Obstetric and gynecologic challenges in women with Ehlers-Danlos syndrome.
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%.


CONCLUSIONS
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.
Division of Reproductive Endocrinology and Infertility, Department of Obstetrics and Gynecology, and Dickson Advanced Analytics, Carolinas Medical Center, Charlotte, North Carolina.
Bradley S
BS
Hurst
Sara S
SS
Lange
Susan M
SM
Kullstam
Rebecca S
RS
Usadi
Michelle L
ML
Matthews
Paul B
PB
Marshburn
Megan A
MA
Templin
Kathryn S
KS
Merriam
D000293:Adolescent; D000328:Adult; D004535:Ehlers-Danlos Syndrome / Q000150:complications*; D005260:Female; D006306:Health Surveys; D006801:Humans; D007247:Infertility, Female / Q000453:epidemiology / Q000209:etiology*; D008599:Menstruation Disturbances / Q000453:epidemiology / Q000209:etiology*; D011247:Pregnancy; D011248:Pregnancy Complications / Q000453:epidemiology / Q000209:etiology*; D015995:Prevalence; D057566:Self Report; D014481:United States; D055815:Young Adult