Battling self-doubt as a woman with bleeding disorders
Even after a lifetime of managing bleeds, I still sometimes hesitate
A few years ago, I woke up to find my right breast swollen, hot, red, and extremely painful. Beneath the skin was a lump that felt about the size of a golf ball. I’d had mastitis before, in the other breast, so I wondered if this pain could be the same thing. But something felt different. Something felt worse.
Because of my dense breast tissue and a previous biopsy, I thankfully already had a breast surgeon on my care team. He saw me the next day and took one look before saying I needed surgery right away. He was concerned it could be inflammatory breast cancer, a rare but aggressive form.
That’s when my bleeding disorders — hemophilia B and von Willebrand disease — complicated everything.
Surgery couldn’t proceed until I worked with my hematologist to put a treatment plan in place. I needed clotting factor infusions before, during, and after the procedure. The pain continued, and the fear escalated. I was bracing myself for a cancer diagnosis while also worrying that my body might not clot properly during surgery.
When I finally woke up after the operation, the surgeon looked at me and asked, “You weren’t hit in the breast, were you?”
“No,” I told him.
“Are you sure?” he asked again.
“I’m sure,” I said.
“Well,” he replied, “the lump was a hematoma. Your milk ducts were inflamed and full of blood. I’ve never seen anything like it.”
The good news: I didn’t have inflammatory breast cancer. The bad news: It was possible I had a rare inflammatory breast condition that could eventually require mastectomy.
As he was about to leave the room, I had a realization. “Wait, could this have been caused by my bleeding disorders?”
He thought for a moment and replied, “Yes, it’s possible.”
The effects of going unheard
In the days and years that followed, I kept replaying the incident in my mind. Even with two diagnosed bleeding disorders, it hadn’t occurred to me until after the surgery that spontaneous internal bleeding could have been the cause.
The problem hasn’t resurfaced. Today, I 100% believe I had a spontaneous bleed in my breast.
That’s what years of medical dismissal can do. When you’re told over and over that your bleeding “isn’t that bad,” or that you’re “just bruising easily,” you start to wonder if your symptoms are real, or if you’re just imagining things. Even now, after a lifetime of managing hemophilia and von Willebrand disease, I still sometimes hesitate.
This kind of self-doubt is one of the most damaging, lasting effects of being unheard. And it’s why we need doctors to take women with bleeding symptoms seriously. Not just when it’s obvious, but every time. We need earlier diagnosis, better education, and clinicians who understand that bleeding disorders aren’t just a man’s disease.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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