Hi all, I was wondering if you could tell me a little about your experiences of testing!
We've had 2 implantation failures (both FET, donor sperm).
They suggested PGS after the first failure, or at least told us it was an option because we had a lot of embryos. (We have 6 more frozen). We decided to try one more time as it was the first time my body had even attempted to get pregnant (same sex female couple). But anyway the 2nd time didn't work either so we thought maybe we should test. We were about to sign the form but I worried because it says they have to destroy any embryos that come back abnormal. But I've read that they might be v unreliable (despite the info video we were given saying they were 95% accurate). I noticed the HEFA says it is a red add on, meaning it has no affect on live births or can be harmful! I was shocked!!! I know for some it doesn't help (usually younger ladies) but I thought it might possibly help. (I'm 35, eggs collected at 34).
I've read how some of you had repeated failures or miscarriages but when used a tested normal embryo it worked!
Others I've read it made no difference or all came back abnormal but next time it worked anyway.
I am just concerned about the HEFA rating and need the science as to why they gave it that! The papers I've read show it works for some but not for others!
I've also never had regular periods and am starting to wonder if testing my receptive window would be more useful.
I have a consultation this week to discuss with doc but would love your stories first please. Good and bad of course xx
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I don't have much info, but didn't want to read and run. We've had 3 transfers and 3 miscarriages so PGS testing is something we've looked at.
Our clinic advised us against it though. In essence they said, you'd simply be reordering them and would we discard some. We decided that we probably wouldn't and so we're carrying on as we are
😬
We've said we're going to do Emma/ Alice if it happens again.
We've had pretty much every other test, this time and they've all come back negative.
Thank you for your reply and your story. I'm so sorry to hear about your miscarriages it must be horrible. It's interesting that some clinics are advising not to do it! (And indeed thr HEFA don't think it's a good idea), but others suggest it is good! I regards to 'just reordering', I wonder if that is maybe a good thing anyway for us. Say only one is deemed normal... we'd use that one, and not go through 5 more others that are likely to fail anyway. Potentially saving us time, money, and the heartache. I just don't like the idea of discarding some when the test could be wrong or there could be a change in thr science/recommendation. I've read some clinics (I think in USA), have put in abnormal embryos and they've resulted in a live healthy baby. So it's made me skeptical. Hmm...
Can I ask what other tests you've had done then?
These 3 are the only ones I've heard of!
We also did 'care maps' for extra embryo grading but that was completely pointless. Weve used two top grades embryos (A1,1,10, different mapping to most but that's the best they grade it as, but still both implantation failures).
Yeah, it's a tough decision based on what it is and how invasive it is/ what various countries and research papers say on it and the opinions of different Consultants and clinics. We may change our minds, if we need another full cycle, but with 3 in the freezer, we're going ahead without for now.
We have a friend couple, who swear by it. She had 4 miscarriages, had PGS testing on the next round and they now have two lovely and healthy kids.
All 3 of ours so far were 5Aa (the best grade, in the way our clinic does them). The 3 in the freezer are lower grades.
Can you have PGS on frozen embryos?
I'll DM you the other tests we've had, if you like?
Yes they have to thawed the embryos, take the few cells they need, and then refreeze them. The when we want to use them obviously thaw again. So there is a bit of added risk with multiple thawing, but low, like 3% risk of them not surviving. The thing that worried me too was that they cells they test aren't actually the cells that go on to be the baby. They are the cells that go on to be the placenta! So I'm not even sure why it is relevant! (I'm sure it is, I just don't know the science!). But some are saying the cells can correct themselves! Yes please about the other tests of you don't mind! I'd like to be ready for our consultation armoured with knowledge! Lol
Mine were graded differently. The original grades were numbers 1.1.10. Basically the first two numbers want to be closest to 1 as possible and the third closest to 10. I had most 1,1 10s, with some 1,1 9, a 1,1 8 and a 2,3,8. (I think) Anyway, they were all good grades so didn't really mean anything to me.
Even the 2,3 is pretty good!
But I have no idea what a 5,a,a means? I assume pretty good too with a's!??!
No idea on gender, no allowed to know in the UK!!!!
Are you allowed to find out by PGTA? Where are you??
Canada US might have different grading system, yesterday i did test at home nd sadly it was Negative nd it was 13 dpo 5 days blastocyst 5aa. So i hope miracle happens in blood test
Oh im sorry to hear about your negative test! When do you get a blood test? My clinic just does home tests! But I see so many that do bloods! Seems more accurate!
There are also lots of grading systems in the UK that use numbers and letters! So annoying they change!
It's so annoying that this doesn't work all the time. I'm just about to start my third FET. I started my drugs today to bring on my next cycle.
I still can't fathom how they haven't created more of an accurate science yet! I just want it to work!
So in short:No impact on live births i.e. if you have 10 embryos collected live birth would be the same whetr you tested or not
True: 95% accurate is not correct as the biopsy could miss some genetic material / there is also a theory about embryos self correcting ( check on Google)
We decided to go for it as I had 2 early miscarriage and one neg after transfer so I wanted to know whether it was an issue with the embryo or my uterus
Out of 5: 3 normal, one abnormal and one that did not survive the biopsy ( to your point about danger of pgs)
Also decided to do it as I'm almost 39 so time not on our side and if the embryo came back as abnornal we would have done another back to back egg collection
If I was younger with no early miscarriage I would not have gone for pgs ( cost was 3.400
Thank you. So your interpretation of the "no effect on live birth" is that ultimately it won't change anything (except perhaps you lose one!... and know which ones to out back in if you have a lot to choose from!) Weve been on this journey a while now (although only 2 failed FET, its taken since 2018 to even get to this point with canceled transfer, a cyst that had to be surgically removed, delays with donor sperm etc etc!) So we too would like to reduce the time it will take if we can! Plus reduce the heartache of putting in am embryo that was always destined to fail. If say we only have one normal, but have to go through the other 5 first it would take more than another year and a lot of pain. Plus if we also need to do another full cycle, then sooner the better!
Hmmm... I had convinced myself maybe it wasn't worth it. But now maybe I'm swinging back to being worth the risk!
Yes I think ultimately in you have a batch of eggs it won't make a difference to live birth but pgs does reduce the heartache of early miscarriages or no heartbeat at the viability scan for example.
It also gives you an overview of your eggs quality and whether you should focus on your uterus receptivity
Also all things considered if you have many eggs each transfer also add to the overall costs.
Did you have 2 negative tests or any chemical ? What day did you do your pregnancy tests?
Progesterone is also very important on the day of the transfer. Did they test your levels?
What's the grade of your embryos?
Re. Era test, I asked my consultant ( who pushed for it)o howw many of his patients had a different window and he said not many . Didn't do the Emma test either. But I did a hycosy test instead. Less invasive and no recovery or wait.
Just two negative tests. On the first one we waited until day 14. On the 2nd one we tested day 7, 8, 10 and 14. All negative. So possibly an implantation issue, but we don't know if that's due to uterus or embryos.
Possibly thinking of exploring the window as my periods have been very irregular (between 30 and 75 days), although a bit more regular recently. Not sure if that would actually impact on the window or not as that's more likely related to ovulation. But as we are doing medicated it shouldn't matter! But just thinking they might be related.
Progesterone was tested day of transfer and on the low side so injections added in in the first try. 2nd try we did the injections as soon as we started progesterone, didn't check the levels that time as they said there was no need.
All embryos so far were the top grade (A1,1,10), we have another top, then 4 slightly below and 1 slightly below again, but all considered very good quality. We did some extra testing on those whilst they developed into blasts, but because ours were all top it made no difference at all!
I've read quite a few stories like yours though saying as soon as they transfered one that had tested as normal, it worked!
You are lucky to have a great number of good quality embryos in the freezer!
Re. Testing and then pregnant...well it could all well be luck and 3rd time lucky (it's my 3rd transfer) but this is a second cycle with a diff protocol with a much better ( and expensive!!!) clinic.
So maybe my embryos were better quality ( diff meds, growth hormones etc) or the embryologist better or maybe it was just luck
It could be that women that go for pgs had already failed cycles/transfers so the embryos tested are v different from the last one.
I've became so cynical about the IVF industry...NHS mainly wants to save money and private clinics just want to increase profit for their shareholders and inflate their success rates.
Pgs are a useful way to increase the success per transfer so no wonder they push for it.
Re. Window of implantation it's only useful to know how much more progesterone you need before your transfer. Your cycle length /irregularities are a different thing.
Btw my clinic only does 6 days transfers for FET instead of the usual 5
They discouraged any other rtesting other than the PGTA! And to be honest they didn't massively recommend that either at our stage! The only reason it might be good she said was to reduce some time (and heartache). She kind of thought try for 3rd time lucky tho. But we decided because we would also like a sibling, we may as do the testing now! So we've signed the forms and away we go! I think it will be about a month until we get our results!
How's your pregnancy going? 12 weeks now? Do you have a scan coming up??!
Hope you'll get good results. I waited 3 weeks and we had 3 normal out of 5 . I'm 38 so was v happy with the resultsSo 3 out of 10 retrieved. Each steps of IVF is a fight against the odds
Its nerve racking and so intense
My scan is in 2hours. I'm super scared and excited. This is a big milestone...
A massive one! I hope it's amazing for you!! We retrieved 20, 18 were mature, 10 fertilised, and 8 made it to blastocyst. We've used 2, so testing 6. I guess we won't know what the first 2 were! I'd be happy with 3 normal too!
Yes we went for it (PGT-A) in England. Came back with 5 out of 6 being normal. Haven't tried again yet since we got the results, so don't know yet! Aboit 6 weeks until we do the next transfer, so 8 until I'll know if it works!
I am in a very similar position! Im in a same sex couple and using donor sperm. I went to an nhs clinic and did two rounds of IVF and I'm now changing to a clinic in London.
To cut a long story short, age 33/34 I had 2 x fresh transfers that failed (heavy bleeding 7dp5dt). I had a FET with lots of extra progesterone and an endometrial scratch and had a chemical pregnancy.
The clinic in London does encourage the benefits of pgt-a but we're not going ahead with this due to the articles we have read. We're planning on doing double embryo transfers as each embryo has a 30-35% live birth rate. We've both just turned 35 and are starting a 3 cycle embryo freezing package.
I'm not sure our clinic would allow us to do a double transfer. But that totally makes sense as well. I'm guessing if you're about to start a package you don't have any frozen already?
Yeah I still have one frozen embryo but our thinking is to bank as many as possible over 3 cycles. I was offered a double transfer from the embryologist and nurse at my nhs clinic. I wish I'd have gone for it in hindsight!.. may be worth asking about double FET or moving to a clinic that will do this?
I'll mention it at the consultation tomorrow and see what they think!! They may let double transfer for untested embryos. Its so hard deciding what to do!!!
Sorry for the late reply! We were so confused still! The Doc convinced us that we didn't need it and half way through the appt we had practically decided to try another round. However we kept playing devil's advocate and by the end of the session she asked if we would 'regret not doing it'. We realised that we would! She also asked if money wasn't taken into consideration then would we do it and my wife answered 'yes' straight away! So we realised we had our answer! It IS expensive, but if it saves us even just one round, then we have broken even! If it saves us too, we've saved money. So we are going ahead! We signed the forms this week! Either way we will have knowledge, and I'm glad to have just made the decision!!!
I did ask about a double transfer and they said no!!
Hi, thanks for your reply! I don't think I'd consider it at your stage either! As you are both a bit younger (PGS as only been shown to be beneficial for over 35! As you and your partner are less likely to have lots of abnormal!) Plus it's really only worth it if you have lots! The consultant suggested it to us purely based on that reason. Otherwise a lot of money, and you may as well just try them! Whereas we have 6, and if we only have one or two normal we could avoid putting back another 4 failures. So paying out the money might actually save us some, but it wouldn't for you. Like you said there is an element of bad luck! It could just be 3rd time lucky for us anyway! Who knows.
The first consultant seemed to think it was a good idea, the second didn't so much, but in the end asked if we would regret NOT doing it, and we think we might. This way, even if it turns out pointless, we have the information, and hopefully info that will help is for a sibling too. And if it turns out we have lots of abnormal then we don't have to heartache of using them, the wasted time, and can start another full round!!?
I think I'm convincing myself!!?!
Can I ask why you went for thr endometrial scractch? (I'm not sure what they're for!?)
Very good luck for your journey I'd be interested to see if it is 3rd time lucky for you too! (I hear a lot about the 3rd!)
We are currently going for me carrying my own eggs (my wife only has one ovary and we think there would be problems with stimulation, so it probably won't be her eggs. If I keep not implanting though, her carrying is an option too!) I guess we are lucky that way
Thanks Hope, I hope it's third time lucky for you 😊
I wouldn't consider PGS at your age either. Over the last two years I've been part of countless forums and facebook pages and it's so common for it to take at least a few transfers. You are young, I'm sure it will work out for you both!
Oh I know us too! I was absolutely devastated! Crushed! When it didn't work first time. I wanted all the tests under the sun. Then I joined some same sex couples groups and seen that it's really common for it to take at least a few transfers until success. This process is really eye opening
Sorry I don’t have any advice on the PGS testing but my wife and I have had 2 failed FET’s too and I was really starting to feel like it was something I was doing/not doing.
I’m 28 and we very naively thought we’d get pregnant first time as well. I was starting to feel like our clinic were just palming us off as they didn’t seem concerned that the other 2 haven’t taken but it seems as though this is common.
Can I ask what blood tests you all had before the IVF? If any. We changed our IUI cycle to IVF after being over stimulated so we didn’t have any tests, not even an AMH.
We'd had AMH and a few others LH, FSH, progesterone etc. Just checking the usual cycle. But they don't matter so much with IVF to be honest as its so regulated with drugs! The AMH one obviously tells you about your egg reserve but nothing about quality and you can't do anything to change it anyway. So I wouldn't worry! You are also only 28 which is really quite young in the ivf world, so I wouldn't worry! I'm starting to see so many 3rd time lucky stories that I wish I'd just know the first two weren't so likely to take! Do you have any frozen embryos to try for a 3rd time?
Our doc seemed to think that there was absolutely no need to test at the moment and we should just keep trying. No clinical reasons for more testing! (And I really doubt there is anything major that can change it!) As long as you're close(ish) to a healthy bmi and you're not sucking vodka out of a bottle I think you're fine!
A lot of people will advocate some old wives tails of things you can do to help, and of course none of them will do any harm so if you think they will help then they can be good! But I always think about the thousands of women who WERE out sucking on vodka and accidently got pregnant ! They didn't eat any pineapple core or drink raspberry leaf tea, or even take pre-vitamins! So I don't think you're doing anything wrong. It's just sods law!
I'm saying all of this but we HAVE decided to test now. But just the embryo chromosomal test as we have 6 frozen and if possible would like these to be 1st and a sibling! It may not be useful for us and be a waste of money but at least we can be armed with knowledge going forward! We thought it might be good to know either way! If they all come back normal and we've wasted a few of thousand, at least we know they are good and we don't need to do another full round. If they are abnormal, then we can plan what to do next. But to be clear the doc said she didn't really think it was necessary and wouldn't change whether we became pregnant or not, she said it MIGHT reduce to time taken to get pregnant, and there we have it. So we signed the forms this week!
It will be about a month before we get the results!
So what's your plan going forward? Do you have an embryo to try?
If you have the embryos there to be tested then I suppose it makes sense to explore all avenues. I’ll have my fingers crossed for you that everything goes well 🤞🏻
We have two embryos left, both ‘ok’ish quality so we’re using them both at once. It took me a while to get my head around the second failure so I’m trying to arm myself with as much information as possible and try everything I can. Like you said, it would almost be better if someone told you the first 2 are unlikely to work from the get go!
We did lots of research before starting the process but it’s all such a minefield and we find ourselves constantly asking questions after finding out new things.
I wish I could sip on vodka! It might ease the stress levels 😂 I’ve been furloughed from work for the last 9 months so have had far to much time on my hands to think about it. I’m having my first acupuncture session on Saturday and it was during the consultation meeting with her that I found myself asking lots of questions about blood tests as she seemed shocked that I’d not really had any. I’m hoping this site along with some acupuncture will help make me feel more at ease.
Your the second person to mention doing a double transfer and the second to mention acupuncture! Our clinic said no to doing a double! Didn't even want to consider it!
Can I also ask where you are getting acupuncture at the moment, as I thought they may be closed due to covid?
I think our clinic have only suggested it because ours aren’t the best quality. Both of our other FET’s were single.
We read loads of good things about acupuncture and then when I joined here I noticed a lot of people were recommending it. They are allowed to have patients if it’s due to medical reasons. I found a fertility acupuncture specialist and although I’ve not had my first appointment I found the initial consultation helpful enough that I’d recommend it just on that! I’m using Verity Allen Acupuncture if that helps 😊
Oh it's so common. The name of one of the Facebook Groups I'm part of is TTC LGBT IUI IVF RE ONLY. RE stands for reproductive endocrinologist (fertility doctor) so it's not a group for people home inseminating. There are same sex couples from all over the world who are part of it. The way I think of it now is by drawing a comparison to young healthy hetro couples. There are young healthy couples out there making these embryos every month and it can take some cycles to get pregnant. It's just so hard to feel patient because every time 'it fails' it feels like a mini bereavement. There are lots of feelings of grief, but how can there not be? We know what is happening every step of the way and are so physically, emotionally and financially invested.
Sometimes I wish we had asked a friend to help (if you know what I mean!) But we chose not to do this because all the difficulties that might arise etc. Probably would have been easier though! 🙈
In terms of tests, we had AMH tests, thyroid tests and the usual screening ones (HIV, full blood count, chlamydia etc) I had a karyotype test done because of a family history of miscarriage.
This week my partner had a baseline scan although this wasn't a test as such it's to check all is well for her starting her cycle. She had 17 resting follicles so I really hope this is promising!
This is so true! I have hetro friends that it’s taken ages for as well.
It just feels worse because everything is a waiting game and completely out of your control. I was definitely not ready for the feeling of grief that’s for sure! They should put a warning label somewhere so you’re prepared for that part.
Thank you for your insight, it’s so helpful to know how other couples are dealing with everything and that we aren’t alone.
I completely agree with the friend thing, it would be a nightmare in the long run!
Thanks for the test info, we literally only had the screening ones so I’ve just managed to get an appointment to get some of the others through my GP as our clinic don’t seem keen on doing any other tests.
Great that the baseline scan went well, hopefully it’ll be the start of things to come 🤞🏻
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