What to expect with recurrent miscarriage / infertility testing

[Jessem1]

Hello,

A few weeks ago I had my third miscarriage in a row trying for our first baby. I have now been referred for testing for recurrent miscarriages / infertility as it also took a year between each miscarriage to fall pregnant. I just wondered if anyone had been through similar and could give me an idea of what to expect? How long roughly did it take after referral was made until then actually having your appointment and what sort or testing should I be expecting? I know some people end up going private for the testing as the wait is so long but this can be expensive, so I am just trying to weigh up all my options and would appreciate any first hand experience.

Thank you

I'm sorry for your losses @Jessem1 ❤️

I was referred to infertility first as we struggled to concieve in the first year. The referral took 4 months, but I actually did conceive on cycle 16 but then had a mmc. So we continued with the pathway. I had a scan and hsg (dye in tubes) test - waited about 8 weeks for these. I concieved quickly after and had another mmc, so I was referred for a hysteroscopy (camera in uterus) under general, waited 3 months for that. At that time I was referred to the recurrent miscarriage clinic (separate from infertility) and that took 4 months but I rid get an earlier cancellation, pre-covid. They took bloods and tested for Antiphospholipid syndrome, lupus anticoagulant, thyroid, Factor V Leiden and a couple of others. The bloods take about 8 weeks to come back but my follow up appointment was 4 months later to discuss the results, which were all normal. I had a chemical pregnancy while I was waiting for my review appointment. As my investigations were normal the recurrent miscarriage clinic said I could have early scans in my next pregnancy but offered no treatment.

We were referred for ivf by the infertility clinic and that was due to start in September but I concieved after my first scan with them and had another mmc.

So we are at the point of private testing now, partly because the nhs have found nothing and I feel ivf will work in that I'll get pregnant but I will miscarry. Private testing is expensive but quick - my results were back in 2 weeks and I have a reason for my losses, aggressive nk cells, so I'm on a treatment plan now.

I hope you're not waiting too long for the recurrent tests - checking for the antiphospholipid and lupus anticoagulant is the first port of call as if you have this there is a protocol to follow. My experience with the nhs is if you don't have this, they just tell you to keep going and one day you'll get there, they hope.

Best wishes x

Hi @VenusStarr,

Thank you so much for taking the time to respond with your experience, I don't know anyone who has been through similar, so I really appreciate you sharing and I'm so sorry for your losses 💜 I am glad you were able to get some answers and found a treatment plan.

I am finding it very difficult to decide what to do. My last pregnancy / miscarriage was not handled well by the hospital on multiple occasions so have to say I am not feeling very confident going into this next stage of our fertility journey with them.

I don't currently have the money for the private tests so would have to save, but I am wondering if even factoring in some time to save money that this may still be quicker than waiting for referrals and multiple tests on the NHS, especially with Covid slowing services down even further.

I also have similar feelings of IVF for myself and am scared that I would have another miscarriage, and have never seen myself going down that route for some reason. Also I have always thought that one day I would adopt, even before having trouble conceiving so am not sure whether to pursue this route now if I am going to always struggle with keeping pregnancies to term as I don't know how many more times I have in me to get my hopes up for the worst to always happen..

Anyway sorry for the long ramble 😂 but again I really appreciate you taking the time to share your story to help me get an idea of what is in store, it's been really helpful thank you x

Hi there , I’ve had one cp and three mmc at 8-9 weeks after heartbeats.
I ended up going private as it seemed it would take a long time to even get my referral started with covid going on. Having said that , if you list out exactly what tests you want , you may find your GP can arrange a blood test to do them, or most of them , rather than go through the hospital route . Mine was lovely and agreed to do nearly all of them. ( there’s a list on zita west website of what they test for which is a good guide) . I went private because I was starting ivf and was able to get private within a week ( have insurance)
The results were all normal except slightly under on protein c involved in clotting . However , I was on enough meds in my last Failed pregnancy to have covered this . I reckon mine is chromosome /age related. I also had nk cell testing and pretty normal there too.
Unfortunately, results often come back normal it seems . You kind of want something to be wrong to be able to think next time will be different with treatment.
I’ve decided to do ivf to try and pgs test to find a normal embryo . I can’t do any more mmc as it’s so hard isn’t it .
Definitely , get the tests done and hopefully something will show up that is easily fixed 🤞

Hi @Sunshinelove8

Thank you so much for taking the time to message. I am really sorry for all the pain you've been through.

Thank you so much for the advice about the blood tests, I had never thought of this so will definitely see if I can request something same! I will be able to contact my doctors to check on the referral times later this week, though I'm not feeling optimistic, so will definitely try to push for testing through them.

That's how I feel too, I almost wish that they find something wrong so at least there is something to work on or give a definitive answer to things. It's so hard being in no man's land with it all.

Thanks again for your message and tips! I hope things go well with your PGS and IVF ✨✨