When you hear the term “bleeding disorder,” you probably think of hemophilia, an inherited condition that can lead to dramatic bleeding from the smallest of wounds. Hemophilia, also known as “the royal disease” because it afflicted so many of Queen Victoria’s descendants, has three types — A, B and C, all caused by the degree to which clotting factors are absent in the blood. While men are diagnosed with bleeding disorders via regular nosebleeds and intense post-surgery bleeds, they’re more complicated to diagnose in women because, well, a lot of us bleed regularly and significantly.
“Every time I’d tell a doctor that my periods were terrible, they’d say, ‘Everyone thinks their periods are terrible,'” Ashley says. It wasn’t until 2012 when she began trying to get pregnant that she learned the cause of her hellacious periods: a genetic bleeding disorder called factor XI deficiency, otherwise known as Rosenthal syndrome or hemophilia C.
FXI interferes with clotting and is a shortage of the protein that traps platelets and makes sure the clot stays in place. Ashley’s other symptoms include nosebleeds, bruising easily and bleeding gums. During her pregnancy, due to the risk of bleeding, Ashley was given infusions of fresh and frozen plasma. As for her periods, she finds great power in knowing that her period is terrible for a reason.
“It’s super-frustrating, but now there’s a why, and I can get medication to slow the bleeding,” she explains.
FXI is one kind of bleeding disorder in a category known as “rare factor deficiencies” because of the clotting factors that are absent, creating a longer than normal bleed. Rare platelet deficiencies, which are also genetic or acquired at birth, occur when platelets don’t do their job (to form a clot).
The most common bleeding disorder is von Willebrand disease according to the National Hemophilia Foundation. The disease, also hereditary, occurs when there’s either a deficiency of a protein in the blood, known as von Willebrand factor or vWF, or when what’s there doesn’t work. Folks usually aren’t diagnosed with vWD because the symptoms are often mild except in certain circumstances.
Anna was diagnosed with vWD in 1994 after hemorrhaging multiple times during various surgeries. Now, she says, “I insure that all procedures are properly handled to prepare for surgery,” which means she receives an infusion of Factor 8, a protein that you need to clot blood. “What a difference that treatment has made.”
VWD is common in teens and young women, who are often diagnosed when they visit the doctor complaining of heavy periods.
What constitutes a heavy period, though? How do you know if your level of bleeding is normal?
According to Dr. Veronica Flood, a pediatric hematologist-oncologist in Wisconsin, if your periods lasts longer than seven days (menorrhagia), you need to change your pad/tampon/empty your menstrual cup more often than every two hours, and you’re iron deficient because of your period, you should see a doctor. Genetics also plays a role in vWD, so when girls are diagnosed (it takes a series of blood tests to arrive at the vWD conclusion), usually their mothers learn they have it as well.
If you do have a bleeding disorder, you have more options for managing heavy periods, but Flood says most of her clients do well on birth control pills. Other ways to manage vWD include desmopressin, an inhalable synthetic hormone that stimulates your body into producing more of the von Willebrand factor that’s already in your body, clot-stabilizing medications and replacement therapies like those Anna and Ashley use.
“If people are worried, they should talk to someone,” Flood says. “People think, oh, it’s a woman’s issue, just deal with it, but I don’t want people to think this is a taboo subject. Nobody should have to suffer if they don’t have to.”
Originally published on HelloFlo.
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