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With their multisystem involvement, Hypermobility Spectrum Disorders (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS) bring significant burdens and concerns on the patient when it comes to reproductive health and fertility. Past studies have reported an increased prevalence of abnormal bleeding, dysmenorrhea, pelvic pain, preterm labor, spontaneous abortion, and obstetrical outcomes in hEDS. Further, out of 72% of women with a prepubertal diagnosis of hEDS, puberty led to worsening hEDS symptoms in 52% of women. This two-way relationship between EDS/HSD and reproductive health may be explained by the presence of estradiol receptors in various organs, including joints, skin, and cartilage.
Reproductive and sexual health directly impacts quality of life, so it is essential to increase awareness and address the problems through the support of multidisciplinary teams. An EDS team of providers and therapists can help to navigate concerns like pelvic floor dysfunction, pelvic prolapse, low libido, and incontinence issues with the aid of medications, Kegel pelvic floor exercises, sexual health counseling, and gynecologic referrals. In addition, educating and discussing with partners of hEDS/HSD patients can significantly help overcome various hurdles in the EDS journey. In hEDS/HSD patients with menstrual disorders, hormonal contraceptives may be beneficial in relieving symptoms after thorough evaluation.
The key is effective communication and exchange of accurate information in addressing the myths that hover around EDS and sexual health. As sexual health impacts physical and mental health, various strategies such as pelvic floor relaxation, pillows / wedges to support positioning, lubricants, perineal massage, and psychological intervention can positively improve reproductive health and quality of life. Let us promote awareness and create an open space to discuss and positively contribute to the EDS journey.
Author: Mahima Master, MBBS
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