Characterization of Vulvodynia and Ehlers-Danlos Syndrome (EDS) Pain in Women

项目摘要/摘要 埃勒斯-丹洛斯综合征(EDS)是一种遗传性结缔组织疾病，女性的发病率高达77%，令人担忧 性功能障碍(性交时的阴道疼痛)的比率在全球范围内为20%。外阴疼痛(慢性 外阴疼痛)是导致性交困难的原因之一。外阴疼痛没有已知的病因；它会摧毁女性的 生命，剥夺了他们发生性行为的能力，并破坏了他们的亲密关系。我们的 研究小组发现，患有EDS(N=1171)的女性主诉外阴疼痛症状，并可能 外阴痛的患病率是美国的6倍，为51%，而美国人口的患病率为8%。EDS会影响估计的 每5000人中就有1人，男女比例约为9：1。90%的EDS患者 有令人衰弱的慢性疼痛，近40%的人因疼痛缓解不足而伤残或请病假。EDS 影响结缔组织，导致日常正常活动中经常出现奇怪和虚弱的损伤 生活；比如，刷头导致的肩膀脱臼，走下楼梯扭伤脚踝， 或吸尘器时髋关节脱位。超过60%的EDS患者使用阿片类药物来缓解痛苦。那里 缺乏对EDS疼痛的研究，也没有关于女性外阴疼痛的研究 埃兹。我们研究的目的是确定EDS疼痛和外阴疼痛的特征，并确定疼痛的表型。 我们将在一项横断面便利性样本在线调查中检查全身性疼痛和外阴疼痛 通过外阴疼痛或EDS Facebook支持群组中的链接访问。我们将招募825名妇女作为样本 无外阴痛EDS组275例，有外阴痛EDS组275例，有外阴痛275例 组)。疼痛将使用PAINReportIt®计算机化麦吉尔疼痛问卷(MPQ)进行测量。 PAIN报告它具体测量疼痛感觉维度的4个领域(位置、强度、质量、 和图案)。对患有EDS和/或外阴疼痛的女性的外阴疼痛进行特征描述将有助于识别 全身性和外阴疼痛的表型和并存的情况模式。结果将允许有针对性 治疗方法有待开发，以减轻患有EDS和外阴疼痛的妇女的痛苦。

Project Summary/Abstract Women with Ehlers-Danlos syndrome (EDS), a genetic connective tissue disorder, have an alarming 77% rate of dyspareunia (vaginal pain during sexual intercourse) compared to 20% globally. Vulvodynia (chronic vulvar pain) is one of the causes of dyspareunia. Vulvodynia has no known etiology; it decimates women’s lives, robbing them of their ability to have sexual intercourse and shatters their intimate relationships. Our research team found that women with EDS (N=1171) complained of vulvodynia symptoms and may have over six times the prevalence of vulvodynia, 51%, compared to 8% in the U.S. population. EDS affects an estimated 1 in 5,000 individuals with a female to male ratio of approximately 9:1. Ninety percent of patients with EDS have debilitating chronic pain, with nearly 40% taking disability or sick leave due to inadequate pain relief. EDS affects connective tissue resulting in frequent strange and debilitating injuries from normal activities of daily living; for example, shoulder dislocation from brushing one’s hair, spraining an ankle from walking down stairs, or hip dislocation while vacuuming. Over 60% of individuals with EDS use opioids to ease their suffering. There is a paucity of research characterizing EDS pain and no research characterizing vulvodynia in women with EDS. The purpose of our study is to characterize EDS pain and vulvodynia, and to determine pain phenotypes. We will examine generalized pain and vulvar pain in a cross-sectional convenience sample online survey accessed via links in vulvodynia or EDS Facebook support groups. We will recruit a sample of 825 women (275 in the EDS group without vulvodynia, 275 in the EDS group with vulvodynia, and 275 in the vulvodynia group). Pain will be measured with PAINReportIt® a computerized McGill Pain Questionnaire (MPQ). PAINReportIt specifically measures the 4 domains of the sensory dimension of pain (location, intensity, quality, and pattern). Characterization of vulvar pain in women with EDS and/or vulvodynia will allow for identification of generalized and vulvar pain phenotypes and comorbid condition patterns. Results will allow for targeted treatment methods to be developed to ease the suffering of women with EDS and vulvodynia.