The Miscarriage Prevention Journey begins…

For most people a positive pregnancy test is the start of a positive journey and quite rightly so.  There’s no reason for them to believe that things could go wrong and so they wait, however impatiently, the long 6 weeks (if they find out immediately they are late) until their booking in appointment comes around and they get to meet a midwife, hear a beautiful heartbeat and generally validate the pregnancy.

Sadly I’m not most people.  I have a 9 year old and was very lucky the first time around – in fact I now know all to well how lucky I am to have had the experience of one dream pregnancy, but I am no longer that person that can wait a week to see if the late period really is ‘something more than just a late period’.

I have friends and family that have quietly (and patronisingly I felt) questioned my patience when it comes to confirming a pregnancy. Suggested that perhaps I found out too early with my previous unsuccessful pregnancies and hey if I hadn’t I would be like many others that have early miscarriages all of the time but I would be none the wiser and wouldn’t that be nice!  Save a lot of heartache!

Ah isn’t that nice of them, thinking of me like that, saving me from my own (self induced?) drama!

Or not.

Much as I love them, these people have no idea what infertility does to a woman and even less so recurrent miscarriages and whilst I would never wish either on anyone, I still fail to comprehend people commenting in such a way about something so delicate without any experience and as such wish they could just walk a mile in my shoes.  The implication that I can somehow link my finding out early (and what is early anyway, a positive pregnancy test only shows when it’s supposed to!) about being pregnant to the level of upset caused when it fail is just ludicrous and I can tell you this: it doesn’t matter when you miscarry, it still hurts like hell.

A positive pregnancy test changes your future in an instant, no matter how cautious you are about forward planning, and a resulting miscarriage takes all of that away in a cruel manner, just as instantly and seemingly without reason.  Yes it gets worse the further you get along and I hope and pray I am spared such duress but there is no base to start from that doesn’t cause pain or upset and anyway, my finding out on day 28 or 35 makes a massive difference to my pregnancy’s success.  I can’t cross my fingers and hope all is going to be well because every day counts and every hour that passes that I’m not aware of a pregnancy is another hour against it being a viable one.  I need to know quickly so that I can take the correct medication to try and keep the pregnancy in place as soon as possible and even when I do there are no guarantees, sadly it’s just a roll of a dice between success and failure.

No one knows why I miscarry, not really and it is very common for a miscarrier to be told to simply keep trying a a result.  I’ve seen two doctors (one private, one NHS) since the miscarrying began and both tested and got different results for Natural Killer Cells, neither of them sure if the reading was high enough to cause the issue.  With the private doctor this was a very expensive shrug I can tell you!  Neither of them then went on to have any kind of lengthy conversations on what to do about it all either.    The treatment, and indeed the whole idea of Natural Killer Cells being ‘a thing’ seems still to be based on quite a lot of conjecture (although in the three years since I have been affected it is gaining a bigger following).  Sure there’s science and I’m sure trials of all sorts backing it up but given that in general Natural Killer Cells still aren’t acknowledged as ‘a thing’ across the NHS or even private fertility clinics, it’s not difficult to see how anything at all you’re told feels like a shot in the dark.

The private guy had a very expensive programme to follow but given that we were already seeing him for unexplained infertility, the idea of paying thousands to fall pregnant then the same to stay pregnant was too much for our budget at the time and anyway, we weren’t convinced we needed him or his treatment. Despite being under private guy for over a year we hadn’t fallen pregnant with his prescriptions of clomid or even after three attempts at IUI: all of our pregnancies (to this day) had instead been conceived naturally and completely randomly, all when we least expected it (he does however I think deserve some credit for the hysteroscopy procedure that I had – he recommended it for womb lining scarring and I started falling within months of having it after 6 years of not falling at all so if you have unexplained infertility look it up). So we disregarded starting private guy’s treatment and as the NHS only takes your plight seriously after 3 recurrent miscarriages, we decided we would let the dice roll and see what happened.

I’ll be honest: I didn’t think I would miscarry again after the first one, why would I?  I thought I had got horribly unlucky and so I dismissed the idea of ever needing any kind of anti miscarriage treatment and when we fell again 6 weeks after the first loss I just didn’t see another miscarriage coming.

Lightning doesn’t strike twice.

We couldn’t get that unlucky after having years of infertility could we?

Yes.

Yes, we could.

The second pregnancy went further (or so I thought) and the devastation I felt was as close to how bad I felt losing my mum at 19: yes, that bad.  I’ll never underestimate someone’s suffering at the hands of miscarriage again.  It took me to bed on and off for weeks, a heartbreaking depth of grief that sneaks up on you whenever it fancies, taking your breath and your sensibilities away. Dates rolled by that should have been important scans and milestones and the due date crushed me.  Every pregnancy announcement on Facebook had me recoiling as if being stabbed and I couldn’t face pregnant women or newborns at all (this affected my relationship with my best friend for a while and I horribly neglected two cousins too).  A recording of the heartbeat and a video of our little boy opening his scan picture from Father Christmas (he’d asked for a baby for mummy for Christmas to cheer me up after the first loss and the 2% chance of it happening again – see below – kind of had me thinking it was safe to tell him) was where I sought solace and I have to say I was in a terrible place for a while there.

So when we lost for the third time (which was much less traumatic, toughened to it as I was by then) and became eligible for an NHS specialist miscarriage clinic appointment I expected quite a lot of investigation to go on, loads of information to be given and a carefully constructed plan of action to follow.  I was sorely disappointed.  Now I’m not going to slate the NHS, no way, if you want that kind of talk find another blog.  I’m grateful every day for it but I have to say, being on the end of this seemingly underfunded and very common health issue whilst reading of gastro bands and boob jobs being given out for free, left, right and centre was pretty tough.   But I digress.

When I finally did get in front of a miscarriage doctor I was very surprised at how much of their approach seemed to be based on hope.  Sure they had cases of success but the general consensus seemed to be of a one size fits all treatment plan and those that get lucky, get lucky while the rest of us just need to keep going until we do.  Which isn’t particularly encouraging when you’re 40, have been trying for a baby for 8 years, have miscarriages stacking up and underlying unexplained fertility issues to boot.  I won’t lie I walked out of my appointment thinking I had no chance, but I took the list of over the counter drugs and the prescription and went off anyway, thinking you never know.

What should be noted is that my first two pregnancies got as far as a heartbeat scan only for the ‘baby’ to die off around 7 weeks.  With the first pregnancy I knew of the loss at 7 weeks but with the second I plodded along happily believing everything was ok until 10 weeks when a scan showed I had suffered a missed miscarriage weeks before, on Christmas Day in fact, after seeing the heartbeat on Christmas Eve.  During that Christmas Eve scan, where the radiographer told me my chances of miscarrying again were as low as 2% now a heartbeat had been seen, I remember feeling completely assured that everything was going to be ok.  During our second scan only a few weeks later there was no activity.  I can remember running to the toilet and crying at my reflection.  I genuinely couldn’t believe it and when I called my husband (who didn’t come because I told him it would be fine!) neither could he.  We just didn’t understand, it didn’t make sense and there was no one to give us any answers.  I was told it was just one of those things and how common it was.  The radiographer suggested aspirin to me as a way of avoiding future miscarriages, I had no idea why but I recall her face as she said it, even amongst all the tears, and I realised she had said that many times before.  Had I have received that advice after the first time around perhaps that second pregnancy would have been a success, I will never know but by miscarriages three, four and five something else was happening: I wasn’t even getting to week 6.

It turns out that between six and seven weeks  (approximately) a lot goes on, the key things seemingly being the heartbeat commencing and the hooking up of the placenta.  I won’t pretend to be a biology expert but the theory behind my miscarriages was leaning towards something called sticky blood – the blood supply to the placenta was being hampered enough in those early days to literally stop the tiny heart beating just as it had started.  All when it was going so well.

So I gave up, genuinely gave up, no more babies for me.  I stopped taking everything.  Even the vitamins. Stupid and self sabotage perhaps but I decided enough was enough and quite frankly it had taken up enough of my life (I have been actively trying for babies for 13 years including the journey for my 9 year old).  Hubby and I focused on our business, decided against any further investigations and made a commitment to revisit next year if I was up for it, which I didn’t see happening to be honest.  It was over for me and I was just grateful that my body had seemingly stopped falling pregnant, the decision having therefore been made for me.

And then on 5th October a little extra red line on a test told me there was hope.

It was a huge shock and I have covered this off in a previous blog but suffice it to say I didn’t believe in this pregnancy.  I went through the motions, emailed the miscarriage clinic, took instructions and of course did everything I could to give myself the best chance but I didn’t really think it would work out.  Not in a million years.  But it has so far and as such I want to share my treatment with you but only on the basis that I AM NOT A DOCTOR and you MUST NOT SELF MEDICATE.  By all means print this off and pitch up to your specialist to ask if you can be given a shot at this plan but don’t go off and randomly order shit drugs off of the internet, THEY CAN KILL YOU, don’t underestimate the unscrupulousness of those selling such junk.

My drugs list is:

  1. Daily Pregnacare Plus Vitamin
  2. 75mg Aspirin
  3. 25mg Prednisolone (steroid)
  4. 150mg Rantidine (settler for steroid)
  5. 2,000 iu Vitamin D
  6. 1,000mg Metformin (as a polycystic ovarian syndrome sufferer I have a higher risk of miscarriage without this, unless you also have pcos you will not need this).
  7. 400mg Cyclogest daily

I was given this list of drugs by my miscarriage clinic after miscarriage 3 and I commenced taking all of these items religiously as directed within an hour of my pregnancy tests from pregnancy 4.  I took items 1, 2, 5, 6 and 7 daily throughout my cycle, items 3 and 7 from ovulation and item 4 on a positive pregnancy test.  Despite this I still lost pregnancy 4 and 5.  With pregnancy 6 I did two things differently:

I doubled up on Cyclogest and I took 3,000 iu Vitamin D instead of 2,000 iu every couple of days for the first month.  Both of these changes were of my own volition having spoken to a friend who had a similar journey last year and now has a 6 month old baby (if my clinic reads this I might be told off).  I also occasionally doubled up on aspirin in the early days because of a friend of hers doing so by accident and getting success but I did this less often through fear it would do more harm than good.  Are these changes the critical success factor for my pregnancy so far?  Who knows.  Am I going to find out they caused issues later?  Who knows again, it was a risk I was willing to take given the evidence.

As I write this I am 11 weeks and 5 days pregnant and my blog is now likely to be all out of sync over the next week or so because I keep randomly thinking of things to share that might help someones journey, writing the title and the first few lines but never quite finishing it.  I apologise therefore if my next blog will leap back in time a bit but if I feel it is important enough to share with you I will!

My next milestone is the nuchal scan on Friday 2nd.  I’m both terrified and relieved it is here.  Keep everything crossed for me x

 

 

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