Ivf, miscarriage, endometriosis

(9 Posts)
Lavienestjamaisjuste Sat 21-Sep-19 17:52:25

I'm not really sure what I hope to get out of this post really.. Just feeling very lost and a bit hopeless sad As a brief history, started ttc 3 years ago, had 1 natural miscarriage at 7 weeks, diagnosed with severe endometriosis in 2018, fell pregnant for the 2nd time September 2018 but miscarried again at 10 weeks having seen heartbeat at 8 and 9 weeks, had excision surgery in Jan 2019 and have just completed our first IVF cycle this summer which I yesterday found out has resulted in yet another miscarriage at 7 weeks, despite being on both lubion and clexane. To add to the mix DH has morphology issues which is why we went ahead with ICSI. The cycle itself went ok and from 13 eggs we ended up with 2 top quality blasts, 1 put back and 1 in the freezer. I've had the recurrent miscarriage basic testing earlier this year which found nothing...
Sorry I realise I have been lucky to get pregnant in the first place and understand that not everyone even gets that but I hoped this post would be ok on this board - don't want to be insensitive to anyone. I did look on the miscarriage thread but those ladies seem to fall pretty quickly which is certainly not the case for us.
I suppose I'm wondering if anyone is/ has been in a similar situation and what you decided to do next? I used to think it was the endo causing the miscarriages but now I'm not so sure..
I'm thinking possibly about getting tested for NK cells and possibly DNA sperm fragmentation test for DH. I've never had a hysteroscopy so wondering whether that might be useful? I should say I had the 10 week miscarriage tested and it came back normal so very much doubt it's a genetic thing.
Urgh this is so so hard and my heart really goes out to anyone going through this or similar, it's just utterly crap.
Thank you so much if you've made it this far and I'd really appreciate your thoughts.

OP’s posts: |
BoomBoomBoomLetMeHearYouSay Mon 23-Sep-19 15:35:55

I don’t know the answer to your question but if you have read any of Robert Winstons stuff he basically says there is always an explanation, but often the reason just isn’t fully investigated. I would try and do as many tests as you can reasonably afford/ are practical prior to spending more money on another ivf round, personally. To me that is logical more than anything else.

Also Rob Winston says that regardless of what your ivf clinic says they cannot know the embryos are “top grade”. They look normal is what that means but is not an assurance of quality (they couldn’t know that basically).

So sorry for your losses and thought your post v sensitively put.

Lavienestjamaisjuste Mon 23-Sep-19 18:09:02

Thank you for your reply and thoughts- much appreciatedsmile good point about the embryos - I have read that somewhere so good to be reminded. Wishing you well whatever stage of the journey you're at

OP’s posts: |
VenusStarr Mon 23-Sep-19 18:50:36

I'm sorry to hear about your miscarriages @Lavienestjamaisjuste ❤️ don't feel like you shouldn't post here. It took us 16 months to conceive and I had a mmc at 9 weeks, caught relatively quickly 3 months later but had another mmc again around 9 weeks.

We've been referred to the rmc as I'm under an NHS fertility clinic and I think the consultant wants to rule things out (we've never seen a heartbeat and both stopped growing around 5 weeks, but has slow growth). Anyway, as part of my initial fertility tests I was due to have a hysteroscopy in August but got my second bfp the week before. I'm waiting again for this operation. I know I have fibroids so having it under GA as having at least one out.

With regards to the tests you had at the rmc, did they not do the NK blood test, I though that was standard? What tests did you have? I don't know much about dna fragmentation but think you'd have to pay privately for it but might be worth it. I think Tommy's have a research trial for it.

I really hope you do get some answers and your baby flowers xx

Lavienestjamaisjuste Mon 23-Sep-19 20:27:22

So sorry to hear what you've been through @VenusStarr it just feels like such a hopeless situation sometimes doesn't it? Really glad to hear you've been referred to rmc - they test for thyroid antibodies, antiphospholipid (sp?!) syndrome (sticky blood) and a couple of other autoimmune diseases e.g. lupus but they don't do NK cells as standard- it's a fairly new and reasonably contested area of research i think, which doesn't have any real scientific proof so it's hard to know whether it's worth it or not. They should also do a detailed ultra sound which can sometimes show some issues - but of course, mine came back clear hmm (which I'm happy about, just doesn't give me any answers!).
I really hope the hysteroscopy and fibroid removal will be just what you need to be successful - you are doing absolutely everything you could do so please be kind to yourself as much as you can. Thank you for your reply, as much as it's horrible that anyone is in this situation it really is comforting to know you're not alone xx

OP’s posts: |
Marmite83 Tue 24-Sep-19 18:57:07

I'm so sorry for all of your losses @Lavienestjamaisjuste and @VenusStarr. Your thread stood out to me as I also have endo, have had 2 mmc (one following IVF fresh cycle) and have started the ball rolling for an FET following the second mmc. I've spent a total of 3 and a half years ttc now, I am incredibly lucky to have one 3yo dd to show for it. It's so hard to know what the best way forward is. My IVF clinic suggests certain tests but they all cost so much it's hard to know what to do for the best. I think we're going to try one FET and if that fails or ends in mc we may pay for some testing. Good luck with whatever you decide!

Teddybear45 Tue 24-Sep-19 19:02:57

IVF clinics should offer the NK protocol (steroids and lipids) for unexplained miscarriages / infertility even without needing to pay for the extra testing. I suggest just asking your clinic to try the protocol if it’s the only test that hasn’t been done. Also, did they test you for the MTHFR mutation?

shazzz1xx Sat 05-Oct-19 10:17:50

I had IVF ( ICSI ) due to male fertility (really low/poor sperm)

my first cycle last year resulted in 5 eggs only 1 fertilised.. transferred that one 3days after and it was successful but we miscarriaged at 10 weeks.. no eggs left so had to start another cycle 2month after my miscarriage and it cost £5000 we got the same outcome at egg collection only 5 eggs retrieved and only 1 fertilised.. so we transferred it again 3 days after and ive just had my baby girl she is 10 week old... July 2019... don’t give up.. Good luck for the future ❤️

RyvitaBrevis Sat 05-Oct-19 13:23:03

I'm so sorry for your losses and for all your struggles. I can't help much, but on the question of whether your endo be a factor, I think it is still a possibility. I've heard on the Endo UK boards that steroids can sometime be helpful in IVF with endo, so perhaps it's something to look in to. I've also read that FET might be better than a fresh cycle if the issue is that the stims are inflaming endo, don't know if that's any use.

Excision treats endo but it doesn't necessarily cure it. I've had successful excision in the last year, and yet I still have some endo symptoms (pain, endo belly, bloating), though not nearly as bad as before. It is possible that endo is still present, either because microscopic lesions have remained or begun to grow back slowly, or because there is something different going on at cellular level in people with endo. There's a theory that some endo originates in the stem cells. But, as Marmite shows, plenty of reason to hope nevertheless!

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