Hope you are all well.
I have a long and painful medical history which I will put in below but not in too much detail. Feel free to ask questions - I am not shy about sharing! I apologise in advance for the long and rambling post.
2009 - had a partial hysterectomy, left ovaries took everything else. Long history of heavy painful periods. It went horribly wrong, my bladder and womb were adhered to the inside of my stomach so when the surgeon cut he went right through the lot! Basically had my bladder re-built! A few weeks later I went to my gp, saw a locum, and complained of breathlessness and chest pain. Don't remember what my sats were but I was dismissed as being unfit and sent home.
2010 - had meds for a trapped nerve in my back and started bleeding a lot from my back passage. Long story short eventually got diagnosed with Ulcerative Colitis. Was med resistant and ended up having my colon removed early 2012.
A few weeks later I woke up with breathlessness and chest pain. Long story short went to hospital had a scan and was found to have a huge pulmonary embolism. Right lung was 50% full and the left was 70%. It was a tough few weeks as I wasn't allowed to even get out of bed and pee on my own!
Was on warfarin for 6 months and all was hunky dory.
I then had a spontaneous p.e Christmas day 2012. Back on warfarin.
Then followed a series of p.e's on warfarin, heparin and even on both! Then the dvts started.
To date I have had 8 p.e's and 4 dvts. I now have an umbrella filter in my aorta which catches the clots. This was put in Feb 2014 after p.e number 8. Am on rivaroxaban 15mg twice a day.
Not had another p.e to date but the last p.e I had is not dissipating as fast as it should.
I still get dvts but nothing stops them.
Went to my gp today because I have been feeling exhausted regardless of how much I sleep, dizzy, headache that won't go, dizzy head, keep forgetting things, muscle cramps among other things.
He mentioned Hughes Syndrome and said he wanted me to get tested for the antibodies for it.
He also thinks I might have do the lupus and/or m.e/chronic fatigue syndrome.
I am at a loss as to what to think because I have been under a haematologist since mid 2013 and not once has he even said this. He seems very reluctant to test me for anything to give me a diagnosis and it is a bone of contention between us to be honest.
He says that it won't change my treatment but I would like to know! We have agreed to disagree on this.
Is there anything I can do to ease my symptoms? My gp gave me so co-dydramol to see if that helps with the pain.
Many thanks for reading this. I am so sorry it went on for so long! Once I get started I can't stop!