Females with hypermobile Ehlers–Danlos syndrome self-report more sexual problems than chronic pain controls without hypermobility, males, or patients with hypermobile spectrum disorders
Background Hypermobile Ehlers–Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSDs) are heritable connective tissue disorders characterized by widespread fragile soft connective tissue affecting the skin, ligaments, joints, vasculature, and internal organs. Although hEDS and HSD are autosomal-dominant conditions and would be expected to display a 1:1 sex ratio, studies report higher prevalence in women. Objectives The purpose of this exploratory study was to determine whether self-reported sexual problems differed between females and males diagnosed with hEDS or HSD compared with controls with chronic pain but no hypermobility. Methods In this exploratory retrospective study, we examined 1,407 patients diagnosed with hEDS or HSD according to the 2017 diagnostic criteria for eight indicators of sexual problems based on a validated screening tool. Results Patients in each diagnosis primarily self-reported as White, non-Hispanic females (90%). Of the 1,407 patients who attended the EDS Clinic, 976 (69%) were diagnosed with HSD, 240 (17%) with hEDS, and 191 (14%) were chronic pain controls with neither diagnosis. For HSD, 937 (96%) were females vs. 39 (4%) males (24:1 females to males), while for hEDS, 210 (88%) were females vs. 30 (13%) males (7:1 females to males), and controls were 165 (86%) females vs. 26 (14%) males (6:1 females to males). Females with hEDS reported significantly higher rates of sexual issues than chronic pain controls, including sexual problems (69%, p = 0.018), problems with sexual interest (41%, p = 0.023), sexual pain (45%, p = 0.006), and orgasm difficulty (34%, p = 0.022) compared with males with hEDS or males or females with HSD. In contrast, males diagnosed with hEDS did not report any sexual problems over controls, and males and females diagnosed with HSD reported only one issue—more problems with sexual interest—compared with controls (females p = 0.019, males p = 0.018). However, the small number of males in this study limits conclusions that can be drawn for them. Conclusions This study is unique because we examine sex differences in sexual problems in patients with hEDS and HSD. Our findings indicate a higher percentage of sexual problems in females with hEDS than chronic pain controls without hypermobility, but this was not observed for females with HSD.
Uncharted Territory: Retrospective Comparison of Care Pathways for Treatment of Female Pelvic Floor Myofascial Pain in a Tertiary Care Center
Purpose: A variety of care pathways are offered to females with chronic pelvic pain (CPP) and pelvic floor myofascial pain (PFMP), which may affect treatment outcomes. This study aims to compare care pathways and describe health care utilization and characteristics of patients with CPP and PFMP referred for physical therapy (PT) at a tertiary care center. Methods: A retrospective cohort analysis was conducted on females with CPP and PFMP referred for PT. Patients received PT, medication management, injection therapy, or a combination of treatments. We collected data on health care utilization, comorbidities of interest, and patient-reported outcome measures (PROMs). Wilcoxon rank-sum tests were used to compare patients with pre- and posttreatment PROM scores. Results: A total of 1172 patients were referred for PT treatment, but 19.5% (n = 229) did not attend any PT sessions, and only 18% (n = 211) of patients attended the recommended number of PT sessions. Comorbid urinary (48.5%, n = 569) and bowel dysfunction (43%, n = 512) were prevalent. Patients consulted with multiple providers. Most patients (57.1%, n = 669) utilized opioid medications. Less than 20% completed both pre-and posttreatment PROMs. Discussion: Care pathways vary widely for the treatment of PFMP. Low adherence to PT and a trend toward greater than 5 subspecialty appointments indicating higher health care utilization reflect the range of inconsistent patient experience likely affecting outcomes. Outcomes of care are uncharted territory. Optimal care pathways for CPP and PFMP need to be established, along with further investigation of PROMs, to determine which treatments result in effective outcomes that matter to patients.
Association of coccygodynia with pelvic floor symptoms in women with pelvic pain
AbstractBackgroundCoccygodynia is a painful condition of the tailbone that occurs more commonly in females. The association of coccyx pain with pelvic floor symptoms and the prevalence of coccyx pain in women with pelvic pain has not previously been reported.ObjectiveTo identify the prevalence of coccygodynia in women with pelvic pain and to describe the association of coccygodynia with pelvic floor examination findings and symptoms.DesignRetrospective cohort analysis.SettingTertiary medical institution.ParticipantsOne hundred twenty‐seven women presenting for outpatient pelvic floor physical therapy treatment who underwent vaginal and rectal pelvic floor examination.Main Outcome MeasuresPrevalence of coccygodynia, pain scores, association of coccygodynia with other comorbidities and diagnoses, and association of coccygodynia with physical examination findings.ResultsSixty‐three (49.6%) of 127 women with pelvic pain presented with coccygodynia and 64 (50.4%) did not. Women with coccygodynia had significantly higher rates of muscle spasm (50.8% vs. 31.2%, p = .025) higher visual analog scale pain scores (median 5 vs. 3, p = .014), higher rates of outlet dysfunction constipation (31.7% vs. 10.0%, p = .032), and higher rates of fibromyalgia (15.9% vs. 3.1%, p = .014). On pelvic examination, women with coccygodynia were significantly more likely to have sacrococcygeal joint hypomobility (65.1% vs. 14.1%, p < .001), coccygeus muscle spasm (77.8% vs. 17.2%, p < .001), anococcygeal ligament pain (63.5% vs. 9.4%, p < .001), external anal sphincter pain/spasm (33.3% vs. 13.1%, p < .001), and impaired pelvic floor muscle coordination (77.8% vs. 57.8%, p = .016).ConclusionsAlmost 50% of women seeking pelvic floor physical therapy for pelvic pain had coexisting coccygodynia. These women had higher pain scores, increased pelvic floor dysfunction, and significantly greater abnormal physical exam findings. This study demonstrates a strong link between coccygodynia, pelvic floor symptoms, and pelvic pain and highlights the importance of screening for and identifying coccyx pain when evaluating women with pelvic pain.