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Factor V anyone? Factor V anyone?

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  #1  
Unread 03-06-2007, 08:00 AM
Factor V anyone?

I've been diagnosed with adenomyosis and my doc strongly suspects i have endo as well. she's recommending either an embolization or a hysterectomy. My real issue is with the pain. I also have factor V blood clotting disorder and i'm concerned about hemorraging with an embolization or the hysterectomy. anyone have the same factor V and also had either procedure? I'd love to hear your story.
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  #2  
Unread 03-06-2007, 09:04 AM
Factor V anyone?

Bailey-
I've not had the Factor V Leiden diagnosis (yet) but have had DVTs (in my case post-thrombotic syndrome) since my second pregnancy. I do go to see a hematologist this week though as we thought it might be a good idea to know before they cut me open.

What's your maintenance regimen? I'm on a really funky warfarin dosage -- 15 mg 2x week, 11.25 mg 5 days of the week. And.. the ever present compression stockings. As I understand it- they didn't know about Fac V back when I started the oddysey and as the treatment is the same regardless of whether or not I have the disorder, it was moot until I needed surgery. Which by the way-- I'm having a double-doozie with lap-coli for the gallbladder and the LSH next week.

Good luck to you- I'm interested to see the responses you get.

Sally
  #3  
Unread 03-06-2007, 11:26 AM
Re Factor V

Hi!
You're right about factor V being new. It runs in my family as my Dad discovered he had it after getting a huge clot in his leg after a long airplane flight. I'm not on meds yet. My dad and my aunts are all on daily cumiden. I haven't had any clots so my hematologist doesn't want to start anything until and if i ever develop a clot. I'm concerned about the hemorraging factor from the embolization or a hysterectomy. I am also going to see my hematologist this week to see what she says. i'll keep you posted and good luck with your surgery!
bailey
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  #4  
Unread 03-06-2007, 08:25 PM
Factor V anyone?



Is the doctor who treats you for the Factor V aware that you are looking at some type of surgery? What suggestions does s/he have?

I did have internal bleeding following my hyst (and I have no bleeding disorders that we know of) so I would think it would be wise to make sure all of your doctors know what is going on.

While a hyst does cure adeno, it does not cure endo. You will want to make sure your surgeon is very skilled at spotting and removing endo. Endo can have several different appearances and can be very microscopic so it can be hard to detect and thus left behind after surgery. You may want to visit with an endometriosis specialist. You may also want to read through the Hyster Sisters' Endo/Adeno Resources.

Estrogen is believed to feed endo so you will need to discuss whether or not to keep your ovaries with your doctor as well. Replacement estrogen can also be an issue so endo ladies sometimes find they are without hormones completely if their ovaries are removed. And with the Factor V, HRT might be out of the question anyway.

I wish you the best and hope you are able to find information that will help you with your decision. Feel free to use the search tab at the upper, right of your screen to look for other threads discussing your medical conditions. s
  #5  
Unread 03-16-2007, 06:58 PM
Got my diagnosis...

Bailey-

I got my diagnosis and yeppers... I test hyper for Factor V Leiden. They are completing other tests to check for other genes as some of those disorders can "cascade" on top the DVT/PTS problem.

Since my original date got rescheduled...I visit the gyno next week to get all the particulars about exactly when to stop the coumadin and let me tell you-- that is the scariest part to me. Not having my blood thin enough always gives more pain in my "bum" leg and that alone stresses me out. The new hematologist says he'll be there on surgery day to check on me and since I've got two other surgeons... surely to goodness they can pull me out of this without kicking a PE.

Oh, well... just a few more days and then.. I'll be a new woman!

Sally
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