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. 

It wasn’t until freshman year in college that I was able to recognize my “normal” periods were far heavier than what is considered normal. With heating pads on stomachs and chocolates in hand, a close friend of mine and I convalesced, complaining about how it really sucks to be a woman sometimes. 

She commented that her period was occasionally so heavy, she had to double up— use a tampon and a panty liner. What? I thought, thinking also of my tampon, nighttime pad and leak-proof underwear. She doesn’t double (or triple) up every day? 

I said as much, and she looked at me with intense confusion. It was then I realized my “normal” was anything but average. 

One night, I nicked my ankle in the shower while shaving and went to visit the same friend. She opened the door and said I looked like a ghost. When she saw the soaked gauze on my ankle, she was mortified. As I tried to explain what happened, she quickly responded, “If I cut myself in the shower, I can just use a Band-Aid. Are you sure you don’t have hemophilia or something?” 

I didn’t have hemophilia. I knew I didn’t. I just had PCOS, hypermobility, fair skin and I bled a lot. 

I called my mom later that night. She had worked as a writer for a bleeding disorder clinic for more than two decades, so she probably knew more than I did. We agreed it wouldn’t hurt to have them check me out. Still, both of us were skeptical. Nothing about our cycles seemed out of the ordinary or harmful to us. Similar to my experience, no doctor had ever suggested anything beyond birth control to regulate her period.

Further Testing and von Willebrand Disease (VWD) Diagnosis

My mom helped me get an appointment with the clinic, and after some thorough tests I was diagnosed with mild to moderate von Willebrand Disease (VWD). I learned that my hypermobility was connected to my bleeding disorder. 

With the news came a lot of relief, some ironic realizations (after all, my mother had been working with these doctors for over 20 years and she never considered I might have the disease, let alone have gotten it from her!), but also some deeper questions about why the realization didn’t come sooner. 

My dear college friend helped catalyze this diagnostic process, and it took an outsider to recognize my experiences weren’t normal. But why wasn’t that outsider one of the many healthcare providers I’d seen over the years? Or even my mother who’d had significant bleeding episodes in her past? 

Despite seeking help for heavy periods and hypermobility for years, no one suggested I investigate VWD. 

My experiences with VWD are ongoing, and I’ve found ways to cope and retake control of my cycle. I’ve found a team of doctors from Cincinnati Children’s and the Hemophilia and Bleeding Disorders Program who truly listen and acknowledge my experiences. I have educated myself on the symptoms of VWD and learned how best to take care of myself. 

To other young women who deal with symptoms like mine—advocate for yourself. Ask your doctors questions to ensure your diagnosis makes sense. Doctors have medical expertise and are great allies, but you are the expert on your own experiences. 

Outside of the doctor’s office, break down the stigma of talking about periods. I was diagnosed later in life because I never questioned if my period was “normal.”

(Published August 2022)