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Infertility

Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.

IVF #1: All embryos tested abnormal - now what?

27 replies

Presently83 · 03/11/2022 08:12

Hi everyone,

Bit of a sad one here so just looking for words of hope, I guess.

I've had three miscarriages in the past year, so we decided to do IVF in order to test embryo quality. I'm 39 and recent tests show my AMH has dropped to 6.5 and my AFC is only 5.

I cycled with ARGC and actually got 14 eggs, 8 mature and fertilised, 3 blastocysts biopsied for PGT A testing. So far so OK.

I got the call last night that they all have abnormalities. All different trisomies, so I don't think it's a genetic issue, just shit old eggs. But I'm completely devastated. This year has broken me, and now this. My partner has a son so we had no NHS funding, and this round cost us around £15k. I don't know if there is even any point of continuing now, as clearly all my eggs are revolting.

I'm utterly broken by this and just feel like giving up entirely. I hate myself. I'm disgusted by my body and its inability to work properly. I feel sick when I look in the mirror. I have cut myself off from most of my friends and my career is crumbling because of this horrible year, and I can't see a way of clawing myself out of this hole.

OP posts:
Kelb79 · 03/11/2022 11:38

@Presently83 I could have written this message myself ❤️❤️ Sending you soooo much love xxxx

im 43, TTC for 3 1/2 years (no previous children)
had an MMC from natural conception a year ago.
fertility investigations got held up because of Covid so we missed the boat on funding.
have just finished 3 rounds of collection with a clinic in Spain.
ovulated early on the first so got nothing.
did the second straight away on the clinics advice but one ovary hadn’t recovered from the collection attempt so was late to respond.
5 eggs, 2 immature, 1 fertilised and made it to a day 6 blast.
we did another round to try to bank more for testing, got 5 eggs again, 3 fertilised, 2 made it to blast.
doctor was really hopeful of getting something but all came back, like you, with different abnormalities.
we found out last week and ive been in a total mess since!
I felt at first like the first 2 rounds didn’t really count so we hadn’t given it a proper shot (despite spending so much and going through so much 😵‍💫) but the more I looked at it, that second round was as good as we could expect and still didn’t yield anything.
our doctor is pushing the donor egg route. It’s hit us like a tonne of bricks and we’ve had a really hard time over the last 10 days.
im like you - I’ve really struggled with hate for my body. I put on weight after the pregnancy and MC which got worse from the IVF treatment. That’s really got to me and i just feel let down by my body.
I’ve pushed my OH away so much I’m amazed he’s still here tbh!
but we are starting to get through it.
its been a lot to come to terms with thinking about a donor egg but we’ve come to the point that it’s that or not have a baby.
ive read a lot about epigenetics and how much influence you still have over the baby through pregnancy and I know that as soon as I got a BFP I would love it just as much as I would have with my own egg. An egg is purely a bunch of cells that you take and grow 🤷🏼‍♀️
the finance has freaked me out completely.
it is much more expensive for donor egg obviously but when I added up the cost of the treatment, plus the meds, plus the PGT-A (which I’d have to do after getting such bad results!) it’s the same 🤷🏼‍♀️
im starting to actually feel hopeful again with it all.
have you considered donor egg? Or is that a definite no for you?

Doglover11 · 03/11/2022 12:15

@Presently83
There was a poster on here who had a round of abnormal embryos and who then did another round, didn’t test and ended up having healthy twins. I myself had a round ended up with x3 blasts and with testing one abnormal two inconclusive. I did another round and got one blast, transferred it without testing and had a healthy daughter.

to be honest I’m not a fan of PGS testing. One of my inconclusive embryos showed an extra chromosome 22 which would cause severe learning difficulties and health issues if the baby was born. I retested it recently and it came back normal which makes no sense if some cells were abnormal before. And my other inconclusive embryo has come back with mosaic trisomy 1. So if I take the ‘bad’ from each round of testing I’d have 1 abnormal, 1 mosaic trisomy 1 and 1 mosaic trisomy 22. So nothing any good either. They only sample such a small amount of cells and apparently they can self correct anyway.

in your case I’d do another round - maybe with a good but less expensive clinic if money is an issue and I’d just transfer without testing.

regarding feeling that your body has failed embryos are made of 50% of you and your husband just because he has a son doesn’t mean that the abnormalities are due to you

Doglover11 · 03/11/2022 12:24

Some reading for you

www.ncbi.nlm.nih.gov/pmc/articles/PMC6707985/

The transfers of “abnormal” embryos by PGT-A offered robust pregnancy and live birth chances with low miscarriage rates. These data further strengthen the argument that PGT-A cannot reliably determine which embryos should or should not be transferred and leads to disposal of many normal embryos with excellent pregnancy potential.

www.nytimes.com/2022/04/20/health/pgta-ivf-pregnancy-test.html

www.thecut.com/2017/09/ivf-abnormal-embryos-new-last-chance.html

Kelb79 · 03/11/2022 14:29

😵‍💫😵‍💫 that’s totally messed with my head! I had decided, I was done with even considering my own eggs….
I had read some bits questioning the validity of testing but nothing quite so compelling!
I really don’t know how I feel about it all 🙁

Presently83 · 03/11/2022 15:16

@Doglover11 it's so, so hard. I just so desperately wanted to avoid another hideous miscarriage - two of mine were missed and happened at 11 wks, one I had to stay in hospital for four days and the other I had to have surgery - because they utterly, utterly broke me.

I actually read all those articles - specifically the Cut one - before deciding to go PGT testing, but I just had to choose one way or another and avoiding a miscarriage was so important to me.

We've decided three rounds is our max before looking into donor eggs, and if we have nothing in the freezer by the third round we'll bung in any embryos we do have fresh. Ugh.

OP posts:
Presently83 · 03/11/2022 15:17

@Kelb79 I'm so sorry for all your losses, it's the fucking worst thing in the world. I think our plan is two more cycles then donor eggs. It's just all so hideous.

OP posts:
Kelb79 · 05/11/2022 12:54

It really is impossible to know at what point to give up. And what advice to trust… it’s all so conflicting!! 😩😩
my AMH dropped off massively after my MC last year (from 5 down to 0.5!!!) which was seriously gutting but has made it easier to accept it’s probably time for me to move on.
@Presently83 your AMH still shows a pretty good chance so I think I’d probably be carrying on trying with own eggs in that situation too 👍🏼👍🏼 Really hope it works out for you 🙏🏼🙏🏼❤️❤️❤️

CailinInUK · 04/12/2022 09:48

@Presently83 sorry to hear about your all abnormal round. I’ve been there several times. But since then I’ve had rounds with euploids, at an older age (most recent at 43, which heartbreakingly ended in miscarriage at 20 weeks, not chromosome related).
With your numbers, it’s very possible you’ll get euploids in future rounds. It just depends on whether you have the emotional, financial and physical capacity to keep trying.

Regarding those articles, the embryos classified as ‘abnormal’ were likely mosaic. Some of those studies were based on older technology (aCGH) that couldn’t detect mosaicism very well. Most PGT-a is now by NGS, which is much better. Important to clarify with your clinic whether they report mosaics and how they define them, e.g. 30% abnormal. If no normals, mosaics worth considering for transfer depending on level of mosaicism and chromosome involved. Lower level of success, however.

I’m going to do PGT-a in New Year, several rounds if needed. My chance of success on paper is really low due to my age but hoping that the fact I could get a euploid this year at 43 stands for something. Climbing Everest would be easier.

best of luck everyone

Presently83 · 11/01/2023 11:05

Thanks so much for your reply @CailinInUK ❤️

I'm so sorry for your late miscarriage - heartbreaking to know the baby was normal too. I'm just so sorry. I'm so sorry any of us have to go through this catastrophic bullshit!

I've swapped clinics and had a consult with the new one yesterday ahead of a third cycle in Feb, so feeling slightly more positive. He said he was baffled by my numbers which on paper seem good. He said he would expect 40% of my eggs to be normal, not zero. He said give it another couple of goes and if we get nothing I think we can assume it's worth stopping.

I've made my peace with donor eggs though. It sounds like the most likely to work route, and I'd love some time off from fucking blood tests and scans!! I'm in comms with some clinics abroad and have been speaking to friends of friends who went down that route with happy results.

So much luck to you, and all of us xxx

OP posts:
Kelb79 · 11/01/2023 11:34

@Presently83 really glad you seem to have taken some positive steps ❤️❤️❤️
it really sucks how much we have to go through with infertility. Anybody that hadn’t been in it just can’t even come close to understanding! It’s hard to not let it define you completely 😐
really good luck with your next steps - keep us in touch with how it goes 🙏🏼🙏🏼
we’re going ahead with a donor egg.
my AMH having dropped so low just doesn’t bode well and, like you, I’m done with the treatment side of things. I feel like I’ve just got my own mind back and I want to keep it 🤣🤣
like you, I’ve been chatting to people who’ve had success with DE and I’ve completely made peace with it and am really excited to get started. We’re kicking everything off next month - taking this month to have a little break 👌🏼
new year, new attitude 😁😁
im done with all this getting me so down!!!

LAURAPAX · 13/01/2023 13:43

reading through similar situations to myself - as suffering recurrent miscarriage. would love to know how you are getting on OP and anyone else on this awful journey xx

Presently83 · 01/03/2023 20:20

An update: we did a second round in December, got 18 eggs, 4 embryos, 3 tested abnormal and one inconclusive. And then at the end of Jan they retested the inconclusive and found it was normal!

We decided to do two more rounds at the new clinic in March/April but then fell pregnant naturally in Feb. I'm now 5+1 but convinced I'm having another miscarriage as today all my symptoms have vanished completely. It's heartbreaking. But I guess we just get back on the IVF train and try and find another normal before transfer.

OP posts:
browneyedgirl626 · 02/03/2023 08:58

@Presently83 this is such a shit journey, I'm so sorry. Have you had any hcg blood tests with this pregnancy? It's such a catch 22, getting pregnant naturally but then knowing it's an untested embryo.

I'm doing my first ever egg collection tomorrow, I feel like a giant egg lol, we are planning on doing pgta on any embryos, I've found it all quite easy and straightforward so far but I know I will struggle with all of the waiting. I've had 1 mmc and 2 chemicals in the last 2 years, am 37 and all of my tests and partners dna frag look fine so it's a bit of a mystery.

I hope if this pregnancy doesn't work out for you, the euploid one does. Have you done any immune testing? Im waiting on results for nk cells xx

Presently83 · 02/03/2023 09:58

@browneyedgirl626 thank you. No, haven't done immunes as I just don't feel that's my issue. Actually I did have the NK / Cytokine test about 8 months ago and it was normal. My clinic told me to keep testing every month but it's a grand and I just don't believe that's the problem, especially after all those abnormal embryos.

I'm not having HCG testing as it won't give me an answer or a solution either way / I'm just going to wait for a 7wk scan and hope 🤞

Good luck with your egg collection!! I always loved the day of collection after collection because you get to just lie around feeling proud of yourself.

OP posts:
browneyedgirl626 · 02/03/2023 10:29

@Presently83 that sounds wise, wait and see what happens. I tired myself out in October when I got a positive test and then spent the next week getting multiple hcg blood and progesterone tests, spent hundreds of pounds and it made absolutely no difference to the outcome, just caused me a lot of anxiety. It's so weird existing in that liminal space between pregnant and not pregnant, it's understandable to want to have some certainty but bodies don't seem to work that way.

I'm feeling quite proud of myself already as this cycle has been a lesson in exposure therapy, all the things I hate including internal scans and needles and now I'm just desensitized to it. This is the first cycle though, I'm sure my optimism will wane if I have to go through it again. I had to go to the Lister at 10:30pm last night to get my trigger shot administered to me bc of the National shortage of buserelin. It all felt a bit mad.

Presently83 · 02/03/2023 12:26

Yeah, there's nothing like IVF to help you get over a fear of needles! It's funny, I said two my partner during the first round of IVF that if it does work I won't mind having had to do it, because it has been really fascinating and I sort of enjoyed the experience of doing it, in a weird masochistic way! It was just so interesting to learn about the science of it all. I won't be saying that if it doesn't work, of course....

OP posts:
browneyedgirl626 · 09/03/2023 15:25

@Presently83 how are you getting on?

We ended up with 6 blasts on day 5 which have been sent for PGT-A. Should get results in two weeks. More waiting!!! I'd just be so happy to get one euploid at this rate. I've found the whole process a lot less stressful than I'd built up in my head. The bit I hadn't anticipated was how rubbish I'd feel emotionally after egg collection when the hormones peak and then drop dramatically. Crisps helped though, lots of salty crisps 😂

NinaBananaMama · 12/04/2023 04:02

Hello all,
i did 6 egg retrieval as last year at the age of 40/41. Got 6 embryos in total and all came back abnormal. Getting the news 2 days before Christmas was also devastating…
I decided to pick myself up, change clinic and start fresh (at nearly 42). I found a great dr that put me on a new protocol which included ‘human growth hormone’. App it’s quite new on the market but does wonders for embryo quality.
Eggs retrieved: 4
fertilised: 2
blasts: 2
pgt normal: 2!!!!!!!!!!

please hang in there and have hope. I truly believe with the right dr and some tweak it is possible.

best of luck!! Xx

CailinInUK · 12/04/2023 08:48

Congrats @NinaBananaMama ! Great perseverance! Would you mind sharing what type of new protocol you were on and the name of the HGH, the dose and when you took it ?
best of luck for your transfer!

Cherry35 · 13/04/2023 12:19

@NinaBananaMama yes please share your protocol. That was a great outcome.

I just had a cycle cancelled because only 2 follicles were grown.

LAURAPAX · 14/07/2023 20:38

How is everyone getting on on this thread? I’m starting ivf - my first egg collection with PTG A next month after two miscarriages in the last year. I am 37 and AMH and AFC on the lower side than expected for my age : ( so feeling the pressure to push forward with ivf. Hope everyone is doing well xxx

Kelb79 · 14/07/2023 23:52

I moved on from OE IVF after 3 rounds of EC which led to 3 aneuploid embryos.
it was a tough decision that we didn’t rush into but I’m now 8 weeks pregnant from donor egg IVF ❤️❤️❤️

LAURAPAX · 15/07/2023 00:02

oh lovely news @Kelb79 i had seen your name on other threads and really hoped you had got on well. Wishing you so much happiness. Did you go abroad for DE? Hope you are feeling well so far too.

I am so so nervous about the future of my journey with lower AMH and AFC. As if miscarriages aren’t bad enough but know I need to do this and hope it’s not too late. Xxx

Kelb79 · 15/07/2023 11:54

@LAURAPAX yes, we went to a IVF Life in Spain - amazing clinic!!! (Plus you get a holiday each time you go for treatment 😝)
I’m struggling quite badly with morning (all day!!) sickness but trying not to complain and just happy and grateful for every day that this pregnancy continues ❤️

good luck with the IVF! What are your AMH/AFC stats? Have you looked into duet and supplements to help with egg quality etc? The sooner you get all that in place the better 👌🏼❤️

LAURAPAX · 15/07/2023 12:45

Ahh hope the morning / all day sickness gets better for you quickly and good here of the recommendation of clinic. A holiday alongside everything sounds perfect!

AMH is 6.1 tested last month and AFC 11. But AFC was 16 in October 2022. I turned 37 in May so it is below average for my age range 😢 I’ve had two miscarriage in the last 12 months - the second one a MMC and haven’t fallen pregnant since so turning to ivf with PTGA testing to hopefully try and reduce the chance of a horrible miscarriage. I know I should feel positive but I just feeling so depressed about everything and so scared of it all not working and spending all our savings on a chance. my partners testing is all is great and my other tests are all fine so just down to old age / eggs : (

I have been taking all the recommended supplements COQ10, omega 3, vit d, vit b etc. only thing not taken is DHEA but will see on that as not sure how my body is going to respond to ivf meds which I start next week.

@Kelb79 was it your first DE transfer with BFP? If you don’t mind me asking, have you been open about your journey with DE ? Xxx