5 miscarriage & bad advice after BFP

[21RsMama]

Hello, I know in all honesty, like everyone including myself says.. 'time will tell' however I'm hoping someone has been in a position like this and can help me.

I've had 5 losses now ranging from 5 weeks to 13 weeks. I had a chemical just over a month ago and I have managed to get pregnant this cycle. I've been testing positive from 8dpo until 13dpo however today's test was a bit lighter than yesterday's. I called the EPU to ask if they can check any hormone levels etc to see if something is low and I can supplement going forward, not to 'save' this pregnancy but to know if I can help in future (at this point I hadn't mentioned I'm already on progesterone, so I thought she would suggest this). The nurse said no we can't do that you just need to retest in 1-2 weeks and if it's a strong positive you will know your pregnant. I just feel like that's not very good advice? If it was a one off MC yes, for most people it won't happen again but I've had lots of miscarriages now, so for one I know a strong postive doesn't mean a baby.

Has anyone had a similar experience or can suggest what next steps to take? I really am so broken after so many loses, particularly the 13wk one which I held I'm my hands after a hospital procedure. I know maybe it's never going to happen but if I think there is a chance I can do something/take something to help and I haven't I'll be so disappointed.

(For note I was prev let down by the NHS in 2023 after repeatedly visiting the gp for very strong cramps and heavy bleeding which they said were just bad periods. I went private and they found cysts crushing both tubes which were then removed within 4 weeks. My faith in the system isn't high)

Hi, I'm so sorry you're going through this. I've had three miscarriages myself so understand to some extent. I also held one of mine, though it was earlier than yours. I'm thinking of you.

Have you had any investigations? Your GP should be able to refer you to a recurrent miscarriage clinic. Or you can self refer through Tommys (or ask your GP to refer you) to one of their clinics, which I'd recommend if you haven't already. I saw Prof Quenby in Coventry and whilst it hadn't solved my issues (I'm already under a fertility clinic as my pregnancies have all been ivf) she ordered loads of blood tests which I had done through my GP which could check everything out.

In my experience EPU really vary in how helpful they are and they're not that fussed if your early on. I've met some truly amazing drs throughout my treatment but the system as a whole is pretty crap when it comes to miscarriage care.

I am so sorry of what you're going through. There sounds like there's some problem - it really needs investigating. Are you or your partner RH negative? Do you take vitamin D?

So sorry for all your losses, you've really been through it, haven't you?

I've had a 6 week MC, a 9 week MMC, and a 19 week preterm labour resulting in the death of our little boy. Not the same as your experience, but I do understand about loss and anxiety.

It took until my little boy died for them to take me seriously, to be honest. Even during his pregnancy, when he was doing brilliant and was perfectly healthy, I flagged concerns about my own pain that were dismissed and I ended up in labour.

After 3 miscarriages, you're entitled to a referral to a recurrent miscarriage clinic. As the above posted kindly says, you can also self refer to Tommy's. Unfortunately, there is a very outdated and disgusting attitude in NHS policy that most pregnancies will be fine, so those are the ones to focus on, and those that are not it's just bad luck and nothing they can do. You have to push for everything, no one is going to offer things out easily in my experience.

Your GP can order tests to see if anything is going on hormonally, and your partner should be able to get sperm tests done too at this point. Lots of people pay for extra tests privately to cover all the bases, but until you have some kind of reasoning for things going wrong, I've found my EPU (and even the rest of maternity service) won't be proactive at all. It took the death of my son to say that next time they'll actually listen and offer assistance.

Oops, sorry hit send by accident. Last point:

I would call the EPU again and tell them this is your sixth pregnancy after five losses and you need to speak to someone about proactive treatment. Lots of EPUs won't do anything until 6 or 7 weeks to account for dating and progression - if they scan you and start medicine too early, they could be medicating and prolonging an ectopic pregnancy or a pregnancy of unknown location, so they like to wait until they're really certain the pregnancy should be visible and viable before doing anything. That doesn't mean they can't book you in for a few weeks time and put in the notes you need a recurrent miscarriage referral and progesterone or aspirin, depending on the discussion you have.

Wishing you all the best

That sounds so stressful, it does sound like bad advice.
My friend found out she was very early pregnant at her 1sr MC clinic appointment, after 3 previous MC.
They put her on high dose folic acid, progesterone and daily aspirin. She has factor V Leiden so the aspirin was because of that. The aspirin and folic acid is something you could try while you're waiting to be seen