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

女性外阴痛和埃勒斯-当洛斯综合征 (EDS) 疼痛的特征

• 批准号: 10613489
• 负责人: Jennifer Glayzer
• 金额: $ 3.45万
• 依托单位: UNIVERSITY OF ILLINOIS AT CHICAGO
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-05-16 至 2023-12-15
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10613489
• 关键词: Activities of Daily Living; Acute; Address; Affect; Age; American; Ankle; Body mass index; Characteristics; Chronic; Classification; Coitus; Connective Tissue; Connective Tissue Diseases; Dimensions; Disease; Dyspareunia; Ehlers-Danlos Syndrome; Etiology; Facebook; Female; Female genitalia; Fibromyalgia; Genetic; Hair; Hip Dislocation; Individual; Injury; Irritable Bowel Syndrome; Joints; Knowledge; Learning; Lesion; Life; Link; Literature; Location; McGill Pain Scale; Measures; Menopause; Methods; Migraine; Modeling; Neuropathy; Nociception; Pain; Patients; Pattern; Pelvic Examination; Peripheral Nervous System; Phenotype; Population; Prevalence; Questionnaires; Reporting; Research; Sample Size; Sampling; Sensory; Shoulder Dislocation; Sick Leave; Sprain; Support Groups; Surveys; Symptoms; Syndrome; Techniques; Temporomandibular Joint Dysfunction Syndrome; Vacuum; Vagina; Variant; Vulvodynia; Walking; Woman; chronic pain; comorbidity; computerized; disability leave; effective therapy; experience; flexibility; innovation; male; mast cell; opioid use; pain relief; painful neuropathy; personalized health care; personalized medicine; recruit; targeted treatment; treatment strategy; vulvar pain

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.

项目摘要/摘要 Ehlers-Danlos综合征（EDS）的妇女（一种遗传结缔组织障碍）患有惊人的77％ 全球性交发生率（性交期间的阴道疼痛）为20％。外阴痛（慢性 外阴疼痛）是伴气疾病的原因之一。外阴痛没有已知的病因。它使妇女丧生 活着，抢劫他们有性交往和着色者的能力。我们的 研究小组发现，EDS的女性（n = 1171）抱怨外阴痛症状，可能已经结束 外阴痛的患病率是51％的六倍，而美国人口为8％。 EDS影响估计的 女性与男性比率约为9：1的5,000名中有1个。 EDS患者中有90％ 使慢性疼痛使人虚弱，由于疼痛缓解不足，近40％的疼痛因残疾或病假。 eds 影响结缔组织，导致经常因每天正常活动而导致造成奇怪的伤害 活的;例如，从梳理头发，从楼下行走的脚踝旋转的肩膀脱位， 或吸尘时髋关节脱位。超过60％的ED患者使用阿片类药物缓解痛苦。那里 是表征EDS疼痛的研究很少，没有研究表征的研究表征 eds。我们研究的目的是表征EDS疼痛和外阴痛，并确定疼痛表型。 我们将在横截面便利样本在线调查中检查一般的疼痛和外阴疼痛 通过Vulvodynia或EDS Facebook支持组中的链接访问。我们将招募825名女性样本 （在没有外阴痛的EDS组中，有275个，有275个eds组为外阴差，在外阴痛中为275 团体）。疼痛将使用PainrePortit®计算机化的McGill疼痛问卷（MPQ）测量。 PainReportit专门测量疼痛感官维度的4个域（位置，强度，质量， 和模式）。 EDS和/或外阴痛的女性外阴疼痛的表征将允许识别 广义和外阴疼痛表型以及合并状况模式的模式。结果将允许有针对性 要开发的治疗方法，以减轻EDS和外阴痛的妇女的苦难。

项目成果

Protocol for double-blind RCT of acupuncture for vulvodynia.

• DOI: 10.1016/j.conctc.2022.101029
• 发表时间: 2022-12
• 期刊: Contemporary clinical trials communications
• 影响因子: 1.5

High rate of dyspareunia and probable vulvodynia in Ehlers-Danlos syndromes and hypermobility spectrum disorders: An online survey.

• DOI: 10.1002/ajmg.c.31939
• 发表时间: 2021-12
• 期刊: American journal of medical genetics. Part C, Seminars in medical genetics
• 作者: Glayzer JE;McFarlin BL;Castori M;Suarez ML;Meinel MC;Kobak WH;Steffen AD;Schlaeger JM
• 通讯作者: Schlaeger JM

Evaluation and Treatment of Vulvodynia: State of the Science (2022-03-JMWH).

外阴痛的评估和治疗：科学现状 (2022-03-JMWH)。

• DOI: 10.1111/jmwh.13468
• 发表时间: 2023
• 期刊: Journal of midwifery & women's health

Women's Experience of Living with Vulvodynia Pain: Why They Participated in a Randomized Controlled Trial of Acupuncture.

女性外阴痛的经历：为什么她们参加随机对照针灸试验。

• DOI: 10.1089/jicm.2022.0647
• 发表时间: 2023
• 期刊: Journal of integrative and complementary medicine
• 作者: Desloge,AllissaA;Patil,CrystalL;Glayzer,JenniferE;Suarez,MarieL;Kobak,WilliamH;Meinel,Monya;Steffen,AlanaD;Burke,LarisaA;Yao,Yingwei;Takayama,Miho;Yajima,Hiroyoshi;Kaptchuk,TedJ;Takakura,Nobuari;Foster,DavidC;Wilkie,D
• 通讯作者: Wilkie,D