Ivf, miscarriage, endometriosis

[Lavienestjamaisjuste]

I'm not really sure what I hope to get out of this post really.. Just feeling very lost and a bit hopeless :( 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.
X

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.

Thank you for your reply and thoughts- much appreciated:) 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

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 xx

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 (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

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!

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?

Hi
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 ❤️

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!

@Lavienestjamaisjuste hey, I know this is an old thread but just wanted to check in and ask how you're doing? I'm 34, I'm just experiencing my third miscarriage and I was recently diagnosed with severe pelvic endometriosis, fibroids and a polyp. I have a referral for fertility treatment and I am hoping we will be offered IVF. Was just wondering what your outcome was?

Thank you xx

Hi @Tor88 OP here - I'm so sorry for what you're going through, I remember the pain and sadness so so well.

Hopefully my story can offer you some hope - we went on to be incredibly fortunate and have two babies (I have a just turned 2 year old and a 3 month old) both conceived naturally. The third miscarriage I had turned out not to be a miscarriage after all but I ended up having to have a TFMR at 16 weeks end of November due to severe fetal abnormalities. I then fell pregnant the following February and then again when she was just turning 1.

I wish I could tell you what I did differently but the truth is that there is no single thing I can pinpoint which made the difference. I wonder if I was perhaps more fertile after the TFMR as my body learned how to carry a baby, or whether the IVF drugs kick started something. My husband was suggested to take a supplement called Menevit (similar to Impryl I think) which may or may not have helped. I also took high dose folic acid. And of course the excision surgery i had.

So yes we have been extremely lucky. It certainly is not the life I was imagining for us 3 years ago and we were prepared to do as many rounds of IVF as we could manage emotionally (and could afford). The IVF consultant we had was always very optimistic about our chances given our ages (33 when starting) but I remember feeling so utterly hopeless at the time.

I really hope you will be as lucky as we were xx

@Labradormama1 thank you so so much for replying ❤️ That's so lovely to hear that it all worked out for you, and that you now have two beautiful babies!! My absolute dream.

We are a tiny bit older than you were - I was 33 when we started TTC but that was a year ago, so currently 34 and DH is 35. I think our ages are ok now but I really worry about trying to get a second baby too. I've always wanted a family but realise at this point I will be lucky to just get one.

I've been advised not to have any surgery on my endometriosis, which is a bit scary as I know a lot of people have had better success after. The logic I was given (by an endo/fertility expert) was that that surgery can deplete your ovarian reserve (I have an endometrioma on my ovary so perhaps this isn't the case for everyone). My AMH is 8 which is very low for my age, and I think sadly my undiagnosed/untreated endo has caused this. We've been advised to consider freezing embryos for baby no#2, but before I got a chance to start looking into this I got pregnant again. We don't seem to have an issue there (though this one did take 4 cycles of diligent trying), but each pregnancy has been shorter than the last. It's as if my body is getting worse with it.

I liked what you said about your body learning how to get past the first 12 weeks (although god I'm so sorry about the TFMR after all you'd been through, that must have been so difficult).

Anyway don't know why I'm rabbiting on, but thank you that honestly has given me some hope.

Can I ask a couple more qs if that's ok? How severe is your endo? And do you know your AMH value?

And finally, it sounds like you did nothing different in your successful pregnancies so I'm guessing the answer is no - but is there anything lifestyle wise you'd recommend?? I'm on all the supps (and have just ordered 'it starts with the egg'), but thinking of going whole hog and quitting caffeine and the odd much needed wine. I'm grasping at straws but anything to make me feel like I'm doing something I guess!

Xxx

Hi @Tor88 I'm sorry youre going through this. I remember the all-consuming uncertainty, pain and anxiety well. Hoping I can give you a little more hope. I was diagnosed with stage 3 endo. I had excision surgery and removal of an endometrioma from each ovary. My AMH was quite high before surgery (probably because of my PCOS) and the surgery did have an effect. I think my AMH dropped by about 30% so I can see why the docs aren't recommending it. The surgery didnt really help me so we decided to pay for IVF as I was getting older and we had been trying for 2 years with not a single pregnancy. When I started IVF I was advised to take pro-biotics, pregnancy vitamins and was also prescribed progesterone. If you fall pregnant naturally I'd recommend asking to have progesterone prescribed, the NHS has recently started offering it to people who have experienced miscarriage previously as it's been proven to help prevent miscarriage in some cases. If you do IVF I'd imagine they'll prescribe it anyway.

I fell pregnant from my first round of IVF but suffered a miscarriage. I then fell pregnant from my first FET and she's now just over two years old so I got my two babies eventually. My second was born when I was 37.

I'm happy to answer any IVF questions you might have.

Oh and I also followed an endo diet, I can't say for certain that it helped but it made me feel like I was doing everything I could.

@Marmite83 thank you so much that's all wonderful to hear 🧡❤️ and I'm glad you got your babies in the end. And I love marmite, so I feel an affinity to you in so many ways haha! Maybe it's an endo thing...

Yeaj it's a horrid place to be, I hope so much that one day I can look back and see this time as a horrible blip because it all worked out in the end.

I have been prescribed progesterone for this most recent pregnancy, so I have that ready to go now for the next one. And I was taking aspirin too.

Can I ask what sort of endo diet you were following? I'm considering dropping gluten which seams to be the main thing recommended (though am also veggie, so it's gonna be tough!), But there's also all this low FODMAP stuff? I basically want to overhaul my lifestyle a bit to focus on health to at least feel like I'm doing something. I'm not terrible but between three pregnancies with nausea plus three miscarriages I've put on a stone this year and my excercise has been very erratic.

I do have a question re IVF that you might be able to answer. Do you think I'll be offered any IVF on the NHS when I've fallen pregnant three times without much difficulty?? My appointment is in Nov, I'm worried they'll just say no? And, do you know if you can freeze embryos on the NHS for future, or does that have to be private? That's what we've been advised coz of the low AMH...

I also was told I have a uterine polyp I should get removed, I fell pregnant before having my hystoroscopy, but I can do that now which gives me some hope because maybe it's this polyp causing it all 🙏

Thank you again for replying xxx

@Tor88 I cut out dairy, soya and carbs with hi gi, so anything white I replaced with brown eg bread, pasta. I replaced potatoes with sweet potatoes. I also cut down on refined sugar which I think was the hardest part because it's in so much food. I did lots of reading on endo diets online and followed as best as could. From recollection, I think the dairy was more in relation to PCOS (I also moved to organic meat where possible) so might not be necessary for you, as I imagine that would be harder for you as you're vegetarian.

When I was trying for my first, my nhs consultant told me I wouldn't be eligible for IVF until I had gone two years with no pregnancies (I'd just had a miscarriage so that apparently re-set the clock). It may have changed now though as that was about 7 years ago. There may be some other things they want to try first anyway.

We went private for the IVF we did 4 years later because we already had my eldest daughter by then so weren't eligible for IVF on the NHS. I believe freezing embryos is standard practise with IVF whether NHS or not. It wouldnt make sense to simply discard them after all that work to get them (unless you've had your baby and don't want any more!). You may just have to pay a yearly storage fee.

@Marmite83 thank you that's all so helpful 🙏 I guess we will see what we can afford (we have no savings so this is gonna be a case of begging and borrowing from family! But we're lucky to at least have that option). Yeah my feeling is given I've been pregnant three times they won't want to do IVF, but then I have so much counting against me with the severe endo so who knows. I guess I'll find out in November and then we'll make some decisions about next steps.

Diet wise yeah that all makes sense. I think I might try gluten free. Dairy wise I have oat milk and coconut yog anyway (I used to be vegan), but cheese v much features in my diet which would be hard to kick as a veggie. But I can certainly cut down.

Thank you so so much for sharing all this 🙏

Hi @Tor88 no worries at all, I will try to answer some questions :)

So, in terms of my endo/surgery - diagnosed with stage 4 endo via lap March 2018 and was treated Jan 2019, had a miscarriage at 9 weeks in between. My endo was/is unusual I think though - I don't actually have ovarian endometriosis, it was all in my pouch of Douglas and around my ureter - the reason for the surgery in the end was actually mainly for compromised kidney function (though I was only concerned about fertility). I also had a lot of adhesions (e.g. ovary stuck to pelvic wall, uterus stuck to bladder) which they attempted to divide. They found a small fibroid which they left alone. My AMH was around 25 I think, but only really 1 ovary working and accessible.

How has your endo been diagnosed? I completely understand the reluctance to operate as as Marmite says, it can definitely have an effect on reserve BUT (and I am by no means an expert in this) there is research to suggest that untreated endo can lead to a toxic uterine environment - I'll try and find some of the studies I read and link them below. I think my endo may have affected my egg quality which may have contributed to the miscarriages. So, surgery may be worth considering in a year/2 years time if no further on.

I think in your position this is what I would do moving forward -

1. Look into recurrent miscarriage testing to exclude any other diagnoses
2. Consider taking high dose folic acid - GP can prescribe. Can possibly help with egg/sperm qualityissues.
3. Keep trying. I know...(and I hated people who said this to me at the time) but it IS positive you have fallen pregnant often and with relative ease - I suspect it really will be a matter of time for you, but no harm in trying supplements suggested in it starts with the egg whilst trying.

In terms of lifestyle I'm always reluctant to post this, especially on this board...but over the years (started TTC in 2016) I tried it all (diet, exercise, acupuncture, no alcohol, no caffeine etc and none of it made any difference). Between the TFMR in November and falling pregnant in Feb I did nothing (except the obvious!) I ate and drank what I wanted and we went on a big 'fuck it all' kind of holiday (cue eyeroll I know) and conceived then. Our son was then conceived in all honesty accidentally (truly not supposed to be insensitive, just the truth).

I do believe though that healing from the surgery and the long down regulation protocol for IVF plus the pregnancy helped prep my insides for a better environment.

My gut feeling is that provided nothing else is found (and even then most things can be addressed) you will be successful-the most encouraging thing is that you do get pregnant and therefore hopefully just a matter of time. I think if I could go back I would still try the lifestyle things because it gave me a feeling of control and purpose, but knowing that ultimately medical intervention and time were the biggest factors in our success.

Please feel free to continue to post if it helps :) xx

How is everyone getting on in this thread? I've just been diagnosed with endo after two natural miscarriages and now going through ivf at 37 with low amh and afc. It's not getting off to the best of starts and I am looking for some reassurances that everything can / will work out xxx

Hi @LAURAPAX . I now have my two dd and have moved on from ttc, but I didn't want to just read and not reply, as I remember the torment well. I had private IVF when I was 36. I have stage 3 endo and polycystic ovaries. My AMH was good for my age but that's likely because of the PCOS, and as a result, most of my eggs were likely not the best quality. After one round of IVF, we ended up with 4 viable embryos that made it to 5 day blast. I fell pregnant from my first fresh transfer but miscarried at 8+5. I then fell pregnant after my first FET and that's my, now 3 year old dd. I was 37 when I had her. I know our situations are different, but I just wanted to say, please don't give up hope. Viable pregnancy at 37 is perfectly possible and as long as your AMH isn't zero, there's no reason to think it won't work for you. Good luck!

I'm sorry for your losses @LAURAPAX ❤️ sadly we're still ttc our first. I've had more losses and done ivf. We do now have a diagnosis of an overactive immune system but the treatment didn't work in my last pregnancy. We're gearing up to a final try at ivf, I'm 40 now and multiple losses has taken its toll, so after this we're stopping.

My first round of ivf I was 37, low amh but got 3 top quality blasts which resulted in 2 pregnancies, so there is definitely hope for you. When do you start ivf? X

Ps, I only had 3 eggs fertilise from 7 eggs, but all 3 made day 5 blasts so don't panic about low numbers x