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.

项目总结/文摘

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