Hi, I’ve just discovered that I have Antiphospholipid Syndrome and was wondering if anyone else has had the same diagnosis?
It means that my blood is too thick to sustain a pregnancy, I’ve lost three babies, one was ectopic. But it’s only after three miscarriages that they’ll offer you a test for this.
I’ve been told that to offer everyone this blood test would overload the system, and that to get it done on the NHS you have to prove that you need to have it (by losing three babies).
I’m so angry and frustrated. We’ve been trying for seven years, three of those have been under my GP, followed by two under a fertility specialist. At no point did they even mention this test, despite the fact we told them repeatedly that we’d pay for any tests if it meant getting them sooner.
It feels like the last seven years have been a complete waste of time. We’ve been through so much and it feels like this could’ve been avoided by a blood test, and aspirin - which is all that’s needed to treat antiphospholipid syndrome.
I’m so, so angry. I’ve been told that my ectopic pregnancy was most likely due to this condition. So if I’d been tested earlier I might still have both Fallopian tubes. I’m now 44 and my chances of conceiving are so small, made worse by the fact I only have one tube. I feel really let down by the NHS. My GP told me that she’d do a set of tests (which all came back fine), and that we’d have a full picture of my fertility once these were done, but she didn’t do every test available. Nor did my fertility consultant, even though antiphospholipid syndrome can be the cause of conception issues.
And, now I feel like IVF if the only route open to me, but I don’t trust the system anymore, how can I know that they’ll do all they can when they’ve let me down so much already? At every turn something has gone wrong in some way. Small things like lost referrals, or test results. Being sent to the wrong place, given the wrong phone number to ring for appointments, answer machine messages not returned. To larger things like an early scan failing to pick up an ectopic pregnancy, and being left for 12 hours in hospital corridors with a ruptured ectopic pregnancy that nobody thought to scan for (they assumed I was ‘just’ miscarrying despite no bleeding and a closed cervix). To proper consent not being sought, to being lied to (which I can prove) about the identity of someone who disregarded my right to confidentiality. I’ve been given the run around when trying to address some of these issues.
I’m exhausted but I feel like I have to act now, my AMH is down to 12.9, when I started this journey it was 20.
Any help or advice would be so very much appreciated.
but I think having your complaint taken seriously is important for them so they can learn but also as part of emotionally healing - it’s natural to be angry at mistakes. I feel like I wasn’t warned (and still people like doctors don’t seem to know!) the morning after pill increases risk of ectopic. Now my Tube is potentially scarred and my brain certainly is.