Update - not good news . What to do next?

[Skittles11]

Both of my embryos are showing abnormal division and it's only Day 2. So frustrated. And yet numb to it at the same time. Don't know what to do next, we were meant to be embryo banking. This was our fifth fresh round, we have had significantly mixed results across our cycles. I'm 36 years old.

Cycle 1 - no eggs

Cycle 2 - 3 good blasts

Cycle 3 - 2 blasts poor quality

FET - Resulting in pregnancy but my baby had chromosomal issues resulting in TFMR

Cycle 4 - 2 blasts, one tested PGT-A normal, one complex abnormal

Cycle 5 - 2 eggs, 2 fertilised, abnormal division. 2 eggs had already ovulated.

I've had 3 transfers to date, 2 negative pregnancy tests and one was was FET TFMR.

We also had an early miscarriage at 6 weeks before we started IVF. We'd been trying 10 months at that point.

We have 2 frozen embryos, one of those is PGT- A tested.

I just don't know what to do now. I'm tired. I felt at 36 I would still have some good eggs left but this latest Cycle has made me question that massively. At 5 cycles I feel maybe I am flogging a dead horse but then only 8 weeks ago we got a normal embryo.

It's the mixed results that I feel are teasing me.

What would you do next in this position? Please be honest but be kind.

Should I keep trying to embryo bank whilst I'm "younger"? Should I try the frozen ones? Should I try lower stims? Or something different? I am also starting to look in to donor eggs as a real option for the future now.

Thanks as always xx sorry for all the posts in the last 7 days

[Hopingforbaby_]

Sorry Skittles! I’ve been watching your journey and hoping so badly you get the positive news your so wishing for. No need to apologize for relying on this support group for support. It’s what we are here for and we are all doing the same thing ♥️ I can’t recommend what you should do but I think if I had two frozen embabies, I’d do the FET because you never know if that’ll be the one to take. With all you’ve been through your medical team must know more now than ever about how you respond and what your needs are so maybe just maybe. It’s worth a shot if you’re up for it. I wish you the absolute best! Xoxo

[Skittles11 in reply to Hopingforbaby_]

Thank you for replying to me and for hoping on my behalf. I keep thinking my medical team should know more than ever what to do too as they have so much bloody information now from the back log of all the cycles I have done. One thing I have learnt is that Human Growth Hormone does absolutely nothing for me as a poor responder xx Thank you so much for your wishes I appreciate them

[Redsequin]

Hello lovely. I'm so sorry you're facing yet another hurdle. I'm not surprised you feel numb. Even just a single round of IVF is emotionally and physically exhausting, never mind 5 cycles plus all the trauma you've been through. It makes me really angry because it's so so unfair.

Looking at your history altogether, it does seem inconsistent, almost like it's random whether you get good embryos or not during any given cycle. Could it be that this time your body still hadn't recovered from the previous cycle?

If I were in your shoes I might have a break and then go for it with my PGT-A normal embryo. I know it's much more ideal to have backups but I guess I'd wonder if maybe that was the one. Either that or I'd have a break and try one last banking round because it's always tempting if you can get good embryos, but I think that really comes down to how much more of this you can bear. I do also think natural or modified natural IVF is something I would try. It's less hard on the body and I feel like most clinics are weird about it but Create has had plenty of success with that method, and the principles behind it make sense.

Lots of love xxx

[Skittles11 in reply to Redsequin]

Thank you lovely. You just hold on to hope each time that things may be better but for me it feels like one obstacle after the other, I seem to keep being in the low stats groups that are usually offered to people for reassurance.

Maybe my body needed longer after the previous cycle, I am not sure. The clinic initially suggested literally back to back where I would start again on withdrawal bleed but when i was scanned on Day 2 my ovaries were not recovered. On the next Day 2 the ovaries looked recovered so they said let's start but perhaps my body needed longer. I don't know what a reasonable time is between cycles, one withdrawal bleed and one additional bleed? Or more than that?

I need to possibly look further into natural or modified IVF at some point, I never really delved into it before. Interestingly another clinic who I consulted with at same time as our clinic were suggesting low dose protocol for me xx Thank you as ever for your kind reply

[Redsequin in reply to Skittles11]

Yea, it's not surprising you have hope each time because you know you can get really good embryos! I guess that's what makes your situation so confusing and tough. I do wonder if your body is just suffering from so many drugs and a 3-month break would help as that's the regeneration time for eggs? So hard to know. Did your consultant have any sage words for what she'd change next time?

I have been researching natural IVF a little for my sister who is having an awful start to her IVF journey. It's offputting that the stats for success are so low overall, and yet I can't help but think it could be the perfect solution for some people, and since it's cheaper/low risk maybe it's worth a try?

Anyway lovely, thinking of you. Hope you get some answers at your review. xxx

[ki50]

Hi Skittles,

How incredibly frustrating, especially the two that had already ovulated I think you mentioned that the doctors gave you a kit for home insemination right? Fingers fully crossed for you that you get your miracle from that!

It's a difficult decision re. whether to try and bank more or go for it with the ones you have, like Redsequin has said I think it does really depend how much you feel you can bear and that probably applies both financially and emotionally, and figures crossed the frosties you have will take if you don't feel up to going through more cycles of banking at this point.

x

[Skittles11 in reply to ki50]

Thank you Ki50. Yes I am so frustrated that two already ovulated. You don't need that at the best of times, never mind when you're looking at 4/ 5 eggs! I need to know what they will do to prevent that next time if we were to go again, I can't have that happen again. As your say the emotional side is heavy not to mention the financial side.

I am worn out. I need to have a good think about what to do next. My doctor did phone me today so at least they checked in. Not that it changes anything but I at least felt acknowledged.

Thank you again for your lovely reply xx

[Picalilli99]

Hey lovely. I’m so sorry to read your latest update. I imagine such mixed results must just add an extra layer of confusion & frustration to an already difficult situation. I can’t really offer much advice - with our situation we so very rarely made it to blastocyst that it made our decision to move to donor eggs more straight forward (although we still probably did an extra 2 more fresh cycles with my own eggs because it’s such a difficult step to take and I wanted to feel sure that we had tried everything!). I think it just depends how you are feeling, what you feel you can cope with because cycle after cycle really can take its toll (even before you factor in the trauma that you have also had to face). For what it’s worth if it was me I think I’d have a go with the tested frostie. Then if that didn’t work maybe try natural modified IVF, before then trying with DE. But these are truly the shittiest decisions to make and so you just have to go with what you think feels right at the time. In the meantime I’m sending you huge hugs ❤️ and wishing you the best of luck with whatever you decide moving forward xxx

[Skittles11 in reply to Picalilli99]

Hey lovely. So nice to see your name flash up. I hope you are doing okay.

Thank you for the reply and the suggestions. I know you get it that it is taking a toll. It is definitely the mixed results that are causing a lot of confusion for me and its very tough to come to a decision when one cycle you have good outcome and the next is very poor, the inconsistencies are something else!

We will have our full debrief next week and between now and then I will obviously be giving a lot of thought as to what our next steps might be xx Thank you again for replying xx

[supportplease]

Hi Skittles, extremely sorry to hear your update.

It is so very frustrating especially as it's inconsistent.

Have you had these 5 cycles back to back? If so, may be consider taking a break and let your body recover from all the meds? It may be that hormones from previous cycles haven't flushed out properly and the next cycle starts so it may be interfering...ofcourse all this is assuming the cycles have been back to back.

Just out of curiosity, have all 5 cycles been done at the same clinic?

Wishing you the very best and lots of strength. Don't forget to look after yourself! xx

[Skittles11 in reply to supportplease]

Hey, thank you so much for taking the time to get back to me with your thoughts.

Inconsistent is definitely how it seems to be. I can't get a clear picture of what to do next because all the indicators are so mixed up.

The 5 cycles have not been done back to back. Cycles 4 and 5 have been done with one bleed in the middle (withdrawal bleed), cycles 2 and 3 also had a smaller gap in the middle.

I moved clinics in January so Cycles 4 and 5 have been with our new clinic. We moved to a clinic in London from one more local to us because I was quite traumatised after my TFMR. Plus I wanted to try a clinic that was willing to try different things. They have tried different things to the original clinic such as ICSI (we don't have male factor but in my particular case they thought it may help with fertilisation) xx Thank you for being interested and getting me to think of these things

[Mudra85]

I'm so sorry things aren't going well for you Skittles. I really don't know what I would do in your shoes. I do think it's worth a chat with your consultant about next steps and what you could maybe change about your treatment going forward. One thing that may be worth discussing with them is including Human Growth Hormone (HGH) in a stims cycle. HGH is expensive and I think it's much more commonly used in the US, but I've seen a lot of women get good results with it. It's not proven and doesn't work for everyone, but I've seen enough anecdotal success stories to think it's worth a shot. Another thing that may be worth discussing is protocol, dosages, and the type and dosage of trigger shot. The protocol can make a huge difference from what I've read.

Something else that I've learned from listening to fertility podcasts and fertility doctors online is that results can sometimes wildly differ between cycles in the same patient, even when nothing is done differently. I've heard the Egg Whisperer mention this a few times. The Egg Whisperer also often gets questions from patients about whether they should consider still trying with their own eggs after a bad cycle/s. Her view is that if they've been able to get a euploid or mosaic in a previous recent cycle that's that's a very good indication that a patient still has good eggs and it may be worth continuing with their own eggs. I've heard her say this about ladies much older than you are too. But it also depends on what you can take financially, physically and mentally.

Sorry, that's a bit of a ramble, but I hope some it may be of some help.

Xx

[Skittles11 in reply to Mudra85]

Hey Mudra, nice to hear from you and thank you for replying to me.

I actually just tried HGH on this cycle and it didn't do anything for me but I whole heartedly agree it was worth a try. I've read it can be helpful for some people, I just don't think I am one of those people. But I am glad I tried it as otherwise I would still be wondering.

Protocol, dosages and trigger are worth thinking about though. I am afraid the clinic will just try and repeat the same things (with the omission of HGH) which obviously did not work.

Thank you for sharing what you have heard on the Egg Whisperer podcast. That is really useful to know. From the cycle outcomes I do seem to be one of those people whose results vary wildly between cycles even with similar protocols. I just don't believe that my PGT-A embryo was my last good egg, there must be more in there, it is just as you say how much I can withstand.

No need to apologise for the ramble, I appreciate the time you have spent thinking and writing the message xx

[Mudra85 in reply to Skittles11]

I have heard that HGH can be helpful for some but not everyone. I'm sorry it didn't help you.

I'd have the exact same worry as you about your clinic just doing the same thing again. They should be tweaking your protocol based on what they've learned from your previous cycles. It sounds as though they are trying to tweak things by trying HGH, but maybe more could be done in terms of your medication protocol.

I think if you got a euploid only a few weeks back that there should be more left too. Plus as someone else has commented here 36 is still quite young in the world of IVF. But it's so exhausting and disheartening going through multiple retrievals and the stress that comes with that.

I hope you're able to get some food for thought as to what you do next. None of this is easy! Xx

[Twiglet2]

Hi lovely, I’m so sorry to hear about your recent embryos 😢 after 5 cycles it must be really difficult to keep going I think maybe the next steps for you is coming down to how you are feeling about trying another egg collection and if you are up for it? As you said you are young and you just got not only a decent embryo but a PGA tested one very recently which is amazing! I would tempted to do one more but maybe change things a little by getting a 2nd or 3rd opinion (perhaps the protocol the clinic etc). That being said those little frozen ones are really tempting to try using and might be the one! If you choose not to do another collection as 5 is (understandably) your limit I wonder whether you could do FETs with your current embryos whilst exploring the DE you mentioned just in case though? 36 is defo still young so I’d be really tempted to keep trying xx

[Skittles11 in reply to Twiglet2]

Thank you Twiglet for sharing your thoughts. It is so bloody difficult to keep going after 5 cycles, when we first started IVF I suppose I was perhaps a bit naive and didn't think we'd still be here with no live baby. I had always known it would take more than one or two cycles, but 5...?! That's exactly what I am struggling with that we only just got a euploid embryo, it surely cannot be the last normal egg. But as you say it's how long we can keep going. My new clinic have mentioned endometriosis a few times too, which was never really discussed at my previous clinic, so I think there is a theory that this is impacting egg quality...it's so complicated.

I just moved clinics in January and at that time I'd had the 3 cycles and one frozen. I consulted with two well respected clinics at that time. Am unsure whether consulting with another clinic now would be beneficial or not. Maybe it would. The protocol is something I want to look at. Not sure how I ended up ovulating early on 2 eggs as was on double dose Fyrmadel... 🤔

Xxx

[Twiglet2 in reply to Skittles11]

Yeah it does sound like you’ve had a lot of expert opinions and advise already, the endo is defo worth exploring too but yeah your protocol allowing you to ovulate early they should absolutely learn from to avoid going forward. I know you’ve been through so much but there are definitely some promising avenues to try with your clinic if you choose to do so. I’ve been following your strength and courage through your journey for a while and I’m really rooting for you whatever your next steps may be 🤗 xx

[Skittles11 in reply to Twiglet2]

That's so nice of you to say, thank you xx

[Sunflower35]

Hi! I had not been told about embryo banking so I never tried that. My endo specialist recommended to try to conceive asap to maximise chances… Perhaps I wasn’t told about embryo banking because I was already 37 when I had my first IVF cycle. I think we have a similar profile (low AMH, endo, only natural pregnancy at 35 ended in TMFR…). Why don’t you change gears a bit by having a transfer of one of your frozen embryos? I didn’t test mine (purely because of having only 2), but they did recommend 1 at a time (which I think in hindsight was probably best in case of another TMFR). If your embryos are tested and you wouldn’t mind a pregnancy of twins, then maybe two? It is a lot to think about but with endo, perhaps embryo banking was a good first step in any case! At the end of the day, there isn’t right or wrong, but what “feels right” in this moment. This whole IVF journey we never asked for is so horrible but I truly hope you soon get to experience a positive outcome soon and can leave some of these frustrating years behind. All the best!!!

[Spheres]

Hi Skittles,

I am very sorry to hear about your last cycle. Did they explain to you how did it happen that you have ovulated early? When I think about the IVF, I understand that the clinics cant be responsible on the number of eggs collected or egg quality (even though I do question that as well, as in some way all of this is driven by protocol), but ovulation is definitely something they need to watch out for and monitor.I think that only you can decide what your body wants you to do (i.e. bank more embryos or pursue the frozen transfer). But if I were in your shoes I would try the luck with a frozen and tested embryo. I think the IVF cycles are so difficult on both body and mind that I would focus on the embryo which is already in the freezer.