Women's experiences of menopause in an online MS cohort: A case series

•We describe associations between menopause and MS reported by patients using an online platform.•Some MS symptoms worsened; some overlapped with menopause symptoms.•These qualitative responses may generate hypotheses testable in clinical cohorts.

BackgroundMany women with multiple sclerosis (MS) are postmenopausal. Previously reported findings from an online MS cohort suggested that earlier, surgical menopause may be associated with higher patient-reported MS severity scores.ObjectiveTo explore experiences of menopause in a series of MS women responding to a reproductive survey from an online research platform, PatientsLikeMe (PLM).MethodsThe free-text responses from a detailed reproductive history survey deployed to PLM members were analyzed using grounded theory approach.ResultsOf the 208 free text responses, 127 responses related to menopause. Five themes emerged: (1) perimenopausal onset of MS symptoms, (2) overlap of MS and menopausal symptoms, (3) MS exacerbations and pseudo-exacerbations triggered by hot flashes, (4) escalation of disease course after menopause, including increasing fatigue, cognitive disturbance, and other symptoms; and (5) effect of HRT on MS symptoms. Some women reported no effects of menopause or HRT.ConclusionGiven an aging population and a median age of individuals currently living with MS very close to menopausal age in many cohorts, there is a pressing need to understand the impact of menopause on MS course. Qualitative responses in this study illustrated several specific themes that require quantitative testing in clinic-based cohorts.