blood clotting disorders

[kirasieni]

Out of curiosity has anyone here been diagnosed with any kind of blood clotting disorder? During my pregnancies I have had alot of bleeding and last time my placenta abrupted so when I was pregnant this time my Dr did a test and sure enough I have a clotting disorder which causes my body to produce clots more easily. Expecially during pregnancy when my hormones are high. I wondered if this could be a link to IC.
I expecially was wondering when I heard that herapin injections are a treatment. See why I linked this in my head? ALso my mom was diagnosed with urethral syndrome which alot of drs think is IC and she has the clotting disorder too.

[rjyoon]

I have Idiopathic Thrombocytopenia Purpura. It's different than what you mentioned, and is unrelated to any IC treatment. My hematologist does think that the IC & ITP are related somehow, as he has another patient with the same combination.

[crystilclear]

During my pregnancy with my daughter I bled until I gave birth to her. The doctors treated my symptoms and never tried to figure out the reason behind it all. Every month I get my period I have blood clots come out. The doctor says it's nothing to worry about but when I went to the hospital 3 weeks ago they thought I was miscarrying because the clots were so big. I don't like the doctors I see. They don't want to help at all. One keeps saying I have PMS. The gyno did a vaginal exam and said he ruled out endo (which I've been told can only be done by Laproscopy). I really don't know if it is caused by IC or if it is harmful. I hope you get some answers soon. I'm sorry I wasn't much help. Take care - Chris :)

[kirasieni]

I have something similar to factor v leiden. I was reading that they think fibro li linked to it. My brother died from a stroke from it at 32 years of age. I just think its interesting that some form of herapin (SP) treats both dont you?

[Judith56]

I have something called superior vena cava syndrome- not good! I have clots in my superior vena cav which is a major artery that goes into the heart as well as blood clots in many of the viens in my chest. I had angioplasty almost two years ago. I am on Coumadin for the rest of my life. I have this because I have a chem port in my chest for IV meds. I don't know if I am ever able to get rid of the port if I would still have to be on Coumadin. But becuase of my other health issues, I most likely will always have a port. Judith

[Indy]

I have antiphospholipid syndrome that I found out before years before my IC. It caused 8 miscarriages from blood clots in the placenta. I have to take a baby aspirin every day of my life to prevent clotting and can't take hormones.

I did have a successful pregnancy being treated with aspirin and heparin injections.

This is an autoimmunity problem and I believe IC is too. I also have fibromylagia.

This stuff is all related!

[Babs RN]

I have antphospholilid antibody disorder, and Factor V Leiden mutation. Thw APSL makes too may clots in the araa affected and the factor V is a protein-C d(so therefore I make clots and then can't ger rid of them. I on injectable Heparin for my entire pregnancy,,the worst thng I have expericed are a blood clot in my land a left sided stroke. Still alive and kicking at almost 34. if you need to talk, PM me.


Hugs,
Barb

[BLOORE74]

Ever since I got ic & they put me on all kinds of meds I have a problem w/ my blood clotting. Even just shaving my legs if I just slightly cut them I bleed like crazy! I also bruise easily. When I went 4 surgery they were putting in my iv & the nurse had a problem & she took it out & restarted again, 3 TIMES!!!! Every spot she poked bleed like crazy!!! She asked if this usually happens I told her yes & told her my meds & she didn't know which one would do that. I don' t take any blood thinners. They almost didn't do the surgery cuz of the bleeding, I said u poked & protted me & took 4 tries to get my iv in & we're about 2 go into the operating room, U better do my surgery!!!!!The funny thing is I told both my docs about the blood thing & I never got a response from sither of them on in, huh. But I should've followed up on it. I just try 2 be careful, being on demerol doesn't help.

[Mimi-in-Chicagoland]

I have factor V leiden which is genetic. I have had a TIA and a stroke. I had a PFO hole in my heart that let the clots pass. I was on coumadin for about 9 months, but I'm off of it now. My hemotologist said I could go without the coumadin unless I had another blood clot. I'm not taking hormones, and I take preventative measures when I travel to prevent clots--like walking every hour during long road trips and if I were to travel overseas I would give myself a heparin shot. For my recent surgery, I had support hose, compression stockings, and a heparin injection. For pregnancy, I will be on heparin shots and have a c-section (interstim implant).

[sue041]

My youngest sister passed away two weeks ago, and no one knew she had factor v leiden, when they did the autopsy the corner called a meeting for the family to come to his place and told all the family members to get checked. My sister had a very enlarged heart and corner said she was just full of blood clots. Yes I got checked and I have it too. So does the other five members of the family and even the grand children. Now can person who has that be a organ donor?
I am sorry to read about so many of you having disorders of one thing or another. Please keep in touch and let me know if there is anything else beside blood thinners that can be done.
Good Luck to all
Sue,from PA.
:pray:

[Claire_A]

My mum has antphospholilid blood...Her pregnancy was a nightmare with me. She doesnt have IC but has Lupus. I am sure there is a conneciton between her health and me developing IC.

[Mothergoose]

I find this a very interesting link.

All my life I have bleed and bursied much easier a than most. As a small child had to have a blood transfussion after having my tonsiles out, when I hemoraged a week later, I had been bleeding slowly all week.

I had nose bleeds all my life, the kind that don't sto and have been hospitlized from them.

From my first period on I always bled have and long, with lots of clotts. I finally had a hysto for Andeomyosis, it was making bleed so much with never ending periods I got too anemic.

Now I alwys turn up with huge brusies that I can't explain, and bleed lots when I get blood drawn etc.

Over the years I have been told off the cuff, it is caused from one thing or another, at the moment the thinking is I am on an NSAID reg, which thins your blood. I have never actually had it investigated. Actually have never thought to ask to be, just accepted one reson or another.

This might be worth looking into. I have never had a blood clot in my body, but of course my problem is not enough clotting, not too much.

Thanks for shareing your stories.

We all need to share or off beat stories, maybe we will see patterns in problems that maybe IC related, that get over looked by Dr's. I mean just because they don't see enough pt's with the same problem's to make connections.

Thanks MG

[sue041]

:( I think we should all be tested for other blood related conditions, not wait until someone dies in your family or relative pass away and then when they do the autopsy they find the disorder. Almost too late then
Take care and thanks for posting so we all can maybe benefit from this IC board.
Sue041:help:

[Daisy Mae]

I am shocked that I never saw this thread before, or if I did then it was erased by this horrible brain fog.
For years I've been treated for multiple disorders, IC being the most debilitating but also life-threatening blood disorder. I have APS, but had previously been dx'd with antithrombin III disorder. I'm stunned that so many women with IC also have clotting issues.
I knew Barb, we talked on the phone a few times and communicated by email. She was the only person I knew with both IC and APS and was also a nurse, so we had 3 main things in common. I happened upon this thread tonight and was wondering why I hadn't heard much about Barb in such a long time. I had no idea she had passed away. I am heartsick, and sad that I didn't know it all this time until now.
I would love to talk to yall more about the connection between these disorders. I also have 2 new diagnoses that were made official nearly 3 weeks ago with some test results. Inflammatory arthritis and connective tissue disease.
I'm just really taken aback about Barb. I had just hoped she was feeling good and too busy to come to ICN and healthier. Does anyone know what happened? I just want to cry.