Weighing risk vs. benefit of different medical procedures
With bleeding disorders, surgical procedures must be carefully considered
“Let me see if I’m hearing you correctly: If I get the lip biopsy and it’s positive, it’ll confirm that I have Sjögren’s syndrome. If I get the lip biopsy and it’s negative, I likely still have Sjögren’s syndrome and the treatment plan I’m on won’t change either way?”
The answer to my question was “Yes.” And my answer to whether I was willing to get a lip biopsy was “No!”
People with Sjögren’s syndrome don’t always test positive for it when blood work is done. Lip biopsies are one way doctors can diagnose Sjögren’s syndrome by looking for clusters of inflammatory cells. Subjecting myself to a lip biopsy made zero sense to me as a woman with hemophilia. I’m in a few social media groups that offer support for people with Sjögren’s syndrome. Many of the people in these groups have talked about their struggles with healing and prolonged bleeding after a lip biopsy. And these were people who didn’t have diagnosed bleeding disorders.
My symptoms align with Sjögren’s syndrome, particularly my struggles with dry eyes and mouth. I’m treating these symptoms with prescription and over-the-counter remedies. Nothing would change my treatment plan if a lip biopsy secured a definitive diagnosis. I felt that the risk of bleeding wasn’t worth pursuing a conclusive diagnosis. Thankfully, my rheumatologist understood and supported my decision.
Celiac testing?
I had a similar encounter years ago when a doctor wanted to determine whether I have gluten intolerance or celiac disease. At the time, the doctor wanted me to eat an entire loaf of bread over the course of a week and then have an endoscopy with biopsies to look for damage to the villi in the small intestine. But I get violently ill when I accidentally ingest gluten. And I mean VIOLENTLY ILL.
Whether I have a “celiac” label or a “gluten intolerant” label, my behavior won’t change. I stay away from gluten because it’s clear that it makes me sick. Subjecting myself to a week of being violently ill after ingesting gluten so that damaged villi will appear seems unreasonable. Also, anytime a scope is used and biopsies are taken there is a bleeding risk. Again, it didn’t make sense given that my treatment wouldn’t change and the risks of the procedures, given my hemophilia, just weren’t worth the benefits.
Mesh removal?
Additionally, in 2018, I had a hysterectomy that included the placement of a vaginal sling to treat urinary incontinence. It worked! While I’m thrilled the surgery was a success, a very small piece of mesh has poked its way through the vaginal wall and cannot easily be removed. The urogynecological surgeon told me surgery could remove all the mesh via an intricate procedure (think of removing a piece of gum from one’s hair), but there would be bleeding risks. Or, I could choose to live with the small exposure.
Again, being a woman with hemophilia can pose challenges with surgeries and healing. As such, I choose to delay mesh removal to see if I can live with minor mesh exposure. It’s been two years, and so far estrogen treatments have kept surgery at bay. The choice is ultimately up to me. If the mesh becomes an issue that affects my health or causes pain or discomfort, removal would be an important option. At that point, I’d need to involve my hematology team to mitigate bleeding risk. For now, it’s not bothering me enough to make it worth tackling the potential bleeding issues.
Weighing risks vs. benefits a necessity
I’ve turned down three procedures because I believed the bleeding risks outweighed the benefits with hemophilia. In two of the cases, nothing would change in my treatment regimen regardless of the results of the testing. Making these decisions can be tricky. When medical professionals want us to consider diagnostic or surgical procedures, it isn’t something to take lightly.
I’m so thankful my doctors were willing to listen to me and, ultimately, let me decide how comfortable I felt about proceeding. They understood that risking bleeding made no sense for me and my current circumstances, which made me feel heard, supported, and validated.
Everyone with a bleeding disorder has the right to discuss risks versus benefits with their care team. If a medical professional recommends you have a procedure and you don’t understand why, it makes sense to do more research and see how your medical plan might shift based on results from the recommended procedure. What I found is that some procedures weren’t really medically necessary for me, because the information gained wouldn’t inform my care or treatment and could place me at needless risk for bleeding.
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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