By Danielle Nance, MD
Bleeding symptoms in women have been documented since ancient times and, in modern literature, recognized since the early 1900s.
Women with a genetic mutation for hemophilia have a 40-60% chance of having bleeding episodes during their lifetime requiring treatment and an 80% chance of having heavy menstrual bleeding. Due to X chromosome inactivation, one normal X chromosome is not always enough to produce a full amount of factor.
Even in the same family, the severity of bleeding symptoms in women varies a lot because of X chromosome inactivation, and we know now that bleeding symptoms don’t correlate with factor levels the same way they do in men. Treating bleeding symptoms in women when their factor levels are 30-50% is not always reimbursed by insurance. This can be confusing to treating physicians who were taught to treat based on “the numbers.” Treatment with intravenous medication is seen as invasive and therefore seen as “too difficult” or too expensive to use unless the bleeding is severe.
In men, even a minor bleed is no longer tolerated. Bleeding symptoms in women are often minimized or even dismissed by medical providers. As we understand more about bleeding symptoms and access to medical treatment becomes more widespread, more and more women are being offered treatment for their bleeding symptoms.
Why should any bleeding be endured in women? Women have the increased burden of bleeding from their ovaries, uterus and reproductive organs during pregnancy, delivery and postpartum.
This issue is dedicated to women who bleed and celebrates the stories of those who have courageously talked about their personal symptoms and challenges. As women, we can help improve care for all by continuing to report bleeding symptoms and insisting on getting imaging with CT scans, MRIs, and ultrasounds to document pain and find out if the discomfort and swelling are from bleeding.
As a physician who treats women with bleeding disorders, I ask that each woman keep a calendar and write down symptoms of bleeding, especially the ones that disrupt home, work and leisure activities. Bring the calendar with you to your clinic appointment. If treatment is refused, be brave enough to ask why and ask for more studies so you can learn about your body and how to better care for yourself. Not all pain is from a bleed, and not all pain needs to be treated. Pain provides a signal for investigation. The more we know about symptoms, the better we can work through them towards better health.
May joy be with you in your journey.
ABOUT THE AUTHOR
Dr. Danielle Nance is a hematologist at Banner MD Anderson Cancer Center in Gilbert, Arizona. As a physician of more than 17 years, Dr. Nance shares, “I seek to bring accessible, expert care to each of my patients. I believe in advocacy for patients with rare diseases, access to care and insurance, and improving the patient experience.”
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