For years, I thought everyone planned their lives around their heavy periods

For most of my childhood and teenage years, I thought everyone planned their lives around their periods the way I did. I wore dark clothes to school, kept my backpack stocked like a field hospital, and constantly did the quiet math of how long I could sit through a class before I had to get up. I assumed this was simply what having a body meant, and that other girls were just better at handling it. It took me years to realize that what I had accepted as normal was anything but.

The clinical term is menorrhagia. Most guidelines define it as bleeding that lasts longer than seven days, or soaking through a pad or tampon every hour for several hours in a row. The first time I read that definition, I laughed — not because it was funny, but because it described a good day for me.

Heavy menstrual bleeding is one of the most common signs of a bleeding disorder. In women, it is frequently the only obvious sign for years. The problem is that periods are private, variable, and culturally coded as something you endure rather than investigate. A girl with a bleeding disorder doesn’t have anything to compare her experience to. So she does what I did: She assumes the problem is her tolerance, not her platelets or factor levels.

The people around her often agree. I’ve heard so many versions of the same story in the community — the mother who said it ran in the family and you’d get used to it; the doctor who reached for a birth control prescription without asking why the bleeding was heavy in the first place; the gym teacher who suggested she was being dramatic. The bleeding gets managed without anyone ever asking what it’s telling us. The symptom gets quieted, and the diagnosis stays hidden underneath it.

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We needed a common language

When I finally described my bleeding to my hematologist, I’ll never forget what he said: “I have nothing to compare that to — how does that relate to my son’s diapers?” He wasn’t being dismissive. He was reaching, genuinely, for any yardstick at all. And that was the problem. There simply wasn’t a shared, standardized way to measure what I was telling him. My experience and his frame of reference had no common language, so the conversation drifted toward wet diapers because that was the only quantity of blood he could picture.

Here is what has changed, and why I think it matters so much. Today, a woman can sit down with a validated questionnaire called the ISTH Bleeding Assessment Tool — the BAT — and turn her bleeding into an actual number. The BAT walks through roughly a dozen sites of bleeding, including menstrual bleeding, and scores both how often each happens and their severity. The tool is built for women, and in adults, a score of six or higher is generally treated as abnormal. My score is well over 30.

What that means in plain terms: Your hematologist no longer has to compare your period to his son’s diapers. The tool does the comparing. What was missing was a common language, and now there is one.

Here is what I wish someone had told me

Your period is data. If you are soaking through protection every hour, passing clots larger than a quarter, bleeding longer than a week, or rearranging your life around the heaviest days, that is not a personality trait nor a weakness. It is information worth bringing to a doctor. It is information worth being stubborn about if the first answer is a shrug and a prescription.

You are allowed to ask, directly: Could this be a bleeding disorder? You are allowed to ask for a referral to a hematologist. And you no longer have to walk in empty-handed. Look up the ISTH-BAT, score yourself before the appointment, and hand a clinician a number instead of an apology. You are allowed to take up that much space.

I spent years believing I was just someone who didn’t handle her period well. The truth was simpler and, in a strange way, kinder, as my body was doing exactly what a body with von Willebrand disease and hemophilia B does. Naming it doesn’t make the bleeding worse.

The bleeding you’ve learned to live with might be the clearest thing your body has been trying to say. I hope you will listen.

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 consult your physician or another qualified healthcare 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.