Have bleeding disorders? Consult your hematologist before surgery.

“Don’t let anyone cut into you without talking to your hematologist first.”

That’s what my hematologist told me decades ago, and I’ve never forgotten it. It’s advice that may have saved my life more than once. For people living with hemophilia, von Willebrand disease, or rare factor deficiencies, involving a hematologist in your surgical care plan isn’t just a good idea — it’s essential.

That warning came after I made a decision I came to regret. Years ago, I was advised to have a procedure to remove precancerous cells from my cervix. It wasn’t an easy decision. I took my time, got second and third opinions, and finally settled on a gynecologist who seemed confident and reassuring. “This is it,” he said. “Let’s just take care of this now.”

I reminded him that I have bleeding disorders — hemophilia B and von Willebrand disease — and that any procedure, no matter how minor, comes with risk. He waved it off. “Nobody bleeds from this procedure,” he said.

Except I did.

About a week after the procedure, I began to bleed — heavily. I wasn’t even in my home state when the bleeding worsened, and I found myself in an emergency room, scared and vulnerable. The ER staff scrambled to stop the bleeding, unsure of what they were dealing with.

I ended up in what became the most expensive hotel stay of my life: a hospital bed. All of this could have been avoided if only my hematologist had been consulted before the procedure took place.

To a general practitioner or surgeon, a colonoscopy, dental extraction, or even the placement of a nasogastric (NG) tube may seem simple, routine, and low in risk. But for someone with a bleeding disorder, even a “minor” procedure can trigger a major bleed.

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The role of the hematologist

For those of us with bleeding disorders, a hematologist is not optional. They’re a critical part of our care team, especially when any kind of surgical or invasive procedure is involved. Even “simple” procedures like colonoscopies, NG tube placements, dental extractions, or cervical biopsies can lead to dangerous bleeds without a proper plan.

A hematologist can:

• Recommend and help administer treatment, such as factor infusions or antifibrinolytics
• Coordinate with surgical teams to ensure safe conditions and post-op care
• Help avoid medications that worsen bleeding
• Offer guidance for recovery and monitoring after the procedure.

Even those with mild hemophilia or factor levels in the normal range can be at risk. Bleeding disorders are complex, and their severity can’t be determined by numbers alone.

I’ve learned to trust my instincts. To advocate fiercely. To never again let anyone cut into me without having a hematologist in the loop.

Because when you live with a bleeding disorder, prevention isn’t paranoia. It’s survival.

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.