Recurrent miscarriage - looking for stories of hope

[Everhopeful35]

I'm going through my third miscarriage (fourth if you count a recent chemical pregnancy) in just over a year. Until now, I've always remained hopeful - I've had the full spectrum of recurrent miscarriage testing done and was diagnosed with a blood clotting problem and prescribed Clexane, and womb scar tissue caused by two D&Cs, which was removed at the end of last year. My husband and I started trying again this year with a renewed sense of optimism but after the chemical, our confidence plummeted and we decided to try IVF - thinking thanks in a controlled medical setting we might have more luck. I became pregnant with twins and took every medication advised by the clinic (Clexane, prednisolone, cyclogest, baby aspirin, even immune drips) but unfortunately I've lost both of them. I'm devastated, but now I also feel like I have no hope left because we tried all we could. The only thing we didn't do was PGS testing, to rule out problems with the embryos, and we've never had kyrotyping either. Would love to a) hear stories of hope after multiple miscarriages and b) know if anyone had success with PGS testing. We have two frozen embryos left and are thinking about screening them before another transfer.

I’m so sorry for ur losses :( it’s a really sad lonely and difficult time.

I had 6 mc in a row when ttc my first. Aged 28-32. I was broken and devastated (One was also a twin pregnancy so I lost 7 ). Been to every single mc expert in the country. I had no diagnosis/cause. Tried it all. I then got lucky with pregnancy no 7 which has given me my son who I adore and I would do it all again in a heartbeat to have him. Every day I’m so grateful I have him.

I think ultimately it’s luck/when ur time is right/sometimes can’t be explained but what I did do having him him was

Pgs and A lot of immunes (I had done immunes for a number of ivf cycles before and for one I conceived naturally but never pgs).

However trying for no 2 doing exact same with frozen embryos from same cycle I’m now not getting preg and so my journey ends but I’m eternally grateful.

Advice

• find a doctor u trust / who reassures and calms u and makes u feel like he cares.
• do lots of research. Work out who is best for you and your issues. I went to mr shehata and argc. Mc with both. But had success with my local care clinic and mr gorgy supporting my immunes In the end. However was it that or luck ? Who knows
• find comfort in ur partner and the things which make u smile - this is what got me through.
• try have some hope in a very desperate time. As shit as it is to say this rec mc does have a good prognosis (easy for me to say but this is what kept me going). I spent hours on this site looking at stories

Those 4 years were so sad I sometimes don’t know how it worked out but it did.

Wish u all the luck hugs and strength to get through a very though time

Xxx

Ps yes get them tested. I know pgs has any negatives but I got to the stage by mc no 6 where I physically and emotionally couldn’t handle another mc. I was broken.

And to know the chance of a chromosomal mc was reduced hugely reassured me massively. And obviously that first pgs cycle worked so I was sold on it!

(However it not 100 percent as I’ve had 2 more pgs transfer and bfn since then)

I did PGS last year and didn't get any "normals" be aware that you aren't allowed to transfer them
In the U.K. so you could have to destroy them all and have nothing left to transfer. Can you afford multiple rounds to maybe get you just one embryo? As you need to factor that in depending on how old you are? My clinic allowed us to transfer a low level mosaic following genetic counselling but it was a BFN

My clinic were surprised that I didn't get any normals at age 36 as at least 50% should have been but I suppose that explains my miscarriages? If you are 40 someone like 25% are expected to be normal and over 40 it's 10% so please be prepared mentally? Waiting for PGS (results can take up to 5 weeks!) was worse than the 5 days post fertilisation as it was heartbreaking to think that we'd got to blastocyst stage hooray but may never be able to transfer them

I know a lady in a thread last year who I cycled with had 2 miscarriages from her frozen embryos and tested her remaining frozen ones and all came back abnormal. She did another round of egg collection and got 1 normal and did get pregnant successfully on her next transfer. Obviously there is also the risk they don't survive the thaw-biopsy-refreeze-thaw again

You should also be aware that PGS was downgraded by the HFEA this year as they said there was insufficient evidence to say it made a difference to success rates BUT everyone I know who transferred a PGS normal embryo had a healthy baby so maybe there just isn't enough people doing it at the moment?

Also PGS only takes 5 cells from the other layer of what will become the placenta - therefore the baby cells itself aren't tested and so could miss a chromosome issue. They take 5 cells from what is usually 100 and so could also miss abnormal cells purely by chance so it isn't an exact science

That being said I'm a member of lots of a PGS social media groups and in America it's much more common to transfer abnormals and lots of women have had healthy babies as some studies suggest that the baby has the ability to correct itself once in the womb (but lots of women have also had BFN from "normal" embryos)

Sorry if that isn't much help as there is no real definitive answer either way to say definitely go for PGS or definitely don't? I'm glad I did it as at least it partially explained our miscarriages but at the same time looking back I wonder why I spent that extra money when I was prepared to transfer mosaics (and probably an abnormal depending on the chromosome affected) anyway?

Thank you so much for your responses and I'm so sorry for both of your losses. @Cream123 - I read your story aloud to my husband and it helped so much. It's comforting to know I'm not the only one who has tried everything. The whole thing is a lottery. Interesting to hear you were with ARGC because that's where I am. I've also just made an appointment with Dr Shehata, who a friend of mine recommended. Can I ask, what were you told about the loss of the twin pregnancy? I think the thing that worries me the most is that it's surely unlikely that both were chromosomally wrong and therefore it's definitely a problem with my body - one that ARGC have been unable to fix with steroids and drips and everything else. I'm glad you recommend PGS testing. I just can't consciously put back another two embryos without knowing they are okay.

@ivfdreaming Thanks for sharing your experience of PGS testing. I must say, I'm scared of not ending up with any embryos as a result but hopefully if I stimulate enough times (easier said than done, I know) I should eventually get at least one normal embryo. I'm 35, which isn't young but hopefully gives me a good shot. We are also going to do karytyping, to see whether we do have a chromosomal issue. Is your current pregnancy through PGS normal embryos?

Hi @Everhopeful35

My argc pregnancies were chromosomalLy abnormal. They were the only ones I managed to get tested and after that I was certain I wanted pgs. At my argc follow up they told me to start pursuing surrogacy.

I luckily then met my wonderful local ivf consultant who turned out pro pgs. Argc had talked me out of it as originally I did want it (I wish I hadn’t listened on reflection but hindsight is a wonderful thing). I did a ivf cycle at care Manchester and got 3 normal blasts out of 4. One which turned out to be my son. (Interestingly my ivf cycle from 4 years prior were defrosted and tested all abnormal and binned - I was so grateful as that could have been 3 transfers and 3 more mc. this is why I then did a fresh and got normals)

Mr shehata is anti pgs to warn u. He also talked me out of it. I know there r reasons pgs isn’t great (poster above has kindly summarised them) but it depends on ur situation.

For me another mc due to potential chromosomes was just too much to handle. No immunes in the world would have saved those argc twins. They were both trisomy. However knowing I was putting a pgs normal in meant if I miscarried again I felt like I couldn’t blame the chromosomes. And maybe I needed diff immunes/there was something else wrong with the embryos/maybe I needed to pursue surrogacy.

My bf had a similar journey (Less mc but more ivf cycles as I had some natural conceptions amongst all this) and her first pgs transfer was a bfn. But her second worked now her son. So it’s not 100 percent..you have to be ready that it may not be ur answer but then at least u cancel out chromosome issues and look at immunes/sperm dna fragmentation/your endo lining and all the other things which can cause mc

I’m actually crazily going for one last fresh cycle after these 2 frozen haven’t taken (we think this is post section issues) And I’m doing pgs again. I’d rather do 5 fresh ivf cycles and get no normals/mosaic (I wouldn’t transfer) than have another mc.

But that’s just where my head and heart are at. ( I also got ashermans after my argc mc which also made it very clear that it wasn’t just my heart but my uterus just couldn’t handle another mc)

Xxx

Ps even if ur embryos at argc were normal lots of other issues other than immunes can cause mc
Sperm fragmentation is worth doing if u haven’t (shehata does this)
Mitrochronial issues with embryo (can’t do anything for this but supplements are sometimes talked about online-obv minimal evidence)
Endometrial lining issues
The unknown

Xxxx

@Everhopeful35

No the twins I have on board currently are not PGS tested. That's why I suppose I'm conflicted on the whole thing? How could I have gone from zero normals on my 2nd IVF cycles to 2 normals on my 3rd cycle (my twins are from my 3rd egg collection) - surely the odds are low? Although the main difference between them was that cycle 2 was short protocol IVF and cycle 3 was the first of the natural modified?

I think it's very individual. I really believe my issues were egg quality leading too poor/average blastocyst quality. So by focusing on fewer eggs with much less drugs then that increased my egg quality massively?

I also did 3 egg collections before deciding on which to transfer And the embryologists spent hours with me going through each embryo and how it looked and progressed and viewing the time lapse before deciding which two to put in (I still have 2 frozen which are ironically graded higher than the ones on board at the moment). I also firmly believed that helped as most of the time clinics don't have a choice what to put back as they usually only have 1 or 2 to choose from anyway? Especially if you are putting 2 in - they have to be of a similar quality - go well together - to have the best chance?

If I was you I'd ask for a review with ARGC - what were the reasons they decided on a day 3 transfer AND a day 5 transfer? Looking back would they have even done the two together?? Why didn't they let the day 3 go to day 5 since they would have a clearer idea of quality by that point? My embryologist viewed hours of footage looking at when and how each embryo divided from point of fertilisation to day 5. They would only do a day 3 as a very last resort and only If there were no other embryos to choose from?

My clinic also said no point karyotyping If you are going to PGS anyway as it's a waste of money to do both?

Also told not to worry too much about sperm fragmentation in our case as the treatment for it is just higher doses of what is in most good male conception supplements like Proceive Max for men and since my DH had been on them a looong time they also said not to waste money -but my clinic is very honest about not paying unnecessarily for things?

Have you ever had any of your miscarriages rested? I did regret not having that done to see if the babies were affected by chromosome issues but I've always preferred to miscarry at home rather than D&C

ARGC from what I've heard is very very expensive?? Do they offer a multi cycle package?

@ivfdreaming I went from no normals cycle one (frozen embryos tested on defrosting( And two (argc mc tested) To 4 years later 3 normal (one my son). Same Protocol same clinic for cycle 1 and 2 .

This whole ivf thing is such a lottery and minefield trying to work out the best route

Sometimes it’s just happens and comes together and sometimes it doesn’t :(

Oh and also
Yes get them tested if u can

I always tried medical management but it never worked for me despite pumping me with Meds and admitting me to try that route....I ended up with retained products for every mc so I had to have d and c and so I managed to get one of my pregnancies tested (others not enough of a sample).

Realise this is an old thread but wanted to see how you got on OP? Going through similar - hope all worked out for you whatever way that looks like. Xx