Antiphospholipid Syndrome Support Group
Antiphospholipid syndrome (or antiphospholipid antibody syndrome) is a disorder of coagulation which causes thrombosis in both arteries and veins, as well as recurrent miscarriage. It is due to the autoimmune production of antibodies against cell membrane constituents. A very rare form is the catastrophic antiphospholipid syndrome, in which there is rapid organ...
Hi all, I've been re-directed here from DVT support group.
Here's my story;
I have Endometriosis and I am getting HELL from it! I have had two surgeries this year and have been in agony since I was 9 years old.
I can't take ANY hormones because all I do is bleed, and get sick. On top of it some hormones cause clotting (which I do normally on my period (sorry if thats TMI)) and my mum is to afraid I will clot too.. so sometimes they take precautions if there is a high risk.
Now I had surgery (excision) in July...and I am back in agony again.. my endo is being vicious and my specalist OBGYN is trying to find out anything else associating to it could be causing it to be so harsh to me.
I go in for a colonoscopy on the 3rd. But I have asked my mum to get her blood tests again.
20 + years ago (I was born in 1990 and she found out before) she was told she has an anti body which causes her to miscarriage all through her pregnanacy not just her first trimester.. This happened to all her children but me and I only survived because I was a twin (or so they say). Back then they described it as the body trying to kill what it thought was a disease... however as mum got older she had terrible trouble clotting and found out she had DVT...about 5-6 years ago, I almost lost her as a blood clot was travelling to both her heart and brain she had emergency surgery. They have it (they think) under control.
Im not sure if any of you know of an anti- body that could do this? and/or be associated to endo? I clot severely on my period and I reject all hormones they are besides surgery the only things that can help me.
Mum doesn't know what her anti-body after she had me she didn't want anymore children (she was 37) so she forgot about it...both her doctors have retired or passed away and they can't get that far back into her medical files for one reaosn or another.. they did mention she couldn't access that info based on something she signed giving the professor all rights to it and therefore her records unable to be shown without his concent (which is hard if he isnt alive?? :S). At the time, in Australia there was only a couple of other women with this antibody (she said less than about 5)... (another reason why she can't remember the name)...her GP has given her a list of things it could be and I'm asking her to get those tests done...
Does anyone have any ideas?
An Anti-body that causes significant miscarriage (at any point in the pregnancy not just in the 1st trimester), clotting etc.. and could somehow be linked to endo? (But I suppose it doesn't HAVE to be).
I share some things in common with mum, we're both very cold hands and feet, abornomal pap smears... and I'm being sent for a colonoscopy to rule out a few things (mum had bad poylps/cancer in her early 30's almost losing her bowel function completely). To top it off I have a shocking immune system.
I know you all can't tell me what it is.. but it'd be nice if anyone had an idea...maybe it's something the GP wrote down for us both to be tested on??
Really appreciate responses!
Tatum :)
Here's my story;
I have Endometriosis and I am getting HELL from it! I have had two surgeries this year and have been in agony since I was 9 years old.
I can't take ANY hormones because all I do is bleed, and get sick. On top of it some hormones cause clotting (which I do normally on my period (sorry if thats TMI)) and my mum is to afraid I will clot too.. so sometimes they take precautions if there is a high risk.
Now I had surgery (excision) in July...and I am back in agony again.. my endo is being vicious and my specalist OBGYN is trying to find out anything else associating to it could be causing it to be so harsh to me.
I go in for a colonoscopy on the 3rd. But I have asked my mum to get her blood tests again.
20 + years ago (I was born in 1990 and she found out before) she was told she has an anti body which causes her to miscarriage all through her pregnanacy not just her first trimester.. This happened to all her children but me and I only survived because I was a twin (or so they say). Back then they described it as the body trying to kill what it thought was a disease... however as mum got older she had terrible trouble clotting and found out she had DVT...about 5-6 years ago, I almost lost her as a blood clot was travelling to both her heart and brain she had emergency surgery. They have it (they think) under control.
Im not sure if any of you know of an anti- body that could do this? and/or be associated to endo? I clot severely on my period and I reject all hormones they are besides surgery the only things that can help me.
Mum doesn't know what her anti-body after she had me she didn't want anymore children (she was 37) so she forgot about it...both her doctors have retired or passed away and they can't get that far back into her medical files for one reaosn or another.. they did mention she couldn't access that info based on something she signed giving the professor all rights to it and therefore her records unable to be shown without his concent (which is hard if he isnt alive?? :S). At the time, in Australia there was only a couple of other women with this antibody (she said less than about 5)... (another reason why she can't remember the name)...her GP has given her a list of things it could be and I'm asking her to get those tests done...
Does anyone have any ideas?
An Anti-body that causes significant miscarriage (at any point in the pregnancy not just in the 1st trimester), clotting etc.. and could somehow be linked to endo? (But I suppose it doesn't HAVE to be).
I share some things in common with mum, we're both very cold hands and feet, abornomal pap smears... and I'm being sent for a colonoscopy to rule out a few things (mum had bad poylps/cancer in her early 30's almost losing her bowel function completely). To top it off I have a shocking immune system.
I know you all can't tell me what it is.. but it'd be nice if anyone had an idea...maybe it's something the GP wrote down for us both to be tested on??
Really appreciate responses!
Tatum :)
I only have a second to type this but the gene that you are talking about is the same one I have. Its called the MTHFR double mutated gene and can cause miscarraiges, strokes, heart attacks and clots and is actually found to be the reason why young women have these issues at an early age. It could also be the Factor 5 leiden gene but it sounds more like the MTHFR gene to me. I also have APS so when I got pregnant my high risk OB tested me for this gene and sure enough, I had it. I had to take extra precautions because of it and still do to this day.
You should probably be tested for this gene if you ever want to have children. You would need to be on high folic acid if you do which you should probably take anyways just to be on the safe side. You would need to take 1mg tablet every day. Your mom should also be doing this. Maybe your mom should be retested as well. Having this test done can save your life...Its possible your mom also has APS. This MTHFR gene can be common to have with APS.
I also had precancerous polyps at 29 and need to have another colonoscopy which I have been putting off. Im ow having stomach issues and am worrying its my liver due to the drugs I am on or colon cancer.
Have you and your mom been tested for APS via the Beta 2 glycoprotein blood test? This auto immune disease can cause many many symptoms other then just clotting. You guys should both have it checked. Sounds like the cold hands is Raynauds which is common with auto immune diseases (i have this also).
Hope this all made sense. Trying to rush to write it..toddler screaming for me...Feel free to message me if you have any questions.
Hugs and welcome to the group
Mum is going to be tested tuesday afternoon so I should have the results by the end of the week (here's hoping).
Then I'll go get tested. I'll let you know how the colonoscopy goes oh and of course the blood tests! It's so hard..knowing one auto immune disease links to another makes all my auto immune issues sort of make sense.
Asthma, ezthma, kidney issues, bad blood circulation (I always have cold hands and feet REGaRDLESS of the weather!), abnormal pap smears, Im not very quick to make white blood cells and I always get a cold or something 10 fold because my immune system is down :( It's not cancer they just said once before when I had a Kidney infection I need a bit of help sometimes (that time they pumped my bone marrow with some drug to help me), I also have HPV1 I never developed an immunity to. That's all I can think of right now.... well there are a few other things but they arnt diagnosed quite yet.
Thanks for your help.. if I think of anything else or when I get back the tests I'll be sure to get in contact :)
Hope you're well!