Fuster Emily, Mirmosayyeb Omid, Blitshteyn Svetlana
Department of Neurology, University of Buffalo Jacobs School of Medicine and Biomedical Sciences, Buffalo, NY, USA.
Dysautonomia Clinic, Williamsville, NY, USA.
Rheumatol Adv Pract. 2025 Feb 27;9(2):rkaf023. doi: 10.1093/rap/rkaf023. eCollection 2025.
Hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (h-EDS) are connective tissue disorders associated with joint hypermobility, pain, fatigue and autonomic dysfunction. We sought to assess sexual function in women with h-EDS/HSD.
In this cross-sectional community-based case-control study, women with h-EDS/HSD completed the following online questionnaires: Female Sexual Function Index (FSFI), 31-item Composite Autonomic Symptom Score (COMPASS-31), Beck Depression Inventory-II (BDI-II) and an additional short form with questions pertaining to comorbidities and sexual activity. Scores were compared with those of healthy female controls.
A total of 84 women with h-EDS/HSD [mean age 37.1 years (s.d. 8.4)] and 75 healthy women [mean age 29.79 years (s.d. 5.38)] completed the questionnaires. Of these, 75% were diagnosed with h-EDS, 25% with HSD and 58% had concurrent postural orthostatic tachycardia syndrome. A majority of women with h-EDS/HSD (52%) did not engage in any sexual activity, and only 25% reported having sexual intercourse with a partner in the past 6 months. The mean COMPASS-31 score was 51.5 (s.d. 13.8), mean BDI-II score was 24.6 (s.d. 11.4) and mean FSFI score was 15.3 (s.d. 7.9) in the patient group. Compared with healthy controls, women with h-EDS/HSD had decreased FSFI scores in the subdomains of desire, arousal, lubrication, orgasm and sexual satisfaction. Neither BDI-II nor COMPASS-31 scores were predictive of the FSFI score.
Compared with healthy women, we found significant sexual dysfunction in women with h-EDS/HSD, which did not correlate with depressive or autonomic symptoms in this cohort. Given its health implications, sexual dysfunction represents a significant unmet need that calls for development of targeted diagnostic and therapeutic approaches in the care of women with h-EDS/HSD.
活动过度谱系障碍（HSD）和活动过度型埃勒斯-当洛综合征（h-EDS）是与关节活动过度、疼痛、疲劳及自主神经功能障碍相关的结缔组织疾病。我们试图评估h-EDS/HSD女性的性功能。
在这项基于社区的横断面病例对照研究中，h-EDS/HSD女性完成了以下在线问卷：女性性功能指数（FSFI）、31项自主神经症状综合评分（COMPASS-31）、贝克抑郁量表第二版（BDI-II）以及一份关于合并症和性活动的附加简表。将得分与健康女性对照者的得分进行比较。
共有84名h-EDS/HSD女性[平均年龄37.1岁（标准差8.4）]和75名健康女性[平均年龄29.79岁（标准差5.38）]完成了问卷。其中，75%被诊断为h-EDS，25%为HSD，58%同时患有体位性直立性心动过速综合征。大多数h-EDS/HSD女性（52%）未进行任何性活动，只有25%报告在过去6个月内与伴侣有过性行为。患者组的COMPASS-31平均得分为51.5（标准差13.8），BDI-II平均得分为24.6（标准差11.4），FSFI平均得分为15.3（标准差7.9）。与健康对照者相比，h-EDS/HSD女性在性欲、性唤起、润滑、性高潮和性满意度等子领域的FSFI得分降低。BDI-II和COMPASS-31得分均不能预测FSFI得分。
与健康女性相比，我们发现h-EDS/HSD女性存在明显的性功能障碍，且在该队列中与抑郁或自主神经症状无关。鉴于其对健康的影响，性功能障碍是一项重大的未满足需求，需要开发针对性的诊断和治疗方法来护理h-EDS/HSD女性。
