SAT-139 - Perceptions of Functional Hypothalamic Amenorrhea and Barriers to Care: Data from the International Registry of Very Early Estrogen Loss and Anovulation

Introduction: Functional hypothalamic amenorrhea (FHA) is a common cause of secondary amenorrhea, usually due to insufficient food intake, excessive exercise, and/or psychosocial stress. FHA is underdiagnosed and little is known about patient experiences and challenges related to diagnosis and treatment. The primary aim of this study was to evaluate experiences and perceptions of women with FHA enrolled in the international online Registry of Very Early Estrogen Loss and Anovulation (REVEAL).

Methods: Women aged 18–40 years with ≥3 months of amenorrhea were eligible to enroll in the registry. FHA was defined as amenorrhea with estradiol < 50 pg/mL, FSH and LH < 10 mIU/L, and LH:FSH ratio < 1, excluding other causes of amenorrhea. Diagnosis was confirmed by a physician and/or reproductive hormone testing. If diagnosis and lab values were unavailable, mail-out kits were analyzed. Participants completed self-reported questionnaires online to assess their experience with health care providers and their understanding of the condition.

Results: Among the first 100 participants in the registry the mean age was 27.6 (SD 5.1) years, and mean BMI 20.2 (3.1) kg/m² across 18 countries. Median duration of amenorrhea was 20 months (IQR 5–58). Perceived causes of FHA included disordered eating (79%), overexercising (76%), and stress (66%). Other perceived causes included alcohol use, COVID vaccine booster, lack of sleep, and hyperthyroidism. Health care professional (HCP) evaluation was sought by 95%, although only 13% of those felt their HCP had sufficient knowledge of FHA. Among those who sought care, recommended evaluations included blood tests (90/95), pelvic ultrasound (63/95), brain MRI (25/95), and progesterone challenge (48/95). FHA was diagnosed in 65% of participants. Alternative diagnoses prior to the recognition of FHA included polycystic ovary syndrome (10/95), hyperprolactinemia (2/95), thyroid dysfunction (2/95), or other diagnoses (16/95). Provider-recommended treatments included increased caloric intake (58%), reduced exercise (46%), psychological referral (18%), oral contraceptives (53%), intrauterine device placement (2%), and other treatments (22%).

Conclusion: Results from this registry demonstrate persistent gaps in diagnosis, HCP knowledge, and access to evidence-based care among women with FHA. Few women perceived their providers as knowledgeable on FHA, and many received alternative diagnoses. These findings highlight the need for improved education, standardized diagnostic approaches, and multidisciplinary management of FHA.

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