Secondary infertility and recurrent miscarriage - what would you do next?

[rosesallyear]

I'm normally a silent lurker type on these threads but I feel so lost at the moment that I wanted to share my experience and ask for fresh perspectives. Am on a mental hamster wheel going round and round, can't sleep!

I'm 38, average AMH (having it checked again on the NHS soon as last test was in 2022). I was lucky enough to have a daughter in 2019 - it took us about ten months to conceive and then I had a straightforward pregnancy followed by an emergency c section (was unlucky and got a sickness bug and she became distressed). My daughter is now the most amazing six year old and I know I am incredibly lucky to have her.

When she was about to turn two, we decided to start TTC. Sadly in the four (longgggg) years since then, I've had five miscarriages.
-The first quite quickly after we started trying in spring 2021, at eleven weeks, but the baby stopped developing at seven. Was devastating and a total shock.
-The second a few months after that in autumn 2021, a v early loss (about five weeks).
-2022 - not pregnant at all. Then spring 2023 I got pregnant. Really thought this was the one as I felt sick and super pregnant. Avoided all smelly bins etc. Booked an early scan at 8.5 weeks and found out the baby had died maybe the day before we were scanned, as they were measuring bang on where they should have been, but no heartbeat. This one was just awful.
-I think fourth was 2023 (after a while you start to deliberately forget dates) - early chemical again.
-A few months after that, we went for a round of IVF. I live in Devon so there's only one clinic really which is local to us, and we went with them. We got six eggs, only one good quality grade five blastocyst, and that didn't work.
-2024: Another round of IVF. Nine eggs, three decent quality embryos. The first (fresh) didn't take. The second (FET) ended in a chemical (miscarriage #5) about a month ago. The third is still in the freezer.

I've had all the standard RM tests through the Derriford RM clinic and all came back normal. We had the third loss tested and there was a chromosomal abnormality which made it incompatible with life. My DH and I went for karyotyping which came back normal.

I am feeling very unsure about what to do next. I think my options are:

1. One more fresh cycle with the local clinic but this time with PGTA testing, which we haven't had before. Pros: Much more straightforward logistically to manage with my six year old. They are lovely and friendly. Cons: I feel sometimes like they are behind other clinics - eg I've really had to push them on PGTA testing, which I would definitely insist on doing with my next round given my age and history, and which they make sound like a massive faff and quite unusual (and I don't think it is unusual in other clinics?!?!). Looking at HFEA data their outcomes are much poorer than the top London clinics. Which leads me to...
2. IVF at a London clinic. It would be expensive to get there, treatment would be more expensive and a big logistical juggle but we would make it work. But which one? It's overwhelming. Was looking at somewhere like ARGC because they do all the natural killer stuff (which my clinic down here has strongly steered me away from given HFEA advice) and are generally v knowledgeable about recurrent miscarriage in a way I feel my current clinic isn't. And for sure do PGTA there too.
3. Go and see Dr Shehata? Pros: He seems to be a bit of a fertility legend and I have read so many threads on here where all the women under his care seem to get pregnant, and they have similar histories to mine. Cons: Again it would be a massive logistical juggle. My clinic strongly steered me away from natural killer cell treatment and said the treatment can worsen outcomes, not improve them. It seems there isn't much research on this but I am inclined to listen to women and the anecdotal evidence from other people in my situation - given the woeful lack of research about women's health and especially recurrent miscarriage. I do worry about side effects of all the drugs. Cost is an issue - we would make it work but at the expense of other things.
4. Accept I am very lucky to have one child and give up? I never expected to have an only child and I want her to have a sibling - I am v close to my sister and I wanted to give her this opportunity. But I worry we are missing her childhood being preoccupied with something we may never have.

Thank you very much if you have read this far down this rather long ramble - sorry. What option would you pick?! I feel at my age and in my situation I don't have time to waste and I am agonising about what path to take.

New clinic and a lot more tests. I probably would not transfer another embryo without having full extensive work up. I'm sorry for all your losses, that's very heartbreaking. It very well possibly be that the embryos are not good so would be a good idea to test them also. If your current clinic is not doing everything possible to help, then you have to be with a clinic who can cater to your personal needs and willing to try everything.

@Miraclemuma03 Thank you very much for your reply, I really appreciate your perspective and I think this is probably the route I'm leaning towards.

Have you considered getting a second medical opinion? From what I’ve read, clinics in Spain have a lot of experience with secondary infertility. These days, many of them offer online consultations, which makes things a bit easier.
Some Spanish clinics also work in partnership with clinics in the UK, so the whole process could be more manageable that way. I believe either the fertility clinics abroad team or fertilityroad might know which European clinics have UK partners—they’re both great resources to reach out to. Hope this helps. Good luck

Hi @rosesallyear so sorry to hear of all your losses, that's incredibly tough. It sounds like a London clinic would be challenging but it sounds like somewhere bigger and a bit more on the ball could be really helpful. I am with the Lister in London and they've been excellent. Pgta is pretty standard testing, I've also done NK killer cell testing and am on meds for that foe embryo transfer. I've also had quite a lot of other testing done there, I don't have a history of recurrent miscarriage so I don't know what they do exactly to investigate but I think they are very thorough

Whether you move clinics or not pgta testing sounds like a good idea, so at least you would know you're not wasting time, money and emotional energy on an embryo that wouldn't work

Good luck!

@blacksnow @Orangewillow thank you both so much, I appreciate I have banged on for ages so your ideas much appreciated!!

@blacksnow overseas has v much been in my possible ideas list and you're right I should find out more.

@Orangewillow thank you, this is v interesting to hear feedback on another clinic! And again validation that my clinic is not doing the business.

Any comments from those on the Dr Shehata regime?

Can I add in another option that works for us?
Go and see Prof Brosens in Coventry (google the clinic)

We had 6 recurrent mc in a row then a successful pregnancy after treatment plan from him

Thank you so much @Cariadxx I really appreciate it. Haven't heard of Prof Brosens - think from a Google he may work with Prof Quenby? Coincidentally I asked my GP for a referral to Coventry a couple of weeks ago. Radio silence so far. Suspect they have given up on me as lost cause. This has given me the impetus to give them another prod!

Yes i think Prof Quenby is the NHS person but prof Brosens is more the research arm so self funded. You just phone up and book an appointment from memory and he goes from there. I think officially it is called patient funded research as there's no drug companies ploughing money into recurrent mc

@Cariadxx Thank you so much. Going to try this. Really appreciate it.

I would definitely do PGT-A and hysteroscopy for biopsy of the uterine environment before next implantation.

Thank you!

Hi @Cariadxx Jumping into this thread as I have suspected "super fertility" and have had three miscarriages so far. None of our doctors seem to be tailoring their advice to this specific issue which is frustrating. We keep getting stock standard answers from them.
Prof Brosens published the initial research into it and I wonder if we should be speaking to him. Are you able to share anything about the treatment plan he gave you - and did you have to go to Coventry to see him?

If you search his name on here there's a whole thread about his work. But yes we had an initial Zoom appointment with him then went to Coventry for bloods and uterine biopsy, after which we had another zoom appointment for results and plan based on results.

Following as I'm in a very similar situation, except I am older, at 42. I have a six-year-old and six naturally conceived miscarriages in the last seven years. Thinking of switching to ARGC or Avenues in London from my Spanish clinic, where I had 9 eggs retrieved, 8 mature, 7 fertilised and only 1 blast.

I have also seen Dr Shehata and had all his tests, and can recommend him for the immune side... It's just that getting a decent quality egg is an issue at our age. Sending you lots of warm wishes, @rosesallyear, no matter what you decide to do.

Thanks so much @TammyinCork, let us know what you end up deciding to do. So sorry about all your losses. It is a brutal road.

For anyone else following - just by way of update, I was referred on the NHS to the recurrent miscarriage clinic in Coventry and spoke to Prof Quenby, who was warm and lovely. She said though that the only thing she could recommend to someone with my history was progesterone from the point of a positive pregnancy test as that's the only thing medically proven to work. I'm staying on her books in case I get preg again in future.

After five years of TTC and recurrent loss, I've decided to try my best to make peace with having one child. I could go to another clinic and I know the London ones are amazing, but given my location in the country and the fact I have a six yo, it would be tricky to juggle the logistics.

We're not using contraception, so I suppose it's possible I may conceive again, but given my age now (39) and history I feel like it's unlikely. It's getting easier to accept with time, but it still hurts of course.

Sending love to anyone else on this journey xx