For decades, bleeding disorders like hemophilia have been widely misunderstood as conditions that primarily affect men. But for many women and girls, the reality looks very different, marked by years of unexplained symptoms, dismissal, and delayed diagnosis.
Recently, one of our hematologists, Dr. Nina Hwang, was featured in the documentary Dismissed | The Untold Story of Women Living with Hemophilia, which highlights the experiences of women who have long been overlooked or misdiagnosed. While awareness is growing, these stories reflect a broader pattern we still see today. It’s a pattern of women’s symptoms not always being recognized for what they are.
At CIBD, we know that earlier diagnosis can make a meaningful difference. But first, we have to understand why delays happen in the first place.
Why Are Women Being Missed?
One of the biggest barriers to diagnosis is rooted in long-standing assumptions about who bleeding disorders affect.
Historically, conditions like hemophilia were thought to only impact men, while women were labeled as “carriers.” As a result, women’s symptoms were often overlooked or not fully evaluated. Even today, that perception can still influence how care is delivered.
As Dr. Hwang shares in the documentary, “It is definitely a very common scenario that we see—that moms come and bring their kids for the diagnosis… not really considering this diagnosis for themselves.”
In many families, the focus is placed on a child (often a son), while a mother’s own history of symptoms goes unexamined. It’s not uncommon for women to only begin connecting the dots after a diagnosis is made within their family.
When Symptoms Are Normalized or Overlooked
Many women experience symptoms of a bleeding disorder without realizing they may be cause for concern. Symptoms of a bleeding disorder in women can include:
- Heavy or prolonged menstrual bleeding
- Bleeding that interferes with daily activities or causes anemia
- Excessive bleeding after childbirth
- Frequent nosebleeds or easy bruising
- Unexpected complications during or after medical or dental procedures
Because some of these experiences, especially heavy periods, are often normalized, they may not immediately raise red flags. In some cases, patients may not feel comfortable bringing them up, or they may be told that what they’re experiencing is typical.
Dr. Hwang shares, “…they have had prolonged bleeding with their childbirth or their heavy menstrual periods. These situations and experiences did not lead to a diagnosis.”
When symptoms are dismissed, minimized, or simply not discussed, opportunities for early diagnosis are missed.
The Impact of Delayed Diagnosis
A delayed diagnosis can affect more than just peace of mind. It can have real implications for a person’s health and quality of life.
Without a clear diagnosis, patients may go without appropriate treatment or preventive care, medical procedures carry unexpected risks, symptoms like fatigue or pain can worsen over time, and patients often feel frustrated or unheard.
In some situations, the risks can be more serious, particularly during major life events like surgery or childbirth.
As Dr. Hwang explains, “For childbirth in someone who has a bleeding disorder, you run the risk of the bleeding not stopping… leading to transfusions or even death in some situations.”
With the right diagnosis and care plan in place, many of these risks can be anticipated and managed. That’s why early recognition is so important.
Gaps in Awareness and Access to Care
Delayed diagnosis reflects broader gaps in awareness and access in women’s health. Some of the challenges women face include:
- Limited awareness that women and girls can have bleeding disorders
- Symptoms being attributed to other causes, rather than being investigated further
- Barriers to specialty care, including access to hematology services
- Stigma around menstrual health, which can make conversations more difficult
- Less research and representation, leading to gaps in clinical understanding
In fact, research has shown that up to 80% of hemophilia clinical trials have historically included only male participants, leaving women significantly underrepresented. This lack of inclusion means we still have important gaps in understanding how bleeding disorders present and should be treated in women.
Supporting Earlier Diagnosis and Better Care
Improving diagnosis for women starts with listening, both to patients and to what their symptoms may be telling us. It also requires a shift in how we think about bleeding disorders. We can move forward by:
- Recognizing that bleeding disorders affect women and girls – not just men
- Taking symptoms seriously, even when they are commonly normalized
- Encouraging open conversations about menstrual and reproductive health
- Considering bleeding disorders earlier in the diagnostic process
- Connecting patients with comprehensive, specialized care when needed
At CIBD, we’re committed to providing care that looks at the full picture, helping patients better understand their symptoms, access the right resources, and feel supported throughout their care journey.
Women’s Health Clinics at CIBD
Because bleeding disorders can uniquely impact menstrual and reproductive health, access to specialized, coordinated care can make a meaningful difference.
At CIBD, our women’s health clinics are designed to support patients across different life stages. SWAG+ (Space for Women & Girls+) focuses on adolescents and individuals who menstruate, while GEMM (Gynecology Evaluation for Menses & Maternity) provides focused care for adult women navigating more complex menstrual and reproductive health concerns.
Blood disorders in people who menstruate can present in ways that are often overlooked, from heavy or prolonged periods to complications during pregnancy or childbirth. These experiences are not always recognized as connected, which can delay diagnosis and care.
Through SWAG+ and GEMM, patients receive multidisciplinary support that brings together hematology and specialized women’s health care, in collaboration with CHOC Adolescent Medicine and UCI OB/GYN. From 2024 to 2025, we saw a 9% increase in SWAG+ patients and a 24% increase in GEMM patients, reflecting continued growth and the importance of these programs in meeting patient needs.
These clinics are designed to create a space where patients feel heard, supported, and better equipped to understand their health. The right care at the right time can make all the difference.
Women’s Health Month & Beyond
Women’s Health Month is an important time to bring awareness to experiences that have too often gone unrecognized. Delayed diagnosis is something we can change with greater awareness, earlier conversations, and a more inclusive approach to care.
If you are concerned about heavy bleeding, one helpful resource is the Self-BAT (Self-Bleeding Assessment Tool), an online questionnaire designed to help identify bleeding symptoms and determine if specialized care may be appropriate.
If your results raise concerns, or if something simply doesn’t feel right, our team at CIBD is here to help. Listening to your body and being heard can make all the difference.