Have decided to start recording and writing my struggle either to look for positive stories or help others if I am successful.

[Hopingforababy]

Hi everyone,

I shared a bit of my story a few months back, then left the site (due to severe health anxiety) and have now rejoined and generally feeling stronger. My story is as follows. My husband and I had been trying for a baby for 3 years - I am overweight and put it down to that (as did my doctor) I have since lost some weight and intend to continue to do so until I reach a normal BMI. I had been having some bad bouts of PMT so one month I took oil of evening primrose (little did I know it acts as a mild anticoagulant.) that month, three years later I fell pregnant. I was told to take baby aspirin as it was discovered I was expecting identical twins. The day I took this I had a bad bleed and was told a blood clot next to the pregnancy bled out. Touch and go. Pregnancy continued uneventfully until sadly I lost the twins at 30 weeks. The subsequent investigations revealed a blood clot in the placenta and I had mild lupus anticoagulant. I had stopped the aspirin and had been put on heparin during the pregnancy due to my weight and the fact it was twins. Now I know I need both as aspirin crosses the placenta and I have this sticky blood.

I was told to take baby aspirin every day from now on as a precaution as this APS so far has not really affected me in every day life. So out of what it would seem like nowhere I have had two more pregnancies (I'm guessing due to the aspirin) in the last 6 months. The first one I miscarried at 8 weeks despite aspirin and heparin but the pregnancy had not developed and was told probably a genetic thing. Then this month I had another positive to then have it end at just 5 weeks. It's so heartbreaking to have so many hopes dashed. So we have decided to see Dr Raj Rai privately at St.Mary's for further advice. Has anyone had a successful pregnancy despite so many losses?

We are pretty certain this condition runs on my maternal side of the family due to my Grandmother only having one tiny baby at full term and having Graves.

I'm not going to give up but it really is devastating. I had post natal depression following the twins and became paranoid about health. As I said I'm now much better and ready to face this condition. Any advice/stories would be gratefully received.

Thanks x

[MaryF Administrator]

Hi there, I am so very glad you have come back on and posted, I know it is hard, but you are far from alone, although I have not had the devastating losses you have had, (see my profile), many on here have. In fact I myself with two other members on here are about to get cracking on our own patient book on Seronegative Hughes Syndrome as it so frequently and ignorantly sidelined, with dangerous results. However my first question to you, is who is caring for you, do you have the right medical team, this is crucial for a successful outcome, please let us know in case we can help you with more detail... welcome back. Mary F x

[Hopingforababy]

Thanks Mary. I'm under Addenbrooke's in Cambridge and seeing a rheumatologist in November and now I've had this other negative outcome I'm going to be referred to a haematologist specialising in blood disorders in pregnancy. Plus the private appointment we have now arranged. Up to now I was told start heparin to add to the existing aspirin as soon as the test is positive. Which I have done. So far this hasn't worked. As I got so far with my first pregnancy this has given me hope. What angers me is that doctors don't seem to recognise APS as a cause of the inability to get pregnant in the first place. Not just recurrent miscarriage. When clearly this is why it took us so long to even get off the starting block. At least I'm now getting some glimmer of a new life! Xxx

[emmaj]

Could you maybe try 5mg high dosefolic acid-anyone who has possible problems with placentas should have this-you can get it on prescription-it was the one different thing i tried and it helped and i had a succesful outcome x

[Annslack]

So sorry to hear that you have had so much loss and heartbreak. I would look up Dr Khamashta in London. He runs a specialist clinic for pregnant women and I understand his success rate is high. He is also undoubtedly an expert in this field and really kind. I wish you alll the very best. Ann