For many women and girls with bleeding disorders, getting a diagnosis can take years, leaving them to suffer unnecessarily with debilitating symptoms. Heavy menstrual bleeding is often dismissed — both inside and outside the medical community — as “just part of being a woman.”
Delayed diagnoses can happen for several reasons, explains Magdalena Lewandowska, M.D., adult hematologist and associate medical director at the Indiana Hemophilia & Thrombosis Center.
One reason is that women and girls may not recognize that their symptoms are unusual, especially when multiple family members experience them.
“What is considered normal within families can provide a different frame of reference for women who are menstruating,” Lewandowska says. “If your mom, all of your sisters, and your grandma all had periods that lasted 10 days and had a really heavy flow, you might feel that is normal for you.”
Also, many health care providers don’t know a lot about bleeding disorders and may not ask the right questions about menstrual bleeding, Lewandowska says.
“Menstrual bleeding is physiological,” she says. “I think that we have opportunities to improve our understanding of what’s normal and what’s not.”
A Clinic Built Around the Gaps in Bleeding Disorders Care
Across the country, a growing number of hemophilia treatment centers (HTCs) are working to improve understanding by developing specialized clinics for women and girls with bleeding disorders. These clinics aim to bring hematology, gynecology, and other disciplines together to reduce barriers to diagnosis, coordinate treatment, and support people throughout different life stages.
“There are a lot of adolescent girls who are beginning their journey of menstruation, and we’re seeing delays in diagnosis,” Lewandowska says. “If we can create a clinic where girls can come for evaluation of a possible bleeding disorder in the setting of heavy menstrual bleeding and get treatment for it at the same time, it’s kind of like a one-stop shop.”
In 2016, the Indiana Hemophilia & Thrombosis Center launched a clinic for adolescent girls under the leadership of pediatric hematologist Sweta Gupta, M.D. In 2020, the HTC opened an adult counterpart to the pediatric clinic, resulting in a combined effort called the Go+ Clinic.
“When women turn 18,” Lewandowska says, “their bleeding disorders and their heavy menstrual bleeding don’t magically go away.”
When she thinks about the GO+ Clinic and who it benefits, Lewandowska is reminded of one young woman with von Willebrand disease whose severe menstrual bleeding repeatedly led to emergency room visits and dangerously low hemoglobin levels. Without timely access to a gynecologist, the woman’s care became fragmented, highlighting the need for a more coordinated approach.
“What we created is very special,” she says. “Our center really is a lifespan clinic.”
Rather than focusing on a single stage of life, specialty clinics like these are designed to help women navigate changing health needs over time, which includes more than heavy menstrual bleeding.
“For example, there is very little information on menopause for women with bleeding and blood disorders,” she says. “So, for diagnoses where someone may have increased clotting risk or cardiovascular risk, we’re weighing the pros and cons of individual therapies while also not ignoring the symptoms.”
Treating the Whole Patient, Not Just the Bleeding
A great strength of multidisciplinary clinics isn’t simply having multiple specialists available. It’s the collaboration among them.
“Sometimes the most important part is the conversation that we all have together,” Lewandowska says. “There are occasions when we’re both in the same room with the patient … to make sure that everyone is comfortable with the plan.”
That collaboration allows hematologists and gynecologists to consider the benefits and risks of different treatment options. Care might involve combining therapies to control bleeding while also addressing gynecologic concerns. Guidance may also be needed before a procedure or in managing symptoms during menopause.
Women and girls clinics also recognize that care extends beyond a single appointment. Nurse coordinators help track follow-up, connect patients with educational resources, and provide ongoing support. The clinic can serve as a bridge until a patient establishes care with a local gynecologist, or it can provide additional expertise when previous treatments haven’t been successful.
“We try to be as collegial and collaborative as we can,” Lewandowska says, “to ultimately improve patient outcomes.”
The Goal: Specialized Care Inside and Outside Dedicated Clinics
Women who have never been evaluated for unusually heavy periods, or whose symptoms remain uncontrolled, or who face reproductive health decisions all may benefit from specialized care, Lewandowska says. Receiving an accurate diagnosis enables care teams to develop individualized treatment plans that prepare for future surgeries, procedures, and other medical needs.
For people who don’t have access to a dedicated women and girls clinic, Lewandowska encourages self-advocacy. If your symptoms aren’t being taken seriously or your care isn’t meeting your needs, it’s appropriate to seek another opinion. Patient advocacy organizations such as the National Bleeding Disorders Foundation can help connect you with reliable information and resources.
“There is a large population of individuals who have felt neglected and dismissed by the medical community, and there is a big gap in not only being inclusive of women and girls, but actively working toward including them,” Lewandowska says.
“In the last 15 to 20 years, we’ve made great strides forward, and there is also a lot of room for improvement. We should be reaching out and trying to engage our patients to rebuild that trust.”