Struggling with whether this will ev... - Fertility Network UK

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Struggling with whether this will ever work today

Mudra85 profile image
18 Replies

Hey All,

I'm having a rough day today and turning to you lovely lot on here for some advice and assurance.

On Monday we found out our second euploid embryo transfer failed. We waited over a year between our first failed transfer and this transfer.

[Sensitive - mention of loss] When we started fertility treatment after a devasting TMFR at 19 weeks of a non-IVF pregnancy due to the baby being affected with the gene I carry, I was hopeful that because we were only doing IVF to exclude a genetic condition and were 'good prognosis' patients on paper we wouldn't be on this road for too long. I naively thought that because we'd been so unlucky with our first pregnancy that we were due some luck and that there'd be some balance in terms of fairness. I cannot believe how naive I was to even think this way because life is anything but fair!

Since losing our baby over 2 years ago, we've had lots of waiting and treatment including 2 failed transfers with good quality chromosomally normal embryos. The first was a chemical pregnancy and the second was a complete fail. If our next euploid embryo fails then I will fall into the recurrent implantation failure bracket.

We seem able to produce morphogically good quality euploid embryos, but they are slow developing. We've never had any blasts ready for biopsy and freeze by Day 5, only Day 6 and by exception Day 7. 2 of the Day 6 euploid embyros we've transferred have failed to even lead to a clinical pregnancy.

I'm 36 and I'm starting to worry that despite being able to make euploid and good quality embryos on the face of it, my eggs don't have what it takes anymore to make blastocysts that can lead to a take home baby. I'm fully aware that may sound a bit OTT and there are others who've got far worse stories and have been living this for a lot longer than I have, but I feel like having a baby through IVF if proving much harder than I ever initially anticipated.

We're getting ready to do an EndomeTRIO cycle followed by a third transfer with our last really good quality euploid embryo, but I'm starting to lose faith in our embryos and I'm feeling like if this third one doesn't work we may need to consider other options. I just want this horrible time in our lives to end and for us to be able to move on with the family we both want. But as it stands,we've been stuck in limbo since our loss.

Pretty much everyone I know has been able to start their own family and I feel defective that we've still not been able to. I've distanced myself from friends and family with children because I find it too painful to be around. But it's a double edged sword because I only end up feeling more and more isolated as a result.

I'm losing my faith in the IVF process and whether it can ever work for us. There are so many wonderful stories of people suceeding with IVF, but I struggle to see that happening for us. Maybe we've just had bad luck or maybe something more is going on, but I feel I now need some assurances from our consultant that this can work for us. I know nothing is guaranteed, but I need to know from them if it's worth us still trying in the way we have been or whether we're just flogging a dead horse and should move to something that's much more likely to work.

How long did it take you to finally have success with IVF? Did you set yourself any time lines around when to move onto other options?

Any advice on expectations for IVF working at my age and any other advice or assurance are most welcome.

TIA!

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Mudra85
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18 Replies
Chel91 profile image
Chel91

Totally normal to feel this way, you certainly aren't the only one! 💗 I've been trying for way too long, 10 embryos transferred and still no luck. It's a really hard place to be, to not know if it will ever work and to have life on hold in many ways. Be kind to yourself, you're doing the best you can!

It doesn't seem to me honestly that your age is a big factor, you are still relatively young. It just might possibly take a few more embryos and figuring things out. I would probably bank some more in the meantime, depending on how many kids you want?

The trio test is a really good one to get. Endometriosis is another thing to rule out at some point. Immune / chicago bloods and mediations can be helpful too. Definitely still loads of options xx

Mudra85 profile image
Mudra85 in reply to Chel91

Hi Chel91 it sounds like you have really been through it after 10 embryo transfers. Putting life on hold for an uncertain outcome is one of the hardest things. That combined with the grief and loss, not just of a baby but loss of a much hoped for future, can be devastating.

I do need to get better at being kind to myself. My usual reaction to when things don't work out is to go into research and fixing mode, which only frazzles me more but gives me the elusion that I have some control over this process.

I keep being told that I'm still a relatively young patient in the world of IVF, but the longer this goes on for the more I'm starting to doubt it. I've also realised that being pregnant naturally before doesn't mean you'll get pregnant easily with IVF. I'm hoping that it's just a case of transferring the right embryo, but we've already got part of that bit right with transferring good quality chromosomally normal embryos. If we have three failed transfers with chromosomally normal embryos, it'll put me into the recurrent implantation camp, and if we end up there my feeling is that there's a reason other than it just being shoddy luck. We banked embryos earlier this year, but I don't think my husband can deal with much more of that. He's already completely sick and tired of how this is affecting our lives. I would consider more cycles though if the embryos we currently have don't work. We're planning to transfer those back to back after doing the EndomeTRIO. At this stage I think I'd be happy with just one kid, so the reason to do another banking cycle would be to give us more chances of that happening.

I am also wondering about endometriosis, as I know this can affect implantation, but I'm not sure how they accurately diagnose this other than doing a laparoscopy. Do you know anything about this? I don't have and have never had any endo symptoms, but I've been told that I have very slight adenomyosis seen on a scan. The doctor who did my scan said this wouldn't affect anything, but I can't help but wonder if it might be an issue. Getting some basic immune testing is another thing I'm considering too.

Thanks for your reply and advice, definitely all food for thought Xx

Chel91 profile image
Chel91 in reply to Mudra85

Yes, the only way to diagnose or rule endometriosis out is to do a laparoscopic surgery with a specialist unfortunately.

After all these years, I just did my surgery with a specialist and they found / removed severe endo. They couldn't see any of it on imaging. My new doctor says it is the leading cause of unexplained infertility . Wish I knew that earlier! I have painful periods, but there is 'silent endo' supposedly. It's really hard to know what to do sometimes! Hopefully the testing leads to some answers for you xx

AdviceforJane profile image
AdviceforJane

I am in a similar position to you and feel like I could have written this. We’ve had 2 euploid embryos fail, 1 untested embryo fail and 2 natural miscarriages. After the natural miscarriages all the experts said I’d fall again quickly - when we got the two euploids the clinic said there was a great chance of live birth - didn’t happen.

Like you I have started to wonder if the euploid status really is that important and if grading / day 5-6 development matters more.

I will also be getting the endometrio tests and I’ve had a battery of immune tests too. I was on prednisone for the last transfer which has helped a lot of people so maybe ask your clinic about that

We have no euploid embryos left and I turn 38 this month. My clinic have said it is worth us keeping trying and that we should do another egg collection. But I have kind of lost faith in them and the IVF process.

I think we will do one more egg collection but I don’t hold out much hope for it. I am looking up adoption information. Given that we do seem to get good embryos and the issue is implantation then surrogacy is theoretically a solution but it is prohibitively expensive. I am also reading more about living without children. It is not what I wanted but I am not sure how much more of our money and emotions I can keep spending on this.

This is just the toughest journey and people who haven’t been through it just can’t understand. And I don’t blame them - if you’d told me five years ago how awful this would be I would never have understood.

You have to hope that whatever the outcome there is some kind of meaning in it. But right now that feels very remote.

Good luck with your journey. You are not defective and anyone who had to deal with what you’ve had would find this hard.

Mudra85 profile image
Mudra85 in reply to AdviceforJane

Hi AdviceforJane , thanks for your response and I'm sorry you're also having such a terrible time of it! It's so confusing and frustrating when it doesn't work, especially when using euploid embryos and having been able to get pregnant on your own before. Can I ask whether any of the tests you've done to date have given you any indication of why it might not have worked so far?

My expectations of PGT-A are definitely starting to shift. I often see people say the success rates are 60% / 70%, but in reality it's 50% chance of a live birth at the most and only under the best of circumstances. There are so many other things that factor into whether the embryo can implant and continue developing that at this point in time aren't well understood. I don't think the often quoted study showing that after three FETs with good quality euploid embryos 95% of women achieve a clinical pregnancy is helpful either. I've read of countless cases where that's just not the case and I don't think most clinic achieve anywhere close to that level of success.

I have asked my clinic about predisone before and they were very reluctant about giving it to me, but I'm going to discuss it with them again.

I don't blame you for losing faith in the IVF process and your clinic. It's so hard to commit to and pay for yet more treatment when you don't know why it's not working and you have no idea if you'll get more embryos just for them not to work again.

I think it's always good to consider the options and what is right for you under the circumstances. I feel exactly the same in that I really don't know how much more of this I can take.

People who've not been through this often can't grasp the depth of it. I wouldn't have either without going through it myself.

I keep trying to tell myself that in the end everything we've have to go through will make sense and will somehow help us to grow as people, but in thick of it all it's hard to see any light at the end of the tunnel.

I wish you all the very best with your joruney too. I hope you're able to find a way forward soon, whatever that may look like. Take care!

Blueberry211 profile image
Blueberry211

I can relate to almost all that you wrote. I had three failed euploid hence i fall under the bracket of RIF. Everytime I get told it will work in your case as you re young and all findings are normal and i get slapped with another failure. I have become numb to almost all of this and i dont know how much longer I can cope

Mudra85 profile image
Mudra85 in reply to Blueberry211

Hey Blueberry211 it gets pretty wearing being told after so much disappointment and 'bad luck' that it'll work for you because you're young and there's no reason they've found as to why it shouldn't. One of the hardest things is to have that hope given what you've been told just to have yet more disappointment at the end of another transfer. It's soul-destroying. I don't know how much of this I can cope with either. I'm sorry you're also still going through this hell. I keep thinking next year will be different, next year will be our year. It's now 3 and a half years since we started trying and we have only one loss, a chemical pregnacy, a failed transfer and a load of debt to show for it.

I do hope the next one is the one that works for you, but I completely understand why you say you've become almost numb to it all.

Blueberry211 profile image
Blueberry211 in reply to Mudra85

its like you re reading my soul . This is the first transfer im going through without any hope tbh. Im just going for it and see how it goes. Im so tried of false hope and getting destroyed again. Im always saying next christmas, or next year and still here. All of my friends and all of my ivf friends had their babies.

i do not know what to make of this. I do everything as advised- eat well, take medication religiously, follow post transfer rules, etc and I have nothing to show for my effort.



Mudra85 profile image
Mudra85 in reply to Blueberry211

I think I may have the same attitude as you going into my next FET. It sucks not even being able to be hopeful, but in some ways it may help to lessen the potential disappointment. I'm in the same position, all of my friends who were trying or doing IVF are now either pregnant or have had their babies. Plenty of people we know have also had their second in the time we've been trying. I never thought we'd literally be the last ones still going through this, but here we are. I'm really dreading yet another Christmas and new year with this hanging over our heads. I don't feel I can do another year of this and would now be much more open to creative family planning like using donor eggs, which would definitely eliminate this gene I carry and don't want to pass on, and would very likely increase our chances of success.

It's so unfair when you try to do everything within your power to to make it work and it just doesn't.

Blueberry211 profile image
Blueberry211 in reply to Mudra85

I know xxx sending you hugs

Mudra85 profile image
Mudra85 in reply to Blueberry211

Same to you xxx

LaraCRGH profile image
LaraCRGH

Mudra85  it sounds like you have really been through the mill with a hell of a journey so far. I feel for you and send you love and strength. I'm not the one to give reassurance, because after my own journey of the last 18 months which has resulted in only one 6 -day blastocyst, I am also losing hope. All I know is that many people keep going with IVF and eventually they make their dream come true. I will do my one and only blastocyst FET before Xmas (following investment in ERA/EMMA/ALICE/natural kill cells tests to give my one and only the best chance!), but if it doesn't work then I'll be thinking carefully before January hits whether I want to continue with IVF taking over my life. I'm 43 1/2 now, so I'm reluctant to start new egg collections. I started put on this with no idea how difficult it was. Anyway, that's my timeline and plan, but if that all happens and I don't feel at peace, I may just try again. Let's see. Wishing you lots of luck, hold on to the belief this could work because it still could xx

Mudra85 profile image
Mudra85 in reply to LaraCRGH

Hi LaraCRGH thank you for the love, strength and the kind and encouraging words. Sending the same to you. I do also know that many of those who keep going do get there eventually, although not necessarily in the way they first expected. Wishing you all the best for your transfer before Xmas, I'm also hoping to be able to do my next FET around that time. xx

LaraCRGH profile image
LaraCRGH in reply to Mudra85

Thank you @Mudra85

Staceywacey profile image
Staceywacey

can’t really help as I never even tried with my OE due to premature ovarian failure so we went straight to donor eggs.

I to felt like this was a guaranteed option of us bringing home a baby but 7 BFN & 4 years later it’s a whole different story 😢

I will find out in 2 days if this 8th transfer as been successful 🤞

Just wanted to say you are not alone In how your feeling,I could have written this myself,I just want to get on with our life’s & stop all of this.

I don’t know how much longer I can go on but I also know I can’t stop & it all be for nothing.

The upside is you are still young & I think they say the average ivf is 3 transfers so please don’t give up hope yet.

Sending you lots of love ❤️

Mudra85 profile image
Mudra85 in reply to Staceywacey

Staceywacey I'm sorry you've not yet had success yet. The prolonged time of going through all that you have must have a taken a toll. I'm hoping your 8th transfer is the one!

I'm exactly the same in that I don't know how much more of this I can take, but I also feel that a life without children just isn't an option I want to take if I can avoid it.

They do say an average of 3 transfers before a live birth, but the further into this I get the more I struggle to cling onto that statistic.

Sending you lot of love too ♥️ and I'm keeping everything crossed you get some good news soon!

Skittles11 profile image
Skittles11

Ah Mudra I'm sorry you're struggling at the moment. I am totally with you in your feelings around there being some balance after such a loss, desperately clinging on to the hope that that it will all work out in the end. I guess the disappointment of dreams not coming to fruition when we have put so much in to this puts additional layers of trauma on top of already existing trauma. A question - were all of your frozen tested embryos from the same fresh cycle? If so, and this is only what I would do, but I would I think be very tempted to do a further egg collection and test embryos again.

You asked in your post whether people set themselves a timeline. We didn't set one in advance as we felt this would put us under tremendous pressure and we both agreed we would know when we were needing to change direction, whether for emotional or financial reasons (or both). I can now feel though that I don't have it in me to keep going down the same route after my current cycle. As to what is next that is yet to be determined.

You have another embryo I think? So I would be trying to make the "environment" as hospitable possible before returning the embryo. Have you tried blood thinners or steroids? I dont know much about them but have seen others having success with them. What is the Endome Trio test, is that the ERA, EMMA, ALICE?

Take good care

Mudra85 profile image
Mudra85 in reply to Skittles11

Hey Skittles11 it's definitely layers upon layers or trauma and it feels so unfair after a TMFR, which I know you've also been through. The distribution of luck, if there is such a thing, feels completely distorted. Most people I know who've been through traumatic experiences end up with a silver lining at the end, but for some it feels like the crap times just go on and on, without even a whiff of a happy ending.

The euploid embryo we most recently had transferred was from a different batch of eggs than my first failed transfer. The next one we will hopefully transfer in December will be from another egg collection too. I know that each batch of eggs can be entirely different, so maybe we have one good one in there.

We have one good quality day 6 euploid embryo left. We do have other embryos, but they have much less of chance of working. We have some day 7 euploid embryos, which our clinic allowed to develop for one more day on an exceptional basis because of all the genetic testing we're doing on our embryos. Day 7s are much more commonly transferred in America and they can lead to live births, but it's more like a 25% chance of a live birth at best. We also have some low to moderate mosaics that we could transfer, but again the odds of them leading to a live birth are a lot less (although opinion on mosaics does seem to be shifting). I'm grateful we at least have what we do, but I'm very conscious that if we're having trouble getting our day 6 euploids to work then what hope can we really have in the Day 7s and mosaics. It can happen, but I'm in a negative frame of mind right now and I can't see us being the ones that have that kind of luck.

I think not setting yourselves a timeline in the beginning was a very sensible decision. We didn't either and I agree that you naturally get a feel for when it's becoming too much to contunue as you have been. I hope you're able to figure out how you want to move forward soon, but there must be so much to take on board.

I have tried blood thinners before, but never steroids. I tried to push for predisone after my first failed transfer but they were very reluctant to put me on it because it lowers immunity. I'm going to ask about steroids again though and am considering doing some basic immune testing to at least rule things out.

We're planning to do ERA, ALICE and EMMA (all of those tests together are known as the EndomeTRIO) testing with my next cycle. We're planning to do a modified natural cycle for our next FET instead of a fully medicated FET, as some women do better with a more natural approach apparently.

You take care too and thanks for your helpful suggestions xx

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