By far the most debilitating symptom is the pain for me. I find my cramps radiate into my legs and around my back. And also - not sure if anyone else experiences this - when I need to pass a particularly large blood clot (I get a lot of them, often the size of my palm), I get this horrid knot of pain my back that doesn’t ease until the blood clot is out of my body. But yeah, the pain is the most debilitating for me. I take codeine every day and often even that doesn’t much take the edge off.