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Recurrent loss

11 replies

VJFord · 16/10/2023 17:04

Hi folks,

I am looking for any information or personal experience of what you did after multiple losses. I've experienced 3 consecutive losses at different gestations and I don't know where to turn.

I am currently 35. We had a MMC at 8 weeks in Jan 2022. Got pregnant again very quickly but in Sept 2022, at 28+6 I went to the hospital with RFM. Everything seemed okay at first but then very suddenly my baby's heart rate dropped. She was born via EMC as I experienced a placental abruption, but she sadly died in NICU a few days later. We had to wait until I had recovered from the C Section to try again, then in July of this we had another MMC at 7 weeks.

After my daughter died the placenta was tested and I had a suite of blood tests done. All results were normal.

My hospital has pretty much told me that they have done everything they can and we should just crack on with trying again. I can't help feeling that there must be more tests available.

No tissue was tested for chromosomal abnormalities when I experienced my most recent miscarriage, and my partner has never been tested for anything. I have spoken to my GP and asked for advice about where to be referred next but she had no idea which hospital(s) would specialise in this sort of thing.

We are considering going down the IVF route, just to access more testing. I am also waiting for an appointment with the Tommy's recurrent miscarriage clinic at St Mary's Hospital, but I think they will likely just offer me the same blood tests that have already been completed.

Does anyone have experience of unexplained recurrent loss? Where did you turn to and where did you find the support or additional testing that you needed?

Thanks for reading all of this.

OP posts:
Vic231 · 16/10/2023 19:36

Hi @VJFord I'm so sorry to read about your losses. I'm currently undergoing blood tests for recurrent loss. I have had a TFMR at 25 weeks last year where I gave birth to our little girl and so far this year I've had 2 early miscarriages at 5 weeks and 5+4. Sometimes I really struggle that this has all happened to us. I don't have any real updates as yet, but I wanted you to know that you are not alone ♥️ I would also be appreciative to hear others experiences x

VJFord · 16/10/2023 20:25

Hi @Vic231 , I'm sorry to read about your losses too. Sending you lots of love and I hope that maybe your blood tests will help to provide some clarity for next steps for your family. If you don't mind me asking, did you give your little girl a name?

OP posts:
Vic231 · 17/10/2023 11:20

@VJFord we did give her a name ♥️ I feel a bit funny posting what it is on here (I have no idea why, but I guess grief has no rhyme or reason!). Did you name your little girl? I'm so sorry what you've had to go through. I really hope we both have some good news soon x

moosey89 · 17/10/2023 16:45

I'm so sorry to hear about your losses. I had 2 MMCs at 10/11 weeks and a chemical, and went to my GP who did all the bloods she could tick on the system - apparently some say "consultant only" so I can't have those until after I've had the specialist miscarriage clinic appointment which is at the end of November, about a 4.5 month wait from when my GP put in the referral. They also did an internal ultrasound to check that nothing was visibly wrong that might cause my losses, and my other half has to do a semen analysis too. Apparently 30% of miscarriages can actually be attributed to sperm issues! So make sure your other half gets tested too.

Tweetingbirds · 18/10/2023 16:54

@VJFord so sorry to hear your story. I had recurrent early losses before a successful pregnancy so my background is a little different. I'm not an expert but I did a lot of research when dealing with my own fertility issues.

I agree with @moosey89 about looking into sperm quality- the comet test (for sperm dna fragmentation) is probably the most useful for your circumstances. If there are issues with your partners sperm the positive aspect is that they can often be improved relatively quickly as sperm is replenished every 3 months.

Another aspect you might consider is natural killer cells testing for yourself- just bear in mind that it's rather controversial and generally only available privately. High level of natural killer cells have been linked to early losses, I'm not entirely sure if there's a correlation with later losses though, so definitely check that before going through with testing.

Best of luck whatever route you decide to go down.

VJFord · 18/10/2023 16:56

Thank you @moosey89 and @Tweetingbirds. We've finally been able to push for some testing for my partner, however the earliest appointment he could get for sperm analysis was next January, so I am tempted to consider going private.

My consultant said I didn't need to be tested for natural killer cells because I managed to carry a pregnancy to 28 weeks, but again I am tempted to go private just to get that test done and rule it out.

OP posts:
Bbb2023 · 19/10/2023 13:02

Please don’t give up pushing for testing. We had 5 losses before having our miracle. It was the hardest time of my life and I am so thankful. We ended up being looked after by St Mary’s.

CC222 · 19/10/2023 14:27

I am so sorry for your losses. It's heartbreaking to experience...
I had 4 miscarriages before a successful pregnancy. My miscarriages were all early, two around 6/7 weeks and two around 12 weeks.
I was under the care of the recurrent miscarriage clinic at St Mary's and testing showed my blood clots too much which most likely caused the losses. When I next fell pregnant I was medicated initially under st Mary's care for aspirin, blood thinning injections and progesterone pessaries. (My GP would not have prescribed these for me without the clinics decision for me to be treated with these medications. My GP wouldn't even provide repeat prescriptions until I had a report from the clinic showing my care plan, so you really might be offered more help via the recurrent miscarriage clinic than you've received so far).
I know my experiences with loss are totally different to yours, but don't rule out any testing available to you, especially by the recurrent miscarriage clinic because what it means is that when you next fall pregnant, you will be under their care (you can contact them as soon as you get a positive pregnancy test result), and depending on your medical circumstances they may offer additional medical input such as medication, that your GP wouldn't necessarily be able to prescribe without the clinic first setting your medical pregnancy plan.
One thing to note with the clinic. They won't prescribe certain medications without an early scan verifying a valid pregnancy with heartbeat, but when I had to go there with my 5th pregnancy their wait times for an early scan meant I would be 11 weeks and I was worried to wait that long without medical intervention so I got my GP to refer me to the early pregnancy unit local to me (which they had to because of my history), and once they validated the pregnancy I updated the clinic with the medical proof so I could expedite the medications being issued and start on them at 7 weeks which I believe made a huge difference.
Don't give up hope, miracles do happen 💕

Tweetingbirds · 19/10/2023 14:30

@VJFord It's good to hear that you got some testing for your partner scheduled. If you're still keen to test for natural killer cells it might be worth speaking to a reproductive immunology specialist first (if the consultant you've seen already isn't one) as they would be able to advise whether to test or not and the tests can be quite expensive.

I meant to add you might also want to check if you have an mthfr mutation which is also linked to recurrent miscarriage.

VJFord · 19/10/2023 15:08

Thanks @Bbb2023 . We were meant to have an appointment at St Mary's earlier this month but it was cancelled because of the drs strikes and now we have to wait until December! I'm glad to hear you had a good experience with them, though.

@CC222 so glad to hear you got the support you needed a St Mary's too. It makes me feel a bit better about having to wait 2 more months to see them. I was tested for blood clotting disorders and show no evidence of those being present, but I was offered the heparin injections and advised to take paracetamol in my most recent pregnancy. I want to ask about progesterone though.

and thank you @Tweetingbirds for your suggestions. I'm going to look at how much these tests would cost if we went private and decide if that's worth doing or if I stick it out and wait until we see an NHS consultant at St Mary's.

OP posts:
Bbb2023 · 19/10/2023 16:08

I found that St Mary’s really seemed to care and look after us compared to our local hospital which was rubbish and seemed to have no up to date research on recurrent miscarriages. I’ve heard that this also helps outcomes…

All my tests came back as normal but they prescribed me progesterone and vitamin d all of which I was able to pick up whilst we were trying to get pregnant again so that we had it from the very start. They also didn’t really care about my husbands tests which we had to do elsewhere and showed he may have some fragmentation so he was taking a lot of vitamins but again they didn’t seem that bothered by it.

St Mary’s thought maybe I was hyper fertile and my body was accepting bad eggs whilst other peoples bodies would of rejected them. I think with us each pregnancy we had to hope that it was going to be a good egg and sperm. The only thing I did differently was take spirulina whilst we tried for our son who knows if it did anything.

I hate that we all have or are having to go through this and I really hope everything works out for you. I knew deep down that I could never give up trying. No one understands what it’s like to go through it unless they have experienced it first hand.

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