So today we spent 3 hours in total for baseline scans (all good to go! Wahoo!) , nurse consent and injection tutorial (tick and tick), and just as we were ready to go - heads flowing with info - we were asked to have a meeting with one of the trusts researchers, an asked to take part in the E freeze trial (this is a random trial involving 50% of patients receiving standard fresh cycle, while the other randomly picked 50% have a ‘freeze all’ cycle, and your body has a month to recover before transfer. Idea is they ‘think’ frozen rounds may have slightly better success rates.
I came out abit deflated- part of me wants the professionals to give me my most likely chance of success- not a big question which potentially has outcomes too hard to call!!! No idea what to do. I don’t want regrets, and feel i may now whichever way I opt
Anyone been involved in these trials/ has any pros and cons they think would be worth considering before deciding? This has all happened soooo fast I’m scared I’m being rushed into making a decision!
Thanks in advance guys. Xxxxxxxx
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I have heard that freezing eggs and implanting them results in your body and the eggs responding better. I have been told this by consultants and by Accupunturists. However fresh transfers can also cause BFPs! So it’s all up to fate and the powers that be!
I've just had a fresh transfer, but was also lucky enough to have four that made it to freeze. The embryologist said that they'd had better results this year with their frozen transfers! However I don't know anything about these trials and so can't really comment on what is best for you. Good luck with everything xx
Can understand how you’re feeling. Unfortunately there is no fixed answer. Even if you take part in the trial you might be allocated the fresh transfer arm. There is some theory to suggest that frozen transfers may be better hence the trials which are happening all over the country but at the end of the day it is a personal choice. We decided against because we didn’t want to go through the wait for your body to return back to normal after the egg collection but that was purely on personal reasons and we had a BFN so didn’t speed things up anyway! Just do with what you feel comfortable with and don’t try to second guess it and don’t beat yourself up about the choice you make xxxx
At our last meeting my consultant told me that at my clinic frozen results have recently been better than fresh ones, where as previously it was the opposite way round. My personal view is that everyone responds differently to different treatment and that’s probably partly to do with what’s causing the infertility in the first place. I had a successful fresh round followed by 2 unsuccessful frozen rounds. I explicitly asked my consultant did he think I responded better to fresh meds than frozen ones (I have one frostie left and my thinking was that I would just skip using it and go back to a fresh cycle) but he said for me no, it’s down to the quality of the embryos and convinced me to give my last frostie a go.
I guess at the end of the day it’s a really personal decision and there probably isn’t a right or wrong answer. Sorry I can’t be more helpful!
We were offered that trial but opted not to participate but only because more appointments, having to wait for body to regulate to 'normal' and struggling with time off work. I asked a lot of questions to the research nurse and she said the thought is frozen have a better success rate but there needs to be official research in place hence the trial. We opted for the scratch trial instead but were part of the 50% not having it, just have follow up calls with the research nurse now. I think it's important to not be in the frame of mind of what ifs because you could have the same outcome either way. Good luck! xx
thanks so much for sharing - all very valid and really important considerations. i haven't heard of the scratch trial, sounds interesting! Wishing you lots of luck xxx
Hey. Totally understand how u are feeling! I am currently taking part in the e-freeze trial. We were given all the information a while before we were ready to start treatment so we could process it. I had egg collection last Monday and was told on the Thursday that we had been selected for a frozen transfer. To be honest the not knowing what’s happening is the worst part! We made our choice as like you had been told statistics were better if it was frozen however thought if we were selected for fresh then that’s what it would have been anyway if that makes sense! There is no right or wrong so do what makes u feel most comfortable! And it’s never too late to back out we were asked lots if we still wanted to be part of the trial. Hope this helps xx
thanks so much Marietay your response is pretty much exactly how we feel.. my only personal concern is managing the additional month wait/ not knowing the selection till after EC (part of me thinks the reason i am currently feeling positive is because of the momentum, if that makes sense?). Wishing you all the luck in the world with your round - do keep me posted, as ewe may very well be trial-buddies!! xxx
I know exactly what you mean! The week we had our egg collection I was going back and forth thinking have we done the right thing signing up, felt like I just wanted to keep going as it was all happening! I kept telling myself I made the decision for e-freeze when I was more level headed and thinking rationally (not hyped up on hormones!) I was surprised when we got the phone call for frozen transfer that I was relieved. I think I was so worked up purely because I didn’t know which one it was going to be. As for the extra wait, I stopped taking the pessaries on the Saturday (when I knew my embies we’re doing well and ready to be frozen) I’m now on progynova getting ready for transfer so literally the week after EC. Personally I have found the “break” was really beneficial emotionally as egg collection and the week of the phone calls is a roller coaster! Again there is no wrong decision, its whatever is right for you! Sorry for such a long winded post! Wishing you lots of luck whatever you decide!! Xxx
We were offered the trial and I gladly participated because I wanted It. Number 1 is if you don't have good enough embryos you won't be entered into the trial, Number 2 is even if you are entered into the trial, it might not fall on you to do e-freeze, so it's a probability thing.
Pros - I had ohss so that was one of my best decisions. Your body gets to rest from hormone pumps. I have had two frozen transfers which all resulted into pregnancy but not viable, one was an empty sac and the other was a chemical. I'm like 90 percent sure it doesn't have anything to do with frozen embryos.
Cons - you don't get to do transfer quickly, so on human time it seems deferred.
thanks so much kumkums its really helpful to get a take from someone who opted it! I handed been informed about the good number of embs to enter, so that does make a difference! (see, this is why i feel it has all been a bit rushed!). out of curiosity, had you received a prediction prior to meds about your personal risk of ohss? The nurse advised me that people do, but mine wasn't on the system... i think if i knew they felt i was at risk, this would help with my confidence in my rationale for opting in! All i know is my folli count ans AMH is all pretty regular, and i don't have PCOS (which again, they reckon frozen rounds can help manage treatment for people managing this). xx
I don't have pcos but have slightly high follicle count, so I was put on the minimum dosage of stimulation (menopur) and with it, I still had like 56 follicles before egg collection. I'm not sure if they felt I was at risk of ohss with minimum dose of stimulation but was surprised at the way my body reacted to stimulation. Which is good and bad, had 17 eggs retrieved ( doctor didn't bother to aspirate all follicles just picked good looking ones) and we had 7 frozen embryos.
With regards to number of embryos that might be clinic based. I think my clinic will only enter you into e-freeze if you have up to good 5 embryos on day 3. Not sure on the exact number now.
WOW that follicle count is incredible! (mine averages at about 15!! which they said was textbook normal for my age (33) ) congrats on getting so much frozen embs too! I think generally the highest risk of OHSS is over 20ish, but not sure exactly why. Cor it's all very complex isn't it!! xx
I wasn’t in a trial but I’ve done two rounds of ivf where the embie was put back fresh and one where we froze all to have them tested. The freeze all is the one that worked but this is because we knew we were putting back a viable embryo. Nonetheless, I would opt for a freeze all again if necessary because it was easier on my body not to go straight into taking progesterone off the back of taking all the stims drugs. The downside is that you have another set of waiting to do, and I would also want to know that I was able to have a frozen round without down-regulating as I found down regulation drugs gave me the worst side effects of all on my long protocol ivf.
Basically, personally I would be broadly in favour of participating in the trial- people taking part in research is the only way they are going to know what the best outcomes are: you say you want your clinic to tell you what to do for the best but the fact they are doing this research shows that they don’t yet know what is the best.
Hi Lizzielizzielizzie thanks for you thoughts. I should have clarified - in terms of knowing what the best outcomes are, as there’s a few bits of my personal info the nurse mentioned we should have had but didn’t - I think due to how this first round has picked up so much speed overnight... largely being our ‘predictability’ re: hyper - stimulation. The reasearch on freezing so far indicates people best off with frozen may be due to having a history of PCOS/ at higher risk of hyper stim, which I don’t/ hasn’t been clarifyed risk re stim (my predictability rating) - it would be helpful to know even just a little more around this, but there’s simply not enough time to find out (cycle to start in next week).
Or automatic reaction was that anything we can do for forward research is a benefit, but I need to consider both sides rationally I think because of a. The speed, and b. This is our very first and only NHS round, so to change the process / add more unknowns regarding ‘the wait’ post egg collection is daunting. Hope that makes sense - I’m not being utter selfish I assure you - I’m trying my hardest not to jump to an instant decision without considering impact on myself too. I think that’s fair? X
I didn’t mean to make you feel I was calling you selfish at all, I’m sorry if my reply made you think that. I totally agree you have to do what you think will be best for you, and if you don’t put yourself first then no-one else will. I guess I was just trying to share my experience that I found frozen easier despite the extra waiting, and also that, from what you initially wrote, it didn’t seem like there was an obvious “best” answer for you so maybe going for the trial would be best. It sounds like you’re feeling like you’ve been rushed and that’s never good, although we all feel time pressure with our biological clocks ticking. I hope some of the answers you get on here and from your clinic help you to make the decision that’s right for you.
We were offered this too for our first cycle. We decided against it mostly due to the added uncertainty as to whether we'd be selected and also the added wait. We thought that if we had to do two cycles then we would volunteer at that point and see if freezing worked for us. In the end we didn't get enough embryos on the first cycle so wouldn't have been able to participate anyway if we had opted in. It's a tough decision. Good luck x
Thanks for sharing! This was our first raction however this is our one and only NHS funded cycle, and private rounds cannot be included in the trial, so this has upped the pressure on us a wee bit! Jeeeez it's a tough call. if only i was allowed a Gin right now!! xx
Eeeesh there’s so much to take in isn’t there?! At my clinic their data shows LOWER success rates with frozen transfers and my single frozen embryo has only been awarded a whopping 12.5% from my consultant due it being frozen apparently. Contrary to this, the embryologist that we saw when this particular embryo was fertilised and frozen told us there was a 30% chance with each one. And the nurses told me that freeze all cycles were the way they do it in the USA. Very hard to know what to think my dear xxxx
thanks so much for sharing! there really is just soo much to process, with no definite answers or right ways too either! Yes, the clinician mentioned to us freeze all was the standard practice in Japan too now! xxx
We were offered the trial and the main reason we opted out is because of ‘control’. Meaning... there is already so much in this process that is out of your hands and that you can’t control, I didn’t want to have one more ‘unknown’. I’m familiar with the stats and would have preferred freeze all but I couldn’t dictate that. My clinic doesn’t do voluntary freeze all cycles (at least that was my perception because I had asked in one of the consultations). I didn’t like the fact that you wouldn’t know which group you’d be in until after egg collection and fertilization. If they had said from the beginning, we’ll freeze all if you meet the criteria, I probably would have taken it. But it was the not knowing and not being able to mentally prepare for it that I couldn’t handle. In the end round 1 was a bust, round 2 fresh was BFN and now in my 2WW for a frozen so I’m praying this is the one.
I'm exactly the same abcgirl. I was offered the trial, but declined purely based on control. My mental/emotional state is best when I have a plan. And ivf is so unplannable at the best of times, I knew that keeping that one element of control would be right for me.
As it turned out, we only had one embryo, so I wouldn't have been eligible anyway, but it stopped an extra layer of anxiety for me.
I did feel bad not helping with research (ie ivf only came about because someone was willing to try it)....but I had to be selfish in the end x
abcgirl MrsElbow ah thanks so much for sharing - this is exactly the same "but" i currently have, and am trying to rationally weight up (as much as realistically possible). In practice, I can totally see the benefits of the frozen embs in principle/ the importance of taking part in trials, but its the negative impact emotionally and mentally of more unknowns! plus the way this has been sprung on us right at the last minute makes me as a patient my personal care/ treatment doesn't quite feel the focus here, as they haven't considered how putting something like this a matter of days before my meds starts could impact on my stress personally. i think its been the way they have approached it that has made me feel I need to stop and question what's right for us as a couple. x
Hi hunny, I asked our clinic if I could do a freeze all round from the start as there stats are better from frozen and I liked the idea of giving my body time to recover before transfer, I know having to wait another month would no doubt feel like an eternity but I’ve waited this long so thought how bad can one month be! However the clinic won’t do freeze all so the option isn’t there. I wish you well with your round hunny whatever you decide x x
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