Rett Syndrome and Menstruation

Objective: Describe the experience that girls with Rett syndrome have with menstruation including menstrual hygiene, dysmenorrhea, premenstrual syndrome (PMS), and attempts at treatment. Design: Anonymous web-based survey. Setting: Convenience sample recruited from Rett syndrome LISTSERV in July of 2009. Participants: Mothers of girls with Rett syndrome between the ages of 10-25 who have had at least one menses. Main Outcome Measures: Prevalence, frequency, and severity of dysmenorrhea and PMS; hygiene concerns; and treatments attempts and perceived effectiveness. Results: Dysmenorrhea and PMS are common problems among young women with Rett syndrome. Despite their frequency and severity they do not routinely limit activities. Multiple treatment attempts are common. Hormonal contraception is used mostly for menstrual cycle control with oral contraceptive pills the most commonly used method. Conclusions: Young women with Rett syndrome have standard symptoms of dysmenorrhea and PMS as well as autism spectrum specific PMS symptoms. Hormonal contraception is commonly used for menstrual management.