Advice for next steps post recurrent miscarriages

[JennyJen3]

Hi all. I’m after some advice about what to do next. It’s long so bear with me.

I have had 2 x chemical pregnancies last year (natural) 1 x miscarriage (IVF)

IVF - AFC 12. Had planned to PGTA test all embryos due to history of miscarrying so early. Only managed to get 6 embryos, 2 made it to day 3 but by day 5, I got a 1 x 3BB which I decided to just transfer fresh in the end. Day 6 was 1 x 3CC but the clinic discarded.

Ended in miscarriage at 9 weeks. D&C at 10 weeks. Absolutely broken physically and mentally from it!

Tissue was tested, results were triploidy so abnormal chromosomes. So in hindsight I should have stuck with my original plan and tested as it would have picked this up and I’d never have had to have gone the trauma of a miscarriage.

I’m too scared to try again naturally and definitely want to test anything I get though I know this won’t rule out miscarriages completely but eliminates some things at least!

My 1st question - if anyone has had recurrent miscarriages, how did you mentally persevere with trying naturally and not just go back to ivf in the hope to test the embryos?

In my head the most logical thing to do based on age (40) and AFC (12) and AMH (12.6pmol) and history of only getting 1 embryo, I need to bank as many embryos as I can to test them all, which means a few cycles of ivf (realising how extortionate it is when you’re no longer funded by nhs!)

However I’ve also looked into a well known dr (Epsom) and his theories on NK cells attacking our bodies that causes recurrent miscarriages rather than it being blamed on egg quality or age! He essentially looks into immune protocols and I appreciate that people either believe it or they don’t but having read 100s of stories about him (the good and the bad) I wonder if I should just get this done too. Maybe I’m just clinging onto all his success stories esp in women 40+ as I’m so desperate to have my first child! In my case it may just be my egg quality though based on miscarriage test results BUT it may also be my body attacking cells based on my first 2 chemicals (which we’ll never know as I didn’t get to test them)

So my 2nd question is what do you think? Age isn’t on my side as I keep getting told….so know I need to get going with a decision.

I did ask my gp to refer me to his nhs clinic but that apt isn’t until mid June….however it would probably save me over £3-4k on blood tests alone as his private clinic charges this! I can get an apt with his private clinic in 2 weeks. And from what was discussed with his team (who are incredibly responsive) said if test results deem necessary then his immune protocol treatment would be put in place 2 months prior to egg transfer!

My 3rd and final question, has anyone used this Dr (in Epsom) that I’m referring to via nhs? I’m not sure we can name names so keeping it vague… If so, what was covered by the nhs. I’m wondering whether to wait till June or pay to go privately in 2 weeks. As I said before, the costs for initial blood tests can be £3k, (pretty sure he won’t take previous testing done elsewhere!) and meds can add up to a few grand too. I haven’t even started adding the costs required to do multiple rounds of IVF that I need to bank embryos yet either (circa £40k)

Thank you for reading and any advice would be incredibly appreciated.

[Kel8018580]

Hi

I have no experience of the IVF route as I chose not to go down that route. I have had 6 miscarriages. 4 of those chemical. Most recent few weeks ago. Went NHS however took so long to get appt that by time got there basically told to old - AMH too low (<0.5) FSH too high, thin womb lining etc this is cause of recurring miscarriages. I haven’t given up but if it’s going to happen then it will only take one good egg ivf or not.

Your AMH looks better than mine for 40s though

Re the bacteria, there is some talk about this and different drs will have different theories. Do you take a probiotic now? It may be worth just adding that in anyway.

Can you look elsewhere for those type of blood tests seems quite a lot for blood tests alone. I can’t tell you what to do as it’s your dream but where does it stop.

You could do all that and find that it doesn’t help. I’m cautious of someone who refuses any other blood tests from elsewhere which may disprove his theory

I probably haven’t helped in any way but just wanted to wish you luck whatever you choose to do.

[Emsk14]

Hello, I’m so sorry to hear of all you have been through, it’s so incredibly tough and unfair.

I’m with this clinic/Dr, and he’s amazing, he really cares about his patients-genuinely. And the clinic/other staff are incredible too.

We’re paying privately as we have a daughter and have been trying for our second. We can’t try naturally as I have no fallopian tubes, so can’t shed any light on that side I’m afraid.

My NK testing was around £1k. We had previously been at another clinic but moved, after going round in circles with them, so he did take some of our previous tests, but it depends on the time frame of some of them as I know some tests need repeating every 3 months. I found I had some NK cells raised, however it wasn’t enough to make me want to do the protocol for it. I have also had some other issues (fluid in the uterus) so wanted to address that more in our first round with them. We’ve just done our first FET and unfortunately it ended in a chemical pregnancy. But at our other clinic we never even had implantation in 4 rounds with them so we’ve made progress for sure in things he’s already tried. Need to decide if I do go through the protocol for treating raised NK cells in the next round or not.

He’s very open and honest around the lack of evidence with NK testing, and I have done endless reading too! He said that’s it’s so hard to prove if it’s worked as the only way you could tell is by testing on a pregnant woman/embryo, which of course you can’t do!

As an option could you maybe have an initial consultation with him and then if you decide you’d still like to go with him/the clinic then wait until June for the NHS appointment? (Not sure how/if that would work though, but just a thought) I suppose it’s hard to know what tests he’d recommend until you’ve met with him.

Our initial consultation was probably the most insightful meeting I’ve ever had with a fertility Dr. We came out of it with me information and hope that we’d had in 2 years with our previous clinic. And although they offer a lot, you are never, ever put under pressure to do what they suggest. Everything is still completely in your court, your decision ultimately.

Not sure if that’s helpful at all, but please feel free to PM me if you have any further questions! Best of luck with everything x

[Kilk22]

hello, firstly i hope ur ok, it's an awful time you are going through, I can feel your desperation and worry in your message. I have to only presume that the sperm has been thoroughly tested since there is no mention of it whatsoever in your message? Dna fragmentation etc?

[RekaV]

hi Jenny, I had 3 miscarriages and a chemical ( all natural) before we started IVF.my AMH was 5.6pmol at the time ( I was 38 and I’m 40 now) and my FSH11.7. I did short protocols on 375iu pergoveris and later another drug. I had 3 collections with PGTA testing and a failed one (the latter was my attempt at a natural protocol but didn’t work for me). I had a very poor response , 1st collection 2 eggs one blastocyst but was abnormal, 2nd collection 3 eggs 2 blastocyst 1 euploid the other was discarded, 3rd collection 9eggs 3 blastocyst 1 mosaic. I also had my NK tested and for the embryo transfer I was recommended the usual steroids and intralipids but I declined these. We transferred my only euploid embryo and I’m currently 35 weeks pregnant. (We used embryo glue as well) - we got very lucky.

We did all treatments in Prague and it costs us around £15-18k including 3 collections, medications, flights and accommodation so all in we found it much cheaper than in the UK.

Both me and my husband was taking supplements for 3 months before embryo transfer ( he had DNA fragmentation but significantly improved with supplements) and we did ICSI for all 3 collections.

I really feel your pain but I hope my story gives you a bit of hope- please feel free to message me if you have any questions. X

[Twiglet2]

The only thing I would add to what has already been said is that what you e mentioned about needing lots of embryos to test maybe isn’t the case. I didn’t PGTA test as like you only had one or 2 embryos per IVF cycle. Had a few chemicals early miscarriages and a loss at 9/10 weeks after a fresh transfer. The next egg collection I got 2 embryos one fresh was a BFN and then the next frozen was my son. Had I tested I would only have had one normal embryo to transfer but that one embryo has been enough. Even though I had loads that obviously weren’t right and did implant it really only does take finding that one embryo. I’m 42 so it is likely an age thing for egg quality that was causing my miscarriages but I did up my coq10 dose to 600mg that round which may have helped.

I took clexane and extra Lubion as a precaution in case it had sticky blood or low progesterone rather than having the tests (saved me time and money) no other tests were really that relevant as I had implantation happening (like you) I did add a vaginal and oral probiotic myself though too.

I just wanted to say there is defo lots of hope for you and understand the need to test to try and avoid the misscarriage heartache but the past doesn’t mean that the next round won’t bring you a wee miracle embryo from my experience. I also found success in a FET over fresh (was the same with my first son too) so freezing and testing and transferring via FET sometimes works for some people better as well giving the body a chance to heal and prep.

Best of luck to you in your next steps xx 🫶🏻✨

[Betty2025]

Yes here is my story so Ex partner got pregnant lost baby at 8 weeks mmc 12 week scan but my body literally started to miscarry a day after the scan!!

Fast forward to my partner I am with today we have had 4 miscarriages all very early 6 weeks or less… 1 chemical got referred to hospital for recurrent miscarriage they tested me and said nothing was wrong apart from a slight bicorneate uterus which to me didn’t seem right anyway went back to my dr and I got a referral to st Mary’s tommys in London who did all the tests blood clotting etc all normal but they did a laparoscopy and found I had a septate uterus which was quite bad she said I wouldn’t of sustained a pregnancy so I had two surgeries to correct and then my uterus was the shape it should be

Told to get pregnant and all should be ok but then for some reason I couldn’t get pregnant which was odd as before hand I never had issues fast forward a bit later and I was diagnosed with endometriosis so I’ve recently had surgery to sort that too just had my first I round of ivf and im 10 weeks pregnant everything so far is all good with the baby alert from I have a haemorrhage common in ivf mega stressful sometimes I just wish my body would give me a break !! I strongly believe that finding that issue with my uterus has helped though the blood couldn’t flow through my uterus properly and baby couldn’t implant correctly !! I’ve got my 12 week scan in 2 weeks praying that this is my rainbow baby!! Defo ask your doctor to be referred to tommys clinics x

[LovetoZumba]

hi Jenny. You have an amazing egg reserve and still young at 40 so you shouldn’t panic. I would take time out three months to prime your body. The issue by the sounds of it is chromosome so why spend on NK cell at this stage. Egg and Sperm quality can only be made by you and partner. your next step should be focus on 1 round of IVF and test BUT take time to prime your body, stop rushing and making fear based decisions. Are you eating properly? Have you had nutrient status tested? Are you taking good quality supplements and not crappy cheap ones? Are you exercising and using toxin free products in home , skin, water etc? Do you have any other health issues / inflammation. I reckon three months of good lifestyle you will achieve excellent embryos. Try gluten free or less gluten for a few months plus good exercise. Also hubbies sperm is important. Good luck