Obstetric and gynecologic challenges in women with ehlers-danlos syndrome

Bradley S. Hurst, Sara S. Lange, Susan M. Kullstam, Rebecca S. Usadi, Michelle L. Matthews, Paul B. Marshburn, Megan A. Templin, Kathryn S. Merriam

Research output: Contribution to journalArticlepeer-review

28 Scopus citations

Abstract

OBJECTIVE:: To determine how often women with Ehlers-Danlos syndrome experience obstetric and gynecologic issues both compared with the general population and within the three most common subtypes of Ehlers-Danlos syndrome. METHODS:: An anonymous, prospective, online questionnaire in English was posted to the Ehlers-Danlos National Foundation web site (http://ednf.org). RESULTS:: Of the 1,769 of those who completed the survey, 1,225 reported a typed diagnosis of Ehlers-Danlos syndrome. Further stratification to the three most common types and reproductive-aged women (n=775) allowed conclusions to be made about differences in rates of obstetric complications and gynecologic dysfunction compared with the general population and between types of Ehlers-Danlos syndrome. Rates of obstetric outcomes for women who reported at least one pregnancy included term pregnancy in 69.7%, preterm birth in 25.2%, spontaneous abortion in 57.2%, and ectopic pregnancy in 5.1%. Infertility was reported by 44.1% of survey respondents. Normal menstrual cycles were reported by only 32.8% with intermenstrual bleeding occurring in 18.6%. Heavy menstrual bleeding was reported by 32.9% survey participants. Gynecologic pain reported included dysmenorrhea by 92.5% and dyspareunia by 77.0%. CONCLUSION:: There is a much greater prevalence of obstetric and gynecologic issues reported by women with Ehlers-Danlos syndrome than in the general population. Additionally, rates differed significantly among the three most common types of Ehlers-Danlos syndrome with vascular type having the highest rates of adverse pregnancy outcomes and menstrual abnormalities. Physician providers should be aware of these challenges and should counsel patients with Ehlers-Danlos syndrome about relevant options and risks. LEVEL OF EVIDENCE:: III

Original languageEnglish (US)
Pages (from-to)506-513
Number of pages8
JournalObstetrics and gynecology
Volume123
Issue number3
DOIs
StatePublished - 2014
Externally publishedYes

ASJC Scopus subject areas

  • Obstetrics and Gynecology

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