Quick history recap: massive PE July 2014 at age 31, no known clotting factors but had severe stomach bug and a 5 hour car ride in the days preceding the clot. Hematologist put me on xarelto and planned to keep me on it indefinitely because he's not comfortable with the size of the clot I had (15mmx19mm) with such minor precipitating events.

Since then, I've had massively awful periods with bleeding so bad that I can't really leave the house for 1-3 days each month. This past month I freaked my husband out because he happened to be in the room when I got out of bed and the blood overflowed my pad and spilled down my leg, soaking my pj pants and socks and leaving a little puddle of blood on the floor. It's like this every month, I call it a crime scene when I have my period because I literally cannot go anywhere without leaving blood behind. I've become anemic and have been on iron supplements for over a year now. The iron, of course, has unpleasant side effects that I have to deal with because as long as I'm bleeding like this I need the supplementation. Hema has given me no good answers and I just have to deal with this.

Now after having 3 colds in 3 months, I got a massive bloody nose this week. It terrified me to have that much blood coming out of my nose so I went to the ER. After an hour of very firm pressure, the bleeding stopped and I went home and was told to follow up with hema. Hema was not concerned, they expect bleeding while I'm on xarelto. Two days later, I'm with my 5-year-old, picking up my bike from the bike shop when I sniff (totally normal as my nose has been running almost constantly for 3 months now) then the blood starts gushing again. I'm stuck in the parking lot for 15 mins clamping my nose with my son in his car seat trying to figure out what the hell I'm going to do. I called my hema and spoke with the physician's assistant who told me to clamp HARD for 30 more mins and then head to ER if it doesn't stop then. So I make the 25 min drive home with one hand clamped on my nose and one hand on the wheel. Once home, I blow some huge clumps of bloody who-knows-what out and it slows significantly so I figure I can skip the ER this time. All weekend though, I've been able to taste the blood going down the back of my throat and I can see it in the mirror. Nothing is coming out my nostrils anymore but this nearly constant post nasal drip is definitely blood tinged.

Is this kind of bleeding normal? I'm really alarmed at how nonchalant my hema is about this. At the beginning, he said I'd stay on xarelto unless my body didn't tolerate it. Living on the brink of anemia, losing 1-3 days every month to bleeding, and now worrying about gushing from my nose at any moment sure feels like "not tolerating it." The PA told me she understands my concern but they feel like the risk of bleeding is less than the risk of another clot because it was so huge. She said the decision is ultimately mine, of course, but the hema will not recommend me stopping anti-coagulants.

I just don't know what to do. Is this really normal? The standard is to stop the meds a year after a first clot, or even a bit less. I understand he's being very conservative and I do appreciate this, but sitting in a parking lot having my son sit and watch me gush blood from my nose was just a very low point. I have a pre-existing anxiety disorder, which makes this whole thing so much harder. I'm going to be an anxious mess either way, either I worry about all this bleeding or I worry about another clot.

Thanks for listening, I had to get this out to people who can relate!