Share Your Story: My Diagnosis Story
Growing up, I was known as "the nosebleed girl." For several years, I suffered nosebleeds for hours a day. At school, I had to spend a lot of time in the nurse's office. I became such an expert at handling nosebleeds that I could do most of my daily tasks, such as getting dressed, with a single hand. Doctors said I would grow out of it and suggested I get my nose cauterized. After 3 cauterizations, my nosebleeds finally dissipated, and my bleeding problems faded into the background. That is, until I got my period.
It took years to become somewhat regular, and I often suffered from what appeared to be multiple periods a month. It was embarrassing. I had to go to the bathroom every hour or so and sometimes bled onto the floor if I stood up after laying down for awhile. On top of that, it hurt, and I would feel faint from bleeding so much. Still, I didn't think much of it because heavy periods ran in my family. I never told the doctor because they didn't ask. It wasn't until I had a bad reaction to a hormonal medicine that doctors started questioning my heavy bleeding.
Now, about a decade after my first period, I have finally been diagnosed with Von Willebrand's Type 1, a disease that I knew nothing about. I wish the conversation around periods was more open and that more people experiencing heavy periods knew to to look for bleeding disorders. When it comes to these things, it is really important to speak up even though it can be awkward. My advice to anyone in a similar scenario is to be your own biggest advocate. If you are experiencing severe periods, you don't need to suffer in the dark. It may take some time, but if you are open and honest with your doctor, they may be able to help you identify what is wrong and help you figure out a solution. I am so happy to have a diagnosis because now that I know what is happening to my body, I don't have to feel so ashamed about it.
Thanks so much for sharing your story with us, and I am so happy you were able to get the diagnosis and care you deserve!
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Before working with the National Bleeding Disorders Foundation, I worked in reproductive…
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