Let’s talk about potential bleeding risk after hysterectomy

I suddenly felt wet when I shouldn’t have. I ran to the bathroom and began pouring blood into the toilet, turning the water there a bright red. I gave myself an IV infusion of factor VIII, a protein I’m missing that’s necessary for blood to clot. As a result, the bleeding slowed slightly.

But I was still soaking the heaviest of pads every 30 minutes. That wasn’t supposed to be happening. I’d had a hysterectomy three weeks earlier, and no bleeding was supposed to occur from there anymore. Terrified, I headed to my local hospital’s emergency room, which was many hours away from my hemophilia treatment center.

There, I explained to the nurse that I have hemophilia A. I’d infused factor VIII to help with the bleeding before I left for the hospital. Trying to be helpful, the nurse asked why I didn’t just take more. I explained how that wasn’t the way factor VIII works, as it must be administered under a specific regimen directed by a specialized hematologist. Not enough factor VIII causes bleeding, but too much can cause blood clots.

After a mildly helpful cauterization in the emergency room, eventually, the bleeding started to slow. Hours later, the ER staff decided to let me go home, because monitoring me in the hospital wasn’t really any different than my doing it myself.

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Three weeks before all of this happened, I’d had an eight-hour surgery that included a hysterectomy, oophorectomy, sacrocolpopexy, and vaginal sling, with two teams of doctors tag-teaming based on their specialties. My hemophilia treatment center had created the bleeding treatment plan, which included factor VIII to help my blood clot immediately before surgery, then eight hours into the procedure, and eight hours after that, and then every 12 hours for a few days.

Finally, I moved to infusions every 24 hours until I hit the 10-day mark post-surgery. At that point, my treatment team thought I was out of the bleeding danger zone, and all medications were stopped.

My sister, who also has hemophilia A, had a hysterectomy a few years after me. She made it through her surgery well. Yet she, too, found herself in the emergency room a few weeks after surgery, also pouring blood and needing factor VIII infusions to stop it when her stitches dissolved.

Is this a common oversight?

So what happened to the two of us? In both cases, the separate hemophilia treatment centers did a great job devising a plan to protect us during our surgeries and well into the healing period. What both treatment centers neglected to consider was the bleeding risk that occurs around three weeks after a hysterectomy, when the stitches begin to dissolve. It’s a common time for anyone to bleed after a hysterectomy, and it’s a period of higher risk for people with bleeding disorders.

According to the U.S. Centers for Disease Control and Prevention, of the 24,508 people seen with hemophilia A at federally funded hemophilia treatment centers from Jan. 1, 2012, to March 31, 2024, only 3,562 (14.5%) were women. Of those, only 1,587 (6.5%) had the label of “mild,” “moderate,” or “severe” hemophilia. That’s a small number of women spread throughout the U.S. Of these women, I imagine a limited number have hysterectomies each year.

I’m not sure all individual hematologists see enough hysterectomies for it to be on their radar to protect women weeks after surgery as stitches start to dissolve. The National Bleeding Disorders Foundation‘s (formerly the National Hemophilia Foundation) Medical and Scientific Advisory Council provides recommendations for the treatment of bleeding disorders. In 2021, it issued an advisory for the treatment of women with bleeding disorders.

It’s an important document, but doesn’t specifically talk about hysterectomies and the bleeding risks associated with stitches dissolving. To my knowledge, no such documents discuss this risk. We need to provide specific recommendations to mitigate bleeding during that specific time point post-hysterectomy.

Thank heavens for community. That’s the beauty of rising to support one another. Sharing our stories is critical. By talking to each other about our experiences, we can help protect current and future generations.

Here’s the moral of this story: If you need to plan and discuss post-hysterectomy safety with your provider, ask what protocols are in place to protect you from excessive bleeding when the stitches dissolve. This simple question, along with a comprehensive plan, may help you avoid a trip to the emergency room weeks after having a hysterectomy.

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.