Talking to Doctors About Hemophilia Symptoms

Posted on September 05, 2019

Many members on MyHemophiliaTeam describe challenges in talking to their doctors about bleeding disorder symptoms. “So sick of crappy doctors who ignore you!😢😢😢” posted one member. If you have experienced the frustration of having your symptoms shrugged off or disbelieved by a healthcare provider, you are not alone. Difficulty in discussing symptoms with physicians is an all-too-common a topic of conversation on MyHemophiliaTeam.

MyHemophiliaTeam members find that many doctors are unfamiliar with symptoms and complications of bleeding disorders. “Went to an orthopedic doctor yesterday to check out my hip,” wrote one member. “I am always amazed at the doctors uninformed about hemophilia.” Another member responded and empathized, describing problems she experienced after a recent surgery despite having informed doctors about her bleeding condition. “Afterwards I had complications with my coagulation team and ended up back in the hospital hemorrhaging. It’s so annoying. Don’t they read the charts?”

Pain is a common symptom of bleeding disorders, but one that is often misunderstood. A survey of MyHemophiliaTeam members showed that 57 percent experience pain, with only 38 percent feeling that pain was addressed by their healthcare providers. Members frequently describe doctors disbelieving reports of pain and even accusing them of lying to obtain pain medication. “I have been complaining about pain to my doctors for over a year and a half,” said one member. “I was labeled a druggie.” Another member asked, “What is it going to take to show our doctors we live in pain 24/7? We can't have every joint in our body fused to ease our pain.”

To MyHemophiliaTeam members, a knowledgeable doctor who will listen and take hemophilia symptoms seriously is valuable indeed. “Excited to meet my daughter’s possible new primary doctor tomorrow who currently has a VWD [von Willebrand disease] patient,” posted one member. A doctor with expertise in bleeding disorders can even make a difference for multiple generations of a family. One grateful member wrote, “Thank the Lord for Dr. Hinton. He figured out mom’s problem and told me to be tested. Yep, he was on track. I then had our youngest tested. Bingo, she too is a carrier. Don't give up!!!!”

Members who have found knowledgeable doctors give others hope that good doctors are out there. “After four doctors, I finally found one to listen to me. Turns out I have factor V Leiden and it's causing my pain. Find a new doctor!”

Struggling to talk with doctors about symptoms is a common topic of conversation on MyHemophiliaTeam.

Here are a few conversations about talking to doctors about symptoms:

Here is a question-and-answer thread about discussing symptoms with doctors:

Can you relate? Have you struggled to have an effective conversation with your doctor about hemophilia symptoms? Share your experiences in the comments section below or post on MyHemophiliaTeam.

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