As you may know, we are trying to conceive again after a break of a little over a year.
There are lots of reasons why it has ended up being such a long gap, among them how utterly broken we both felt after our fourth miscarriage, and the decision to plan a long-haul holiday for the first time in a while, but at the back of my mind, there was also an intention that we could use the time to explore other testing options and perhaps even some treatments, privately.
Here are some things I have considered investigating at some point over the past year: Tests for elevated levels of natural killer cells (either privately or at this self-funded research clinic, run by Professor Siobhan Quenby and Professor Jan Brosens) IVF with pre-implantation genetic screening, sperm DNA fragmentation testing and getting tested for coeliac disease (which if undiagnosed and untreated is known to cause recurrent miscarriages, though you don’t hear it discussed much).
Here are the things we’ve actually done:
Yes, that’s right, none of them. Not a one.
I don’t regret it, exactly, but I do sometimes to wonder what’s held me back. At one point, every spare minute I had was spent googling and researching possible ‘causes’ or things that might help us. But that desperate conviction that something had been missed by our NHS clinic seems to have burned away now. And what’s left is indecision. Analysis paralysis.
Mostly, I’m torn between whether we should take our prognosis at face value or whether we should take matters into our own hands.
When you’re told that there is no known reason for your miscarriages, rather than being reassured, the internal cacophony it creates is immense. Officially there may be no reason for your losses, but unofficially there all kinds of fledgling explanations that researchers and doctors are looking into, sometimes with tentative ‘worth a go?’ treatments to match.
Progesterone pessaries, aspirin, high dose folic acid in case it’s a MTHR gene problem… There are so many theories out there about what might help with recurrent miscarriage, but few solid, dependable answers about what will actually help with your recurrent miscarriages.
For a long time, I told myself the pressure to find an answer, to ‘cure’ myself, was coming from the outside world, from constantly being asked ‘have you tried… [insert dubious doctor or supplement here]?’
But if I’m completely honest with myself, no one is actually asking me these things. Or, at least, not often. Occasionally someone might ask about the testing process and what our NHS clinic at St Mary’s has told us, but that’s about it.
So I think I have to concede that this ‘have you tried…?’ pressure is largely self-imposed. It’s my own voice I’m hearing in my head. It’s me, nagging myself, driving myself mad with my drive to find answers, swiftly followed by confusion and inertia. I’ve done the reading. I know the options. But, like a computer with too many tabs open, something in me has frozen, refusing to take the next step.
And here’s where my brain goes next: does this mean I just don’t want it enough? A woman who really wanted to have a baby would have booked those appointments, wouldn’t she? She’d have parted with that cash. Stopped at nothing. Thrown caution, evidence and her last scrap of dignity to the wind.
That’s the singular, determined narrative we’re told around infertility and miscarriage, isn’t it? That’s what people who really want children do. (The sly sub-text here being that’s what people who really deserve children do).
I have such fear that I am letting myself – and Dan – down if I don’t get to the bottom of this, leaving no experimental treatment or test unturned. That I have squandered this time. That I’m setting us up for another failure.
And yet, in the same way that I’ve heard other people describe their conviction that they ‘just knew’ there was something wrong, there is some instinctual voice (firm, calm, a little bit bossy) deep down telling me that our diagnosis of just-bad-luck does, on some level, actually make sense. It has the ring of truth to me, now.
Exhibit A: At least one of our losses has been confirmed as being down to a random – not inherited – chromosomal error. Another, we were told, also looked likely to be down to a chromosomal error (although the karyotype tests we’d agreed to failed, so we didn’t get a definite answer either way).
Then there is the fact that we (thankfully, touch wood….) seem to conceive quickly – is this a clue that the ‘unfussy uterus’ theory applies in our case?
And if you accept that some miscarriages are random (and the consensus seems to be that they are), someone is going to have the misfortune of having several random miscarriages in a row. That’s just maths; basic rules of probability. (She says confidently, as someone who frequently gets her sums wrong in the supermarket…)
In the absence of proper evidence, so often in infertility and pregnancy loss the mentality when it comes to trying things out is: ‘it can’t hurt, can it?’. And while I understand that impulse (believe me, I’ve been there, done that, bought the over-priced folate pills), I’m also aware that it can be a false friend. For instance, I’ve been told by our consultant that taking a low-dose aspirin ‘just in case’ isn’t a good idea for me, as my various blood clotting profiles suggest it could actually raise the chance of miscarriage.
I also have a big ethical problem with doctors and clinics who promise miracles, who swear they know what works for recurrent miscarriage, without actually contributing to any research that would provide proper evidence so that those treatments could be made available as standard.
I’m confident I could find a private doctor who would prescribe me steroids, heparin and/or intra-lipid infusions, if I wanted (and could afford it). And yet…. I can’t shake my doubts. It’s a very powerful narrative, the tale that goes: ‘over-cautious mainstream doctors said there was nothing they could do, but then I found so-and-so who gave me this-and-that and now I have my miracle baby’. But if you scratch the surface, you’ll find just as many stories that prove these therapies aren’t a foolproof formula. (There’s a very good, balanced piece here on the subject of immunological treatments for infertility and miscarriage here, if you’re interested).
Please, please don’t misunderstand me and feel that I judge anyone who chooses the more experimental treatment route. I really don’t. I get it. And I’m not ruling it out for us just yet, either. But for all of the reasons I’ve listed, for us, intuitively the right thing to do seems to be to give it at least one more roll of the dice.
Although if and when we get pregnant again, I will at the very least be asking our clinic about progesterone supplements, following this new Tommy’s research. And I should probably get that coeliac test done, just to rule it out. (Incidentally, if you’ve been tempted by fertility diets that suggest cutting out gluten because it’s ‘inflammatory’ and feel like this chimes with you – that you feel better not eating bread and pasta etc – do consider ruling out a coeliac diagnosis first. There’s supposed to be half a million undiagnosed coeliacs in the UK currently and women who have recurrent miscarriages should be tested, even if there are no other symptoms, according to the NICE guidelines. There’s a helpful tool here that might indicate if you should see your GP for a blood test).
But really, this isn’t a post about what I’m trying or not trying, it’s about the importance (and difficulty) of cutting through the noise, finding a tune you can follow in amongst the background thrum of endless theories, that can be both a beacon and a torment.
Because even if you’re not trying anything different this time, you’re still trying. Whether you’re banging down the door of a reproductive immunologist or taking a break or prioritising psychological therapy and self-care over expensive vitamins and private tests… you’re still trying. We’re all just trying. And we’re all still deserving.
You may also like…
Three things no one tells you about trying to conceive
It’s a mine field out there! So many conflicting opinions, theories and research… You’re absolutely right, just do what feels right to you and filter out the rest of the noise. Xx
You are correct. There are so many different theories that it’s hard to figure out if they actually make sense, are safe, and are worth it for you! I think your attitude is great. Sometimes you just have to continue plugging along. Wishing you lots of luck.
Your latest blog couldn’t be more timely for us. My partner is a carrier of a genetic translocation and my NK cells aren’t helping either – our PgD tested normal blastocyst – with intralipids, clexane, aspirin, steroids and folates still only lasted 5 weeks. I just don’t know what more we could’ve done – or what less – anymore.