Retrospective study finds higher sexual problem rates in females with hEDS versus chronic pain controls

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Frontiers in Medicine Published April 5, 2026 Medically reviewed April 26, 2026 DOI ↗ By Dr. Sofia Müller, MD · Lifespan & Whole-Person Care

Key Takeaway

Consider screening female hEDS patients for sexual problems, but note evidence is from a retrospective, single-center study.

This retrospective cohort study compared self-reported sexual problems in patients with hypermobile Ehlers–Danlos syndrome (hEDS) or hypermobility spectrum disorders (HSD) against chronic pain controls without hypermobility. The study included 1407 patients (976 HSD, 240 hEDS, 191 controls) from a single EDS clinic, with 90% self-identifying as White, non-Hispanic females. Patients were diagnosed according to the 2017 criteria, and controls had chronic pain but no hypermobility diagnosis.

For females with hEDS, rates of several sexual problems were significantly higher than in chronic pain controls. Specifically, 69% reported sexual problems (p=0.018), 41% reported problems with sexual interest (p=0.023), 45% reported sexual pain (p=0.006), and 34% reported orgasm difficulty (p=0.022). For patients diagnosed with HSD, both males and females reported more problems with sexual interest compared to controls (females p=0.019, males p=0.018), but absolute numbers for HSD groups were not reported for most outcomes.

Safety and tolerability data were not reported. The study has several key limitations: its exploratory, retrospective design means it can report associations but not establish causation. The small number of male participants limits conclusions that can be drawn for them. Furthermore, findings for HSD patients were largely limited to problems with sexual interest, with most other sexual problem outcomes not showing significant differences from controls.

For clinical practice, these findings suggest clinicians should be aware that sexual problems may be more prevalent among female hEDS patients than among other patients with chronic pain. However, the retrospective, single-center nature of the evidence and the lack of generalizability to male patients or to most outcomes in HSD patients mean these results should be interpreted as preliminary. They highlight an area for further prospective investigation rather than providing definitive guidance.

Study Details

Study typeCohort

EvidenceLevel 3

PublishedApr 2026

View Original Abstract ↓

BackgroundHypermobile Ehlers–Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSDs) are heritable connective tissue disorders characterized by widespread fragile soft connective tissue affecting the skin, ligaments, joints, vasculature, and internal organs. Although hEDS and HSD are autosomal-dominant conditions and would be expected to display a 1:1 sex ratio, studies report higher prevalence in women.ObjectivesThe purpose of this exploratory study was to determine whether self-reported sexual problems differed between females and males diagnosed with hEDS or HSD compared with controls with chronic pain but no hypermobility.MethodsIn this exploratory retrospective study, we examined 1,407 patients diagnosed with hEDS or HSD according to the 2017 diagnostic criteria for eight indicators of sexual problems based on a validated screening tool.ResultsPatients in each diagnosis primarily self-reported as White, non-Hispanic females (90%). Of the 1,407 patients who attended the EDS Clinic, 976 (69%) were diagnosed with HSD, 240 (17%) with hEDS, and 191 (14%) were chronic pain controls with neither diagnosis. For HSD, 937 (96%) were females vs. 39 (4%) males (24:1 females to males), while for hEDS, 210 (88%) were females vs. 30 (13%) males (7:1 females to males), and controls were 165 (86%) females vs. 26 (14%) males (6:1 females to males). Females with hEDS reported significantly higher rates of sexual issues than chronic pain controls, including sexual problems (69%, p = 0.018), problems with sexual interest (41%, p = 0.023), sexual pain (45%, p = 0.006), and orgasm difficulty (34%, p = 0.022) compared with males with hEDS or males or females with HSD. In contrast, males diagnosed with hEDS did not report any sexual problems over controls, and males and females diagnosed with HSD reported only one issue—more problems with sexual interest—compared with controls (females p = 0.019, males p = 0.018). However, the small number of males in this study limits conclusions that can be drawn for them.ConclusionsThis study is unique because we examine sex differences in sexual problems in patients with hEDS and HSD. Our findings indicate a higher percentage of sexual problems in females with hEDS than chronic pain controls without hypermobility, but this was not observed for females with HSD.

Retrospective study finds higher sexual problem rates in females with hEDS versus chronic pain controls

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Retrospective study finds higher sexual problem rates in females with hEDS versus chronic pain controls

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