Anybody else have Factor V Leiden?

Yes I'm so scared

@robinpope2013, you can search for available clinical trials at Mayo Clinic using this tool: https://www.mayo.edu/research/clinical-trials

You can also contact a research coordinator with your questions. They may be able to help match you with a trial for which you are eligible.
Phone: 800-664-4542 (toll-free)

Robin, you certainly have been through several serious health events. How was recovery from your stroke? And 6 heart by passes, woah? How are you doing now?

@rmd23, getting a clot or sclerosis everytime you have an IV is an issue. What does your medical team do to help reduce the risk of clot?

Hi! I'm a 49yo f with Factor V Lieden. I've had clusters of PE's several different times. I had a severe stroke 3 years ago and 4 wks ago had 6 heart bypasses. Are there any studies I can join to help with research?

I hope you find a good resolution. I’m so sorry you’re having vaginal pain with all of this. Why does women’s plumbing have to be so complicated?!? 🙄

I’m way past menopause now but I still follow this menopause doctor I like on FB because my daughter is entering that ‘disturbance in the force’ era. If you’re on FB, here is a link to her page.
The Pause Life by Dr Mary Claire Haver
https://www.facebook.com/drmaryclaire
Best of luck to you. I hope you’ll report back with the choice of HRT and if it improved your symptoms. What we share here can really benefit so many others going through the same thing!

Thank you for your wonderful info. We had a loooooong conversation on this. My MD takes the factor v seriously. I may need to be more clear that the tabs are not oral and are inserts 🙂 So, will this be safe to use???? So scary to me. We are trying to find a safe balance to vaginal pain issues and safety with all this. Thanks for all info and experiences.

This sounds like a complicated situation with your susceptibility of blood clots associated with the Factor V condition and taking estrogen/progesterone HRT, which can potentially increase the risk for blood clots.

From my understanding, through personal experience with HRT, is that there is less risk from clotting by using a transdermal estrogen replacement, instead taking oral meds. The oral tablets get processed by the liver where transdermal goes directly into your blood stream. I wonder if that might be a better option for you. But you still may need to balance that out with a micronized progesterone.
I used bio-identical cream going through perimenopause and it made ALL the difference in the world with those horrendous symptoms!

I found a good article that explains it much better than I can! It appears to be a site from Great Britain, but the information is what I wanted to share:
https://www.balance-menopause.com/menopause-library/is-hrt-off-limits-if-ive-had-a-blood-clot/
Doctors generally don’t receive a great deal of education on perimenopause or menopause so it’s just easy to prescribe the standard meds. It takes a little more effort to look into this and research healthier options. You might want to talk to a functional medical practitioner to get another option on treatment options. Or, if you can find a Women’s health specialist who is well informed on Perimenopause/menopause eduction and advancements.

Was this suggestion from estradiol with a primary care doctor, hematologist or gynecologist?

Diagnosed with homozygous Factor V at age 32 with intermittent clotting from my groin to ankle. Likely a 3rd generation birth control increased the event. Stable on home testing Coumadin with no other events. I'm now 53. Now I’m struggling with menopause feminine pain and my doctor says inserting estradiol tablets should be safe. I really need some evidence based research support on this. Tks

I have Factor V and have been on a baby aspirin for years. My problem is every time I have an IV for a procedure, I get a blood clot or sclerosis in that vein. How can I prevent that?

I'm currently on eloquis for factor V) but recently started DMSO (dymethylsulfoxide) for arthritis. It's a Vascodialater so it enhances blood thinners. Anyone have experience with vascodialators and thinners. I think I'll go back to warfarin and test INR. Is that the only way to know clotability?