Nikki Angeles, 32, of Coram, New York, was 16 when she was finally diagnosed with von Willebrand disease (VWD). That was five years after she started having abnormally heavy periods, which caused her to miss almost two weeks of school every month.
“I didn’t understand what was happening, and neither did my mother.
I didn’t know what it meant or that it was abnormal,” Angeles says. She never knew how to talk to her doctors about it, and none ever brought it up with her.
Up to 30% of women report heavy menstrual bleeding at some point in their reproductive lives, and studies show that they frequently delay seeking help. As Angeles discovered, heavy menstrual bleeding is often not recognized as abnormal, partly because of the stigma surrounding menstrual periods, leaving women with bleeding disorders to struggle unnecessarily on their own.
Change Is in the Air
Progress is being made, says Maureen Baldwin, M.D., MPH, an associate professor of obstetrics and gynecology at Oregon Health & Science University. “In some states, schools are required to have menstrual products in the bathrooms for free. There is also some legislation being pushed through in some states.” (The website period.org has a catalog of these advocacy efforts.)
Patti Williford, a chapter advancement specialist with the National Bleeding Disorders Foundation (NBDF), agrees that the conversation about periods, which was hush-hush for so long, is finally opening up.
“Over the past 10 years, I’ve seen it become an important topic of conversation in the bleeding disorders community and in society as a whole,” Williford says. “Women, girls, and people with the potential to menstruate (WGPPM) are more openly having these conversations, as are people who don’t have the potential to menstruate.”
To that end, NBDF has held period parties, where WGPPM can get support and information.
“It’s a great place for people to come and share their personal experiences, gain a better understanding of the issues faced by WGPPM, and learn how they can get involved to help solve these problems. It’s a very open and nonjudgmental space,” Williford says.
What You Can Do
To continue the progress, Angeles has established an Instagram account
to spread the word about period stigma and bleeding disorders awareness. She urges other WGPPM who’ve been diagnosed with a bleeding disorder to:
- Talk about periods openly and without shame.
- Don’t be afraid to seek out other opinions. “I have noticed that the first conversations for heavy periods are around either birth control or hysterectomy, which takes away your right to consider other options,” she says.
- If your hematologist or OB/GYN won’t listen to you, find another one who will.
- Join a community of other WGPPM with bleeding disorders who can support and validate your experiences.
Most important, Angeles says: “Educate yourself so you can advocate for yourself. No one knows what is going on but you. It makes you successful in your own diagnosis and your own life.”
Visit Victoryforwomen.org, which celebrates the voices of women in the bleeding disorders community.
Visit BetterYouKnow.org, a bilingual initiative created to improve the awareness of signs and symptoms of bleeding disorders in women, girls, and people who have the potential to menstruate, and steps to seek out a diagnosis.