Functional Hypothalamic Amenorrhea : Affected Women’s Perspective on Diagnosis and Treatment

Sammanfattning: ABSTRACT Functional hypothalamic amenorrhea, FHA, is the clinical diagnosis for a woman in whommenstrual periods have been absent for three months or longer and where no other organic ormedical explanation is found. The aim was to explore characteristics and life experiencesamong women showing signs of FHA and to investigate what diagnoses and treatment/advicethey received when seeking medical help. Self-reported data were collected via an onlinesurvey. Descriptive data were presented regarding global representation, education levels,characteristics, life experiences, diagnoses, treatment/advice, treatment satisfaction, recoverysuccess and congruence between undertaken lifestyle changes and treatment/advice.Respondents consisted of 1,035 women from 71 different countries. The results showedcommon characteristics among respondents: the majority reported body appearancedissatisfaction, drive for thinness, high expectations of oneself, anxiety, obsessive behavioursand perfectionism. Life experiences were childhood bullying, loneliness and having a closerelative with mental health issues. Less than half of the participants received the diagnosisFHA and roughly a third did not receive any diagnosis/were told nothing was wrong. One infive were not given any treatment/advice that would help them regain their menstrual period.Ninety-three percent of those who recovered stated that they had gained weight, engaged lessin physical activity and/or undertaken cognitive behavioural therapy. Seventy-two percentwere dissatisfied with the treatment/advice they were given. In conclusion, the results fromthis study point to FHA as an underdiagnosed/misdiagnosed, neglected and mistreatedmedical condition and public health issue affecting women globally.