Am very and . I understand doctors can't be experts on everything and partly this is my responsibility because I didn't take enough time to learn about the problem but FFS, you sort of have to trust your physicians on some level when they tell you something that they have actually checked the facts with someone who does understand these things.
I have an inherited factor ten (known as factor X) deficiency. The simplest explanation is that my blood doesn't clot properly. I discovered this when I was really young because I had really heavy periods (starting at age nine) and a geneticist was called in to look at my blood because it was 'funny' whenever they tested it.
So they told me I have this thing and that it was fine - that I'd probably need to take tranxemic acid and nefamic acid every time I had a period.
This is a one in a million thing - it's an inherited disorder, but no-one at the time thought to test my mum - despite the fact she'd had an emergency hysterectomy after massive bleeding during periods which left her with a blood count so low she was actually unable to stand up or function at all. She'd had the same symptoms for twenty years but the association wasn't made.
And no-one has thought to test my daughter. Luckily I'm still breastfeeding her at 18 months which increases her protection as long as I do but then she will need testing and if she has inherited the condition, it needs to be noted whenever she has surgery - even minor surgery and her periods may be an issue.
Worst still, it's associated with a form of haemophilia in boys. And I'm having a boy! Again breastfeeding him will provide good protection to start with - as will oral vitamin k at birth but I've had no related pregnancy care at all. They haven't done any clotting tests and I've only just (today) been referred to a consultant obstetrician who knows anything at all about it, who I am going to ask to refer me to a consultant haemotologist - which may entail a 100 mile trip because there aren't that many of them around.
Similarly I've discovered that every sodding thing they did during my DD's birth was contrary to advice for managing this problem - you don't give a caesarian or an epidural to a woman with a blood clotting disorder (if there is any other alternative - like for example, waiting a few hours to see if natural delivery is possible). In fact the only thing that probably prevented me bleeding out on the table was the fact that I was given so much syntocin (four bags full) my womb had contracted down so very hard so very frequently during my 14 hour labour preventing blood loss - I lost a pint but in the circumstances that's excellent.
My miscarriages were also badly managed - no-one realised I should have been given plasma, so it's no sodding wonder I ended up so very anaemic afterwards. Nor did anyone say 'oh well yes, of course you are more prone to miscarriages - you need regular blood tests to check you don't need plasma' .
And now I'm 25 weeks pregnant. And I'm expected to trust these folks with my care. I was planning a homebirth if everything is okay during the pregnancy - problem is, now I won't know if everything is okay because I don't know that the docs know how to test for this thing properly - they keep asking me what it is whenever I go to see them. I try and explain, they just look worried and refer me to (yet another consultant) who hasn't heard of it. .
On the positive side, I have managed to find myself a haematologist who works in this area and who has given me some info to put in my notes, but I'm just so frustrated that I'm either not going to be properly looked after or that I'm going to be treated like a ticking time bomb (I'm already a VBAC birth so apparently I'm liable to explode during labour ).
Oh and I'm actually pretty frightened of needles because every time I have a blood test I bleed for about an hour and get massive bruising - that's a symptom of the disease that no-one picked up on either
AARRRRRRRRRRRRGGGGHHHH