so much for sharing that. Congratulations that everything worked well for you. Please could you tell me a little about the meds and the time plan of things. Does it usually take 6 months between egg collection and transfer? That seems so long to wait.
Its only been 2 months since my last miscarriage and I'm struggling with not having the hope each month of being pregnant as actively not trying now due to having an appointment through. I know it's the best option for us following 5 miscarriages but the hope of having a child just feels so far away. I know it'll be worth it in the end....hopefully x

[Boo2you]

I’d go to the gym means you can just focus in yourself for a bit it helps me (though admittedly I need to go more often). I know I’m not in the same boat exactly but I also had the option of PGD as we had a 50% chance of having a baby affected by Myotonic Dystrophy, long story short if we had baby affected all the Dr’s I spoke to recommend TFMR as the baby if survived would more than likely suffer greatly! While we were waiting for an appointment to get the PGD process started we conceived naturally (I have PCOS too so thought there was no chance) I was in total shock and terrified of the testing! Had CVS at 11 weeks luckily we have a healthy DD. Last October we found we were expecting a baby boy but found out at 12 wks he was affected and had to have TFMR heartbreaking! Had complications and stuff afterwards too. As we have a healthy child we no longer get PGD on the NHS and its £15k per cycle and the success rate is 1 in 3 - we could potentially need £45k to give our DD a sibling! Just want you to know that there are still people with risks as high as ours that have healthy babies naturally and want to wish you best of luck and can totally understand why you chose PGD sorry for the long post xx

[ivf2019]

Hey @Boo2you and @Verbena87 thank you both for sharing your stories!
Boo so pleased you have your little girl but so sorry to hear about the loss of your son. TFMR must be so heartbreaking and is definitely part of the reason why I'm keen on doing the PGD rather than continuing to try naturally, though like you say healthy pregnancies do happen! Me and my brother are both naturally conceived healthy carriers so that helps me remember that it does happen.

Verbena so glad it worked first time for you. I bet your little one is totally cherished.
Interesting to hear more about the timelines too.

@Munchies89 thank you for the luck! The appointment wasn't what I was expecting really (not sure what I was expecting) but I'll share in case it helps you plan for yours!
Appointment was at the Genetics centre, but for some reason I had it in my head that it would be something other than a Genetic Counselling appointment, I guess because we've already done that with our local GC. It was just a GC appointment really but the Counsellor was very nice and we did still learn some new things.
She talked us through the risks of misdiagnosis (1% apparently) and explained that the biggest risk for your first cycle is actually underresponding to treatment and then hardly getting any eggs . They don't really know how you'll respond so your meds dose is a bit of guesswork at first. That worries me a bit as my biggest fear is that they'll get no unaffected embryos, and obviously the chances of that are higher the less eggs you have.

She also said that unfortunately even though it was mega speedy getting this first appointment, we're looking at waiting until Feb/March for our first appointment with the Assisted Conception Unit. That's the one where they'll do an internal ultrasound and get us to sign all the consent forms. I was hoping it might be more like January but hopefully with Christmas etc. in the middle the time will go quite quickly.

I have to get written evidence from my GP of my most recent smear test and that I've had a rubella vaccination as a child, but other than that there's nothing we can really do until then.

After the first ACU appointment it's apparently quite a long wait again before starting any treatment, so potentially we might not start until August. I'm a bit gutted about that but I know how fast this past year has gone so hopefully the next year will be similar and time will fly.

She suggested that I go back on the pill now as you have to as part of treatment anyway while they down-reg you, and she encouraged me not to try to conceive naturally before we start. I'm not too sure what to think as I really don't want to go back on the pill again but I guess that if the "but maybe I'm pregnant this month and maybe everything will be healthy and it'll be okay" voice in my head wasn't there every week before my period then perhaps that wouldn't be a bad thing!

Sorry for the long message. How are you feeling about your first appointment?

[Munchies89]

Thanks so much for sharing @ivf2019. Sorry it wasn't quite what you expected. It's such a shame that it's quite a wait after doing all of the consents etc, I wonder if the wait is due to the amount of people they have on their lists etc or what it is. Do you qualify for 2 rounds as well?
I feel like there's going to be so many highs and lows throughout the ivf experience and that's not even taking into account the hormone medication.
That interesting she said about the pill as when I asked our genetic counsellor she said to stay off it until I have our first appointment and see what they say...however I have read that they do normally ask you to be on it.

I'm very apprehensive about my appointment and feel like I don't want to get excited as I know there will be some bad news e.g. time frame or something else that'll dampen my spirits.
Time feels like it's going so slow for me at the moment and everyone around me is getting pregnant and having babies when my pregnancies were due...constant reminders of what I should have. I also struggle to accept the situation I'm in as my husband and I had accepted that we might have a child that was affected and we were okay with that, however now I'm having to have IVF as I just keep miscarrying. I know I'll look back one day and be grateful for the way it'll turn out but it's been nearly 2 years since we started trying for a family and it just feels like our dream is actually getting further away right now.

Wow you thought your message was long....so sorry for me rambling on.

Ate you getting much support from family and friends?x

[Boo2you]

I know what you mean about everyone getting pregnant around you - my SIL got pregnanct the same time as I did with the little boy she was due the day after me and went on to have a baby girl, whereas I had to lose him at just gone 12 weeks. Since then everyone else I know - school friends, local mummy friends and NCT friends have all had or are having their second babies! I feel like I’m being ungrateful coz my DD was a miracle baby but I really want her to be a big sister as all her friends are now older siblings and she would be such a good big sister! Hope PGD works out ok for you guys the end result will be worth it!! I might have to try and find the money if we manage to get pregnant again and the baby is affected don’t know if could try naturally again after that! My condition is a bit different there are no carriers you either have it or you don’t - it depends which egg I release if it has the affected chromosome 19 or not! Best of luck guys! Xx

[Munchies89]

@boo2you I totally get where you are coming from. I have those thoughts and I haven't even got a child yet, then I feel bad and have the same thoughts about being selfish but I don't think it is at all, you're thinking about your child having a sibling at the end of the day.
It's so sad that it costs so much money to have the happiness of a family.
Best of luck to you too hun xx

[ivf2019]

Good luck to you too Boo! Must be so tricky with your SIL being due at the same time as your little boy. I hope she was sensitive and you had some good support

With you both there, feels like everyone is pregnant right now and my SIL is due next month so Christmas is going to be all about the new baby (rightly so!) and I am excited to meet him/her but also know it'll be such a hard comparison - them with a new baby conceived first month trying and us nearly 2 years in trying and waiting for IVF. In that respect I guess maybe it would be good to get back on the pill and take that side of it away.

It must be so hard Munchies with your due dates. I find timepoints of other peoples pregnancies and births really difficult (with my best friend I thought I'd be pregnant by her baby shower, then by her birth, and now I'm just hoping I might be by the time she has a second as I know they want them fairly close in age) .. but that's without comparing it to losses.

I know I'll look back one day and be grateful for the way it'll turn out but it's been nearly 2 years since we started trying for a family and it just feels like our dream is actually getting further away right now.
You've hit the nail on the head there! We will all get there, it's just a long and horrible journey. I just hate how unfair it is, not that I would wish this on anyone else.

I've been surprised really by how supportive people have been. I told a group of friends at the weekend as we were all together and it kind of came out, and aside from the odd "you just need to be positive and it'll work!" comment (they don't know any better) they were really great. It felt good to tell them.
Both sets of parents know and one of DH's brothers - although I expect more of his family know as his Granny knows and isn't great at keeping things to herself. I don't mind people knowing as long as they aren't going to blindside me with questions out of the blue at Christmas when we're all together.

What about you? Have you got a good support network, especially while your miscarriages are still so raw? I hope you're being well looked after

[Boo2you]

My family and DH’s family were great, my SIL was pretty sensitive though posted her 12 weeks scan picture the same day I got my results and found out I was going to need a termination (which she knew) but she was excited about having her second baby which I could understand. At least with PGD once it happens you’ll be able to be excited about being pregnant I know you’ll have the anxious wait to find out if it works then make sure you make it 12 weeks so the mc risk decreases! Can’t really do that when you try naturally ibsorbdvyhevehoke first few weeks terrified of the CVS results! I’m sure once the treatment gets underway it’ll fly by! Feeling for you both - waiting is horrible!

[Boo2you]

ibsorbdvyhevehoke - this was - I spent the first few weeks .....