My Personal Journey to a von Willebrand Disease (VWD) Diagnosis
- By Margo D'Agostino
My mom gingerly knocked on my door. I was 12 years old and about to face some major life changes. She gave me a copy of “The Care and Keeping of You: The Body Book for Girls.”
Her monthly menstruation periods were also incredibly heavy, so she was prepared with supplies and comfort measures for me—pads, chocolates and a heating pad—when my first period eventually arrived.
Like many young girls, I was mortified and more than a little peeved that I would be facing such a monster every month. But my cycle was regular (albeit very heavy), and my family was open to talking about it. As far as I knew, I was healthy and normal.
Besides, I had more important things to worry about than questioning my body’s transition into womanhood. I was a good student and eager to make friends. I wasn’t going to let heavy periods stop me.
Warning Signs Lead to Hypermobility Diagnosis
There were certainly some other red flags unrelated to my period, but they could be explained away easily enough. I was an incredibly active child, signing up for dance, softball and volleyball. I always seemed to be getting hurt. I bruised easily and severely, but I blamed this on my naturally fair skin. The bathroom looked like a “crime scene” if I nicked myself with a razor while shaving—didn’t that happen to everyone? My knee joints seemed “loose” sometimes and my kneecap would dislocate. But I just popped it back into place.
After a while, I realized something wasn’t normal. After seeing orthopaedic doctors, I was eventually diagnosed with hypermobility, which helped explain my natural flexibility and predisposition to injury.
I learned through physical therapy and body awareness how best to keep my joints safe. I opted for lower impact sports like swimming and synchronized swimming in my late middle school years and—due to a combination of stress, hormonal changes and high activity levels—I stopped menstruating for about two years.
When my period resumed in ninth grade, it returned with a vengeance. Infrequent, heavy and inconsistent, my cycle had become a point of concern. My mother took me to see a gynecologist, who quickly diagnosed me with polycystic ovary syndrome (PCOS) and put me on a low hormonal medication [sometimes called oral contraceptive pills (OCPs)] in order to help regulate my cycle.
I had heavy, painful periods. My hormone levels seemed out of whack. I was slightly overweight—the PCOS diagnosis fit well enough (although it was later determined that I did not have PCOS), and the birth control meant I wouldn’t be bedridden for a few days out of every month—which was a fortunate outcome of the initial PCOS diagnosis.
Everyone around me seemed to repeat the same unspoken rule: periods are always bloody and painful, so we just learn to deal with them. I didn’t ask many questions, and I doubt many eighth graders were eager to talk about their “womanhood” with an unfamiliar doctor. I took the pill consistently all through high school, grateful that my periods were somewhat under control.
Realizing My 'Normal' was Far from the Average Normal
Senior year marked a shift in my cycle. It didn’t seem to stop. I was bleeding heavily for 25 days out of the month. Exhausted, anemic and two shades of foundation lighter, I returned to the gynecologist. She prescribed a pill with higher levels of hormones and suggested if my cycle was too heavy, I could skip the placebo days and (hopefully) avoid my period altogether.
The new pill improved my experience, but even with limiting my placebo pills I still experienced heavy periods. But they were shorter, and nowhere near a month long, so I was more than happy with the change.