Sexuality in hEDS

While much attention is given to the physical manifestations of hypermobile Ehlers-Danlos (hEDS), its impact on sexuality is also significant but often overlooked. The impacts of hEDS on sexuality can include physical discomfort, emotional challenges, and side effects from medications. Understanding how hEDS affects sexual health is essential for improving quality of life and tailoring appropriate care.

Physical and Psychological Impacts of hEDS on Sexuality

Physical impacts: Causes and Symptoms

• Chronic musculoskeletal pain, a hallmark of hEDS, may worsen during sexual activity due to joint instability, subluxations, or soft tissue injuries

• Subluxations or dislocations can occur during intercourse, triggering acute pain and anxiety about physical harm

• Pelvic floor dysfunction is widespread in hEDS, leading to urinary or fecal incontinence, pelvic organ prolapse, and pelvic pain

• Dyspareunia (pain with intercourse) and vulvodynia (chronic vulvar pain) are especially common, caused by pelvic floor muscle dysfunction, tissue fragility, and comorbid conditions like IBS and endometriosis. In one study of women with hEDS, 43% reported dyspareunia.

• Genital lacerations, scarring, and gynecologic issues such as fibroids or ovarian cysts can contribute to sexual pain.

• Menstrual-related symptoms like dysmenorrhea (painful periods) and menorrhagia (heavy menstrual bleeding) may also affect sexual health, often influenced by hormonal shifts.

• Fatigue affects around 80% of individuals with hEDS and can reduce sexual energy and interest

• Autonomic dysfunction (problems with the body’s automatic functions like heart rate and blood pressure)—including POTS (postural orthostatic tachycardia syndrome)—can lead to dizziness or fainting during sex, further limiting activity.

  
  

Psychological impacts: Causes and Symptoms

• Anxiety, depression, and emotional distress are frequently reported and are strongly associated with reduced libido and avoidance of intimacy.

• Chronic pain and fatigue worsen emotional wellbeing, which in turn intensifies the perception of pain.

• Many individuals with hEDS feel misunderstood in medical settings, which can cause psychological trauma and low self-worth.

• Body image issues due to visible scarring, keloids, or fat distribution changes may lower confidence and impair sexual self-concept.

• Experiences of bullying or overprotection during childhood may disrupt healthy sexual identity development.

• hEDS is often linked to neurodevelopmental conditions (such as ADHD or autism) and psychiatric conditions, complicating sexual functioning.

• Fear of injury, emotional vulnerability, and low self-esteem can impair desire, satisfaction, and relationship intimacy.

Changes Over the Lifespan

• Sexual symptoms often begin in adolescence as hormonal changes and gynecologic symptoms emerge

• In reproductive years, challenges include pelvic floor dysfunction, pain, and complications from pregnancy or childbirth.

• In later adulthood, fatigue, instability, and chronic pelvic floor symptoms may persist or worsen, but some individuals report better psychological adjustment over time.

• Hormonal shifts, including menopause, can further influence symptoms and sexual health.

Theoretical and Hypothesized Effects

• Tissue fragility and joint instability may increase the risk of microtrauma or mucosal tears during intercourse.

• Autonomic dysfunction and fatigue are thought to impair stamina and physical arousal.

• Hormonal fluctuations may affect symptom severity and sexual responsiveness.

• Being dismissed by healthcare providers can disrupt intimacy and sexual confidence.

• Possible links between hEDS and neurodevelopmental conditions may influence sexual development and identity.

Effects of Common hEDS Medications on Sexual Function

Management of Sexual Dysfunction in hEDS

Non-pharmacological approaches

• Cognitive behavioral therapy and other psychological therapies can reduce anxiety, depression, and sexual avoidance.

• Pelvic floor physiotherapy helps with dyspareunia and pain, though adjustments may be needed due to fragile tissues.

• Physical and occupational therapy address pain and mobility issues that interfere with sexual activity.

• Sexual aids like positioning cushions may improve comfort.

• Couples therapy and body image counseling can help when emotional and relational concerns are present.

• Lifestyle changes—such as exercise and weight management—may indirectly improve sexual function.

Pharmacological approaches

• Medications for chronic pain (e.g., duloxetine, tricyclic antidepressants) may help but often have sexual side effects.

• Some antidepressants like bupropion and buspirone are used off-label to counteract sexual dysfunction, but data are limited.

• Vaginal moisturizers and lubricants are first-line treatments for dryness and dyspareunia.

• Hormonal treatments (e.g., estrogen therapy) may benefit postmenopausal women. In the context of hEDS and sexuality, localized vaginal estrogen therapy is often preferred for postmenopausal dyspareunia, because it has a favorable safety profile and effectively treats symptoms with minimal systemic effects.

• Flibanserin and bremelanotide may modestly help with low desire in premenopausal women.

• PDE5 inhibitors (e.g., sildenafil) are effective for erectile dysfunction in men and are sometimes tried for women, though evidence in hEDS is limited.

Clinical Guidelines and Expert Consensus

There are currently no hEDS-specific clinical guidelines or expert consensus statements that provide detailed recommendations for the management of sexual dysfunction in this population. The University of Washington GeneReviews guideline addresses the prevalence and clinical significance of sexual dysfunction in hEDS and recommends routine assessment for dyspareunia and related urogynecologic symptoms, but notes the absence of disease-specific management guidelines. In the absence of hEDS-specific guidelines, the management of sexual dysfunction in this population is necessarily extrapolated from general sexual medicine guidelines and expert consensus statements on the management of sexual dysfunction in chronic illness.

Special Considerations

• Adolescents may face sexual difficulties early due to pain, fatigue, and psychological distress, requiring supportive and preventative care.

• In men with hEDS, sexual dysfunction is likely common and multifactorial, arising from the interplay of chronic pain, joint instability, autonomic dysfunction, psychological distress, and medication side effects. The American Urological Association recommends a comprehensive evaluation and a stepwise approach to management, beginning with lifestyle modification and pharmacotherapy (PDE5 inhibitors), and incorporating psychological and relational interventions as needed.

• Sexual challenges can impact partner relationships, highlighting the need for dyadic approaches that support both partners.

Summary

Sexual dysfunction is a common but underrecognized consequence of hypermobile Ehlers-Danlos syndrome. It arises from a combination of physical symptoms, psychological distress, and side effects of medications used to manage the condition. Addressing these challenges requires a tailored, holistic approach that integrates physical therapy, psychological support, and careful medication review. While evidence for specific treatments in hEDS remains limited, extrapolation from broader chronic illness literature supports many effective strategies. Increasing awareness and research on this topic is essential for improving sexual health and quality of life for those living with hEDS.