Deep Vein Thrombosis (DVT) Support Group
Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.
Hi all,
I'd really appreciate your advice.
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 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 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 old 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 that are besides surgery the only things that can help me.
Mum doesn't know what her anti-body is she forgets..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. 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, 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).
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'd really appreciate your advice.
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 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 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 old 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 that are besides surgery the only things that can help me.
Mum doesn't know what her anti-body is she forgets..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. 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, 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).
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'm sorry to hear you're going through all of this and what your mum has been through too. I think the name of it is APS or Antiphospholipid Syndrome. I'm not sure if it has anything to do with endomitriosis though...If you think that that is what it is, there is a separate support group on here, I hope it helps:
http://www.dailystrength.org/c/Antiphospholipid-Syndrome/support-group
All the best, and I hope you find some answers :)
Primary APS is when the dieases appears on it's own but secondary APS is when it appears in conjunction with another autoimmune disease. (have a look for this online because it is fairly complex to understand though)
I really appreciate your help.. I might go into that group tell them my story and see if they have insight.
You're all so wonderful :)
*hugs*
I have always had a fight with my health.. I have a lot of kidney issues and bladder issue (all connected), I suffer from Asthma, Exma (however it's spelt) and if someone has a cold I can garuantee you I'll get it. I had an incident when I was 14 where I had a nasty kidney infection and my body couldn't fight it off, my bone marrow wasn't making enough 'white blood cells' they told me. So they gave me something to pump it, and then I made too many I started to attack the good ones in my body =/
I do know my blood isn't amazing.. I have a lot of trouble with coldsores, my blood was tested and found that I have the virus in my system and the only way to help is with the same medication they give patients for genital warts.
To say the least... My immune system is far from perfect!
If it turns out I have anything, I'll be sure to let you all know. You've been so wonderful :)
Take care Taters, see you in the APS forum!