CO-74 | WHAT WOMEN ARE NOT ASKED A MODEL OF CARE FOR WOMEN AND GIRLS WITH BLEEDING DISORDERS

S. Pancetti, A.C. Ferrini, E. Magnani, P. Pedrazzi, C. Biasoli | Osp. M.Bufalini, Cesena, Italy

Background and Aims. In modern Western history, menstrual health was kept outside public discussion and managed through discretion and concealment. Although public discussion has widened, menstrual-product advertising has often portrayed menstruation as a matter of hygiene, freshness, confidence, and control, with limited attention to heavy bleeding, pain, or functional impairment. For women with inherited bleeding disorders, this framing may make pathological bleeding harder to name and recognize. Heavy menstrual bleeding (HMB) and other symptoms are often dismissed as "normal," "natural," or “part of being a woman." Women with hemophilia or symptomatic carrier status, von Willebrand disease, and rare coagulation factor deficiencies may remain unheard, underdiagnosed, and inadequately supported. We aimed to describe the rationale and design of “Spazio Rosa," a dedicated multidisciplinary pathway for women followed at the Bleeding and Thrombotic Disorders Clinic, Bufalini Hospital.
Materials and Methods. During routine outpatient consultations, we examined clinical and psychosocial concerns reported by women with inherited bleeding disorders. This service-development analysis focused on menstrual bleeding, medical history, daily-life limitations, reproductive concerns, and perceived gaps in care.
Results. Three needs were identified. First, the initial clinical task was to break the menstrual silence: patients needed a setting in which HMP, pain, leakage anxiety, and embarrassment could be named before they could be assessed. HMB was often normalized, minimized, or compared with the experience of “normal” women, although it may be the first clinical clue to an underlying inherited bleeding disorder. This could weaken symptom legitimacy and delay referral and diagnostic assessment. Second, the burden extended beyond blood loss, involving fatigue, anemia, pain, restrictions in daily life, and difficulties with sexuality and reproductive planning. Third, patients often described fragmented care and feeling unheard, with limited integration among specialists.
Conclusions. HMB in women with inherited bleeding disorders should not be reduced to ordinary menstrual variation; it is often a symptom of unmet care. The central gap is not blood loss alone, but the persistent failure to elicit, validate, and address women’s bleeding-related concerns. Embarrassment, normalization of suffering, and fragmented care may leave women without timely diagnosis or adequate support. “Spazio Rosa” was conceived to address these concerns through structured assessment, individualized management, and integrated hemostatic, obstetric-gynecological, and psychological care. Future evaluation should assess patient-reported outcomes, unplanned healthcare use, and school/work absence.