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

项目概要/摘要 患有Ehlers-Danlos综合征（EDS）的女性，一种遗传性结缔组织疾病， 性交困难（性交时阴道疼痛）的发生率，而全球为20%。外阴痛（慢性 外阴疼痛）是性交困难的原因之一。外阴疼痛没有已知的病因;它摧毁了妇女的 剥夺了她们的性交能力，破坏了她们的亲密关系。我们 一个研究小组发现，患有EDS的女性（N=1171）抱怨外阴疼痛症状， 外阴痛的患病率为51%，是美国人口的8%的六倍。EDS影响估计 1/5，000，男女比例约为9：1。百分之九十的EDS患者 患有使人衰弱的慢性疼痛，近40%的人因疼痛缓解不足而休残疾或病假。EDS 影响结缔组织，导致日常正常活动中经常出现奇怪和使人衰弱的损伤 生活;例如，刷头发时肩膀脱臼，下楼梯时扭伤脚踝， 或髋关节脱位超过60%的EDS患者使用阿片类药物来减轻痛苦。那里 缺乏关于EDS疼痛的研究，没有关于女性外阴痛的研究， EDS.本研究的目的是描述EDS疼痛和外阴痛的特征，并确定疼痛表型。 我们将在一个横断面方便抽样在线调查中检查全身疼痛和外阴疼痛 通过外阴痛或EDS Facebook支持小组的链接访问。我们将招募825名女性样本 (275在无外阴痛的EDS组中，有外阴痛的EDS组中有275例，有外阴痛的EDS组中有275例 组）。将使用PAINReportIt®（计算机化麦吉尔疼痛问卷（MPQ））测量疼痛。 疼痛报告它专门测量疼痛感觉维度的4个领域（位置，强度，质量， 模式）。EDS和/或外阴痛女性外阴疼痛的特征将允许识别 广泛和外阴疼痛表型和共病的条件模式。结果将允许针对 制定治疗方法，以减轻患有EDS和外阴痛的妇女的痛苦。

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.