Executive Summary of the Vulvodynia Therapeutic Research Summit

Experiences of Care and Gaslighting in Patients With Vulvovaginal Disorders

Moss CF et al., 2025 · JAMA Netw Open · Free full text on PubMed Central

Medical gaslighting, in which a patient's concerns are dismissed without proper evaluation, has been described anecdotally in vulvovaginal patient care, but has not been quantified. To use a patient-centered instrument to measure adverse experiences in vulvovaginal care. DESIGN, SETTING, Common themes from National Vulvodynia Association patient testimonials were used to design a mixed-methods measure of patient experience that included both quantitative and qualitative questions. An instrument was created and submitted to officers from the National Vulvodynia Association and Tight-Lipped, another patient advocacy organization, for feedback. The measure was then completed by patients before their first appointment at a vulvovaginal disorder referral clinic from August 2023 to February 2024. Exposure: Participation in the survey. Main Outcomes and Measures: The primary outcome was the incidence of reported clinician behavior and consequent distress as reported on the survey instrument. Quantitative data were analyzed using simple descriptive statistics (mean [SD], median [IQR], and percentage). Narrative responses provided by patients were analyzed using the clinical-qualitative method for content analysis. A total of 520 patients completed surveys; 5 were eliminated because the patient was younger than 18 years, 6 were eliminated for duplication, 6 were eliminated because they had no past clinician, and 56 were eliminated for completely blank responses. Thus, surveys of 447 patients (mean [SD] age, 41.7 [15.2] years) were analyzed (86% response rate). Patients had a mean (SD) of 5.50 (4.53) past clinicians. Patients reported that a mean (SD) of 43.5% (33.9%) of past practitioners were supportive, 26.6% (31.7%) were belittling, and 20.5% (30.9%) did not believe the patient. In total, 186 patients (41.6%) were told they just needed to relax more, 92 (20.6%) were recommended to drink alcohol, 236 (52.8%) considered ceasing care because their concerns were not addressed, 92 (20.6%) were referred to psychiatry without medical treatment, 72 (16.8%) felt unsafe during a medical encounter, and 176 (39.4%) said they were made to feel crazy, the most distressing surveyed behavior (rated at a mean [SD] of 7.39 [3.06] of 10 on a numerical rating scale of distress). A total of 1150 quotations were analyzed qualitatively; common themes included lack of clinician knowledge (247 quotations) and dismissive behaviors (211 quotations). Conclusions and Relevance: In this cross-sectional study, a patient-centered measure of adverse experiences in vulvovaginal care was developed. Participants reported common past experiences with gaslighting and substantial distress; they frequently considered ceasing care. There is an urgent need for education supporting a biopsychosocial, trauma-informed approach to vulvovaginal pain and continued development of validated instruments to quantify patient experiences.

Negative Sliding Sign during Dynamic Ultrasonography Predicts Low Endometriosis Fertility Index at Laparoscopy

Alfaraj S et al., 2021 · Journal of minimally invasive gynecology

Endometriosis fertility index (EFI) is a robust tool to predict the pregnancy rate in patients with endometriosis who are attempting non-in vitro fertilization conception. However, EFI calculation requires laparoscopy. Newly established imaging techniques such as sliding sign, which is used to diagnose pouch of Douglas obliteration, could provide a promising alternative. The objective of this study was to investigate the practicality of using ultrasound data to predict a low EFI (score ≤6). Observational study from a prospective registry (Endometriosis Pelvic Pain Interdisciplinary Cohort, clinicaltrials.gov #NCT02911090). Analyzed data were captured from December 2013 to June 2017. Tertiary referral center at British Columbia Women's Hospital. We analyzed data for 2583 participants from the Endometriosis Pelvic Pain Interdisciplinary Cohort. In this cross-sectional study, we included 86 women aged <40 years. Dynamic ultrasonography for the sliding sign testing and EFI calculation during laparoscopic surgery. Logistic regression was used to obtain receiver operating characteristic area under the curve (AUC) for the prediction models. Significance was p <.05. Patients with a negative sliding sign were older and had severe endometriosis and longer duration of infertility. Patients with a negative sliding sign had significantly lower total EFI scores and lower surgical factors scores than patients with a positive sliding sign. Logistic regression showed that a negative sliding sign and EFI historic factors score can predict an EFI score ≤6 (sensitivity = 87.9%, specificity = 81.1%, AUC = 0.93 [95% confidence interval, 0.88-0.98]). Adding the diagnosis of endometrioma to the previous prediction model resulted in AUC = 0.95 (95% confidence interval, 0.90-0.995), sensitivity = 84.8%, and specificity = 92.5%. The sliding sign could be a potential alternative to the EFI surgical factors, and it could be used in combination with EFI historic factors and the diagnosis of endometrioma to predict an EFI score ≤6 for patients who are not scheduled for immediate surgery.

A randomized double-blind placebo-controlled trial of autologous platelet-rich plasma intradermal injections for the treatment of vulvar lichen sclerosus

Goldstein AT et al., 2019 · Journal of the American Academy of Dermatology

Vulvodynia: A disease commonly hidden in plain sight

Vieira-Baptista P et al., 2018 · Case Reports in Women's Health · Free full text on PubMed Central

•Vulvodynia affects at least 6% of women, and can be found at any age and in all ethnic groups.•The diagnosis is one of exclusion but is very often missed.•Women with vulvodynia are frequently misdiagnosed as having vaginismus.•Failure to make the diagnosis often leads to irrelevant or deleterious examinations and treatments.

Impact of a multidisciplinary vulvodynia program on sexual functioning and dyspareunia

Brotto LA et al., 2015 · The journal of sexual medicine

For many years, multidisciplinary approaches, which integrate psychological, physical, and medical treatments, have been shown to be effective for the treatment of chronic pain. To date, there has been anecdotal support, but little empirical data, to justify the application of this multidisciplinary approach toward the treatment of chronic sexual pain secondary to provoked vestibulodynia (PVD). This study aimed to evaluate a 10-week hospital-based treatment (multidisciplinary vulvodynia program [MVP]) integrating psychological skills training, pelvic floor physiotherapy, and medical management on the primary outcomes of dyspareunia and sexual functioning, including distress. A total of 132 women with a diagnosis of PVD provided baseline data and agreed to participate in the MVP. Of this group, n = 116 (mean age 28.4 years, standard deviation 7.1) provided complete data at the post-MVP assessment, and 84 women had complete data through to the 3- to 4-month follow-up period. There were high levels of avoidance of intimacy (38.1%) and activities that elicited sexual arousal (40.7%), with many women (50.4%) choosing to focus on their partner's sexual arousal and satisfaction at baseline. With treatment, over half the sample (53.8%) reported significant improvements in dyspareunia. Following the MVP, there were strong significant effects for the reduction in dyspareunia (P = 0.001) and sex-related distress (P < 0.001), and improvements in sexual arousal (P < 0.001) and overall sexual functioning (P = 0.001). More modest but still statistically significant were improvements in sexual desire, lubrication, orgasmic function, and sexual satisfaction. All improvements were retained at 2- to 3-month follow-up. This study provides strong support for the efficacy of a multidisciplinary approach (psychological, pelvic floor physiotherapy, and medical management) for improving dyspareunia and all domains of sexual functioning among women with PVD. The study also highlights the benefits of incorporating sexual health education into general pain management strategies for this population.

Systematic Review of Treatment Outcome Measures for Vulvodynia

Sadownik LA et al., 2018 · Journal of lower genital tract disease

To systematically evaluate the literature regarding vulvodynia treatment outcome measures. A systematic literature search on OVID, PubMed, and PsycINFO databases was conducted from inception until May 2016. Studies were included/excluded based on prespecified criteria. Reported outcome measures were organized into 6 core outcome domains recommended by the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (IMMPACT): pain; physical functioning, emotional functioning, participant ratings of global improvement and satisfaction with treatment, symptoms and adverse events, and participant disposition. Of the 206 articles identified for full-text screening, 33 met our criteria. One study adhered to all IMMPACT recommendations. The number of outcomes measured per study ranged from 1 to greater than 20. Patient-reported pain outcomes were found in the majority (27/33; 82%) of studies. Pain severity with intercourse was reported by 24 (73%) of 33 studies-9 different scales were used to measure this outcome. Clinician-reported outcomes were present in 14 (42%) of 33 studies. Methods of measuring vestibular sensitivity by "cotton swab" test were different in 8 of 10 studies. Other domains reported included; physical function (8/33 studies; 24%), sexual function (23/33 studies; 70%), and emotional function (13/33 studies; 39%). Symptoms and adverse events were reported by 15 (45%) of 33 studies. One study formally reported participant disposition using all the information recommended by CONSORT. Comparison of clinical trial results in vulvodynia is not possible because of a lack of standard treatment outcome measures. Vulvodynia researchers should apply the IMMPACT criteria to guide the development of a minimum core set of standard outcome measures that measure holistic health.

Provoked Vestibulodynia in Women with Pelvic Pain

Bao C et al., 2019 · Sexual medicine · Free full text on PubMed Central

Pelvic pain and vulvar pain are common conditions in women. In this study, we sought to characterize the clinical picture of patients with concurrent pelvic pain and provoked vestibulodynia (PVD). To analyze the association between sexual/clinical characteristics and a diagnosis of PVD among women with pelvic pain. Cross-sectional analysis of a prospective registry at a tertiary referral center for pelvic pain and endometriosis, involving consecutive non-menopausal sexually active patients 18-49 years-old seen by a single gynecologist from January 2016-December 2017. The sample was divided into 2 groups: pelvic pain with PVD; and pelvic pain alone (without PVD). Superficial dyspareunia and deep dyspareunia on a 11-point numeric rating scale, and the sexual quality-of-life subscale of the Endometriosis Health Profile-30 (0-100%). There were 129 patients that met study criteria: one third with pelvic pain and PVD (n = 42) and two-thirds with pelvic pain alone (without PVD) (n = 87). Women with pelvic pain and PVD had significantly more severe superficial dyspareunia ≥7/10 (OR = 12.00 (4.48-32.16), P < .001), more severe deep dyspareunia ≥7/10 (OR = 4.08 (1.83-9.10), P = .001), and poorer sexual quality of life (Endometriosis Health Profile-30 ≥50%) (OR = 4.39 (1.67-11.57), P = .002), compared with the group with pelvic pain alone. Women with pelvic pain and PVD also had more anxiety, depression, and catastrophizing, more frequent tenderness of the bladder and pelvic floor, and more common diagnosis of painful bladder syndrome. On the other hand, there were no significant differences between the 2 groups in terms of dysmenorrhea, chronic pelvic pain, abdominal wall allodynia, positive Carnett test for abdominal wall pain, functional quality of life, endometriosis, and irritable bowel syndrome. In the pelvic pain population, PVD may be associated with more negative impact on dyspareunia, sexual quality of life, and bladder/pelvic floor function, but it may not significantly impact abdominopelvic pain or day-to-day function in general. Bao C, Noga H, Allaire C, et al. Provoked Vestibulodynia in Women with Pelvic Pain. Sex Med 2019;7:227-234.

Photobiomodulation for hormone therapy-induced sexual dysfunction in women with breast cancer: a prospective quasi-experimental clinical study with a parallel observational group

Vieira LR et al., 2026 · Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

Breast cancer survivors undergoing hormone therapy frequently experience vaginal pain and sexual dysfunction, which negatively affect quality of life. These symptoms are often undertreated, and new therapeutic approaches are needed. To evaluate the effects of photobiomodulation (PBM) on vaginal pain, sexual function, safety, and tolerability in women with breast cancer undergoing hormone therapy. A prospective, quasi-experimental clinical study was conducted with 24 women presenting hormone therapy-induced sexual dysfunction, who underwent four weekly intra- and extra-cavitary PBM sessions (blue LED-440 nm, 8 min; red LED-660 nm, 20 min). Eight eligible participants who declined the intervention due to embarrassment were followed as an untreated observational group. Assessments were performed before and after the intervention using the Female Sexual Quotient Questionnaire (QS-F) and the Visual Analog Scale (VAS) for vaginal pain. At baseline, 82.6% of participants reported maximum vaginal pain (VAS = 10), and 78.2% presented absent or severely impaired sexual function. After four PBM sessions, 79.1% of the women reported complete absence of pain, with mean VAS scores decreasing from 9.46 ± 0.98 to 1.04 ± 2.17 (p < 0.0001). Sexual function also improved significantly, with mean QS-F scores increasing from 23.25 ± 23.47 to 87.21 ± 17.93 (p < 0.0001), and 95.8% of participants reporting good to excellent sexual function after treatment. The intervention was well tolerated, with no adverse events reported. The observational group showed no changes in the evaluated outcomes. PBM proved to be safe, well tolerated, and clinically effective in reducing vaginal pain and improving sexual function in women with breast cancer undergoing hormone therapy, representing a promising therapeutic alternative.