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Rett syndrome and menstruation.

Amy Hamilton1, Michael P Marshal2, Gina S Sucato3

  • 1University Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA.

Journal of Pediatric and Adolescent Gynecology
|December 31, 2011
PubMed
Summary

Girls with Rett syndrome commonly experience painful periods (dysmenorrhea) and premenstrual syndrome (PMS). Hormonal contraception is frequently used for managing their menstrual cycles.

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Area of Science:

  • Neurology
  • Pediatrics
  • Women's Health

Background:

  • Rett syndrome is a rare neurodevelopmental disorder affecting girls.
  • Menstruation in girls with Rett syndrome presents unique challenges.
  • Understanding menstrual experiences is crucial for comprehensive care.

Purpose of the Study:

  • To describe the menstrual experiences of girls with Rett syndrome.
  • To investigate menstrual hygiene, dysmenorrhea, and premenstrual syndrome (PMS).
  • To document treatment attempts and their effectiveness.

Main Methods:

  • Anonymous web-based survey.
  • Recruited mothers of girls with Rett syndrome (ages 10-25) with at least one menses.
  • Assessed prevalence, frequency, and severity of dysmenorrhea and PMS, hygiene concerns, and treatments.

Main Results:

  • Dysmenorrhea and PMS are prevalent and often severe in young women with Rett syndrome.
  • Despite severity, symptoms did not routinely limit daily activities.
  • Hormonal contraception, particularly oral contraceptive pills, is commonly used for menstrual cycle control.

Conclusions:

  • Young women with Rett syndrome experience typical dysmenorrhea and PMS symptoms.
  • Autism spectrum-specific PMS symptoms are also noted.
  • Hormonal contraception is a frequent choice for menstrual management in this population.