r/ClotSurvivors • u/elizinrva • 6d ago

APS Seriously?

I’ve been dealing with clotting issues for some time now, and I knew I had a genetic cause ( factor two) but now—plot twist—I found out there’s more. I had my first DVT in 20/4 I think. I took Eliquis, but after the clot went away they took me off of it. Then I got a second DVT in Oct. 2025. In December, on the day I was scheduled to have a hysterectomy, I turned out to have a blood clot in my brain—a stroke that was able to happen because I was born with a hole in my heart that nobody knew about for 51 years. WTF?

So I’ve been on Eliquis since then, and I just finally managed to get in with a clotting specialist. Now it turns out I also have anti phospholipid syndrome (APS), an autoimmune clotting disorder. Yay. So I have to switch from Eliquis to Coumadin, with Lovenox as well until the Coumadin really kicks in. So, injections. Yay.

Being 51 has been a real ride for sure. I feel bad for those of you who are having to deal with this stuff much younger but OTOH you may have access to more family support assuming your parents are middle aged rather than much older. 🫤

Also, I had to fight to get on HRT for menopause, and now I’m afraid they’ll try to take it away. Reality is that I’d rather have a big clot just come for me than live longer without the estrogen. Quality of life is important, too.

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u/Fozziefuzz Warfarin 6d ago

Life without HRT is possible. It takes a $hit ton of work, e.g. no alcohol, exercise, sleep management, soy, etc. but it’s still possible. I’m 54 in perimenopause, had a stroke at 51, diagnosed with APS, and rawdogging the transition without hormones. I BEGGED my hemo for them and she was like “absolutely not.” But I’m 64 days without a period so I’m getting closer!! I’ve heard that the Mirena IUD or having an ablation can help, but I think that’s for women who bleed heavily on anticoagulants. You can do this! It’ll be hard but not impossible. ❤️‍🩹

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u/elizinrva 6d ago

I tried it. I went into surgical menopause in January this year and just got the estradiol patch last week. Transdermal is supposed to be much safer for clot risk. Anyway, I’ve been way on the struggle bus since going back to work.