Sexual Health · Sexual Pain
Abstract
People commonly and increasingly rely on the internet to search for health information, including those related to endometriosis-associated dyspareunia. Yet the content of such websites may be of variable accuracy and quality. This review aims to evaluate the quality, readability, and suitability of web-based resources on endometriosis-associated dyspareunia for patients. We searched 3 databases - Google, Bing, and Yahoo - to identify websites related to endometriosis-associated dyspareunia. Two independent reviewers screened the search results against inclusion and exclusion criteria. Another set of two reviewers evaluated the selected websites using validated measurement instruments. Out of 450 websites, 21 met the inclusion criteria and were evaluated. More than half of the websites had information on content updates, reported on authorship, or disclosed sponsorship information. The mean quality and suitability scores were 47.5 (SD = 13.3) and 65.2 (SD = 13.6) respectively, thus suggesting generally adequate quality and suitability levels. However, the mean readability scores exceeded the recommended level for health-related websites. The poor readability of the websites might limit accessibility for a significant proportion of patients with low educational levels. The findings of this review have implications for designing high-quality, readable and up-to-date web interventions for people who rely on web platforms as an alternative or complementary source of health information on dyspareunia.
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Mid-Cycle Pain in Endometriosis: Clinical Correlations and Potential Etiological Factors
Rojas HE et al., 2026 · Journal of women's health (2002)
To characterize differences between individuals with and without mid-cycle pain in a registry cohort with endometriosis. Prospective analysis of data from the Endometriosis Pelvic Pain Interdisciplinary Cohort Data Registry (Clinicaltrials.gov #NCT02911090) at a tertiary referral center in Western Canada. Three hundred forty-five individuals aged 18-49 years who: (1) had at least one episode of menstrual bleeding in the last 3 months, (2) attended a baseline initial visit, and (3) subsequently had surgery with histological confirmation of endometriosis between January 2018 and December 2023. Exclusion criteria included (1) previous hysterectomy; (2) hormonal suppressive therapy use in the last 3 months; and (3) missing data on mid-cycle pain, history of hormonal therapy use, or menstrual cycle regularity. N/A. Mid-cycle pain in the last month versus No mid-cycle pain in the last month. Of the 345 participants, 67% (n = 232) reported mid-cycle pain in the last month. Mid-cycle pain in the last month was significantly associated with higher mean Central Sensitization Inventory score (48 ± 17 versus 36 ± 16, p < 0.001) and more months of prior hormonal suppressive therapy use (58 [14-120] versus 26 [0-109], p = 0.012). Abnormal anatomy at the time of surgery (e.g., endometrioma, ovarian adhesions) was not associated with mid-cycle pain in the last month. In this endometriosis cohort at a tertiary referral center, most participants reported mid-cycle pain in the last month, which was associated with central sensitization but was not clearly related to endometriosis anatomical distortion.
Pelvic Pain · Chronic Pelvic Pain
Endometriosis Pain Index: development of a model to predict poor pain-related quality of life after endometriosis surgery through machine learning analysis of registry data
Tucker DR et al., 2026 · Pain · Free to read
Predictive tools are lacking for pain-related outcomes after endometriosis surgery. The objective of this study was to develop and validate a machine learning-based clinical model to predict poor pain-related quality of life after endometriosis surgery. Registry data from a prospective longitudinal cohort at a tertiary referral center (2013-2020) was used for model development and validation. Participants underwent an index endometriosis surgery, and completed the pain subscale of the Endometriosis Health Profile-30 (EHP-30) at baseline and 1-2-year follow-up. The outcome was poor pain-related quality of life defined as EHP-30 pain subscale above the 75th percentile for North America, at 1 to 2 years postsurgery. Thirty-two preoperative factors were evaluated, with final models retaining the top 10 most important predictors. Elastic net logistic regression, random forest (RF) and multilayer perceptron neural network models were developed. Internal validation was performed using 500 bootstrap samples, and a held-out test cohort. The study included 650 488 in the training cohort and 162 in a held-out test cohort. The RF model exhibited the most consistent discrimination, measured by the area under the receiver operating characteristic curve, between the training cohort (0.768; 95% CI: 0.690-0.837) and test cohort (0.766; 95% CI: 0.676-0.863, Δ = -0.002). The RF model also demonstrated the best integrated calibration index (0.029) and highest net benefit. Final preoperative predictors for the RF model included baseline EHP-30 score, surgery type (conservative fertility-sparing vs hysterectomy), anxiety scores, depression scores, pain catastrophizing scale scores, abdominal wall pain, pelvic floor myalgia, smoking status, back pain, and race/ethnicity. We present the RF model as the Endometriosis Pain Index to aid preoperative counselling for endometriosis surgery.
Pelvic Pain · Chronic Pelvic Pain
Endometriosis, symptoms, and risk for depression and/or anxiety: a population-based retrospective study
Goodwin E et al., 2025 · BMC women's health · Free full text on PubMed Central
Endometriosis is a chronic and inflammatory condition that often presents with chronic pelvic pain, dysmenorrhea, and dyspareunia, thus having important effects on quality of life. There are two proposed hypotheses to describe the known association between endometriosis and depression and anxiety: (1) the disease hypothesis, where the inflammatory nature of endometriosis is driving increased risk for depression and anxiety; and (2) the pain hypothesis, where it is the painful symptoms underlying the increased risk. We aimed to shed further light on these two hypotheses by assessing the risk for depression and/or anxiety in three groups of patients pathologically assessed for endometriosis: symptomatic endometriosis patients (Symp Endo), symptomatic patients with no pathological endometriosis diagnosis (Symp No Endo), and asymptomatic endometriosis patients (Asymp Endo). This study included pathologically-confirmed endometriosis patients identified from the pathology records of Vancouver Coastal Health Authority between 2000 and 2008. These data were linked with population-based administrative health data for follow-up to 2017. Depression and anxiety were identified through diagnostics codes from health services use data and prescriptions for antidepressants. Bivariate analyses were performed to assess differences between groups. Cox proportional hazards models were run to generate hazard ratios for incident depression and/or anxiety between the groups. There were 2729 people in Symp Endo, 585 in Symp No Endo, and 326 in Asymp Endo. Symp No Endo was more likely than Symp Endo to be visiting a physician for pelvic pain and to be taking prescription-level pain medications (p < 0.001). After adjusting for several covariates, Symp No Endo had a significantly higher risk of incident depression and/or anxiety (adjusted HR: 1.23, 95% CI: 1.06-1.41) compared to Symp Endo. There was no statistically significant difference in risk of depression and/or anxiety between Symp Endo and Asymp Endo (adjusted HR: 0.94, 95% CI: 0.76-1.17). These results point toward the pain focused hypotheses as Symp No Endo patients were at higher risk for depression/anxiety than the Symp Endo group. However, the results also suggest the disease hypothesis is at play, because the Symp Endo and Asymp Endo groups were at the same level of risk for depression/anxiety.
Sexual Pain · Dyspareunia
Female Dyspareunia and the Relationship to Neurophysiologic Mechanisms: A Scoping Review
Cook E et al., 2026 · Journal of minimally invasive gynecology
This scoping review aims to evaluate recent studies that examine the relationship between dyspareunia and neurophysiologic factors, and to synthesize their results as it pertains to the development and treatment of introital/vulvar dyspareunia and deep dyspareunia A comprehensive search was conducted in PubMed (NLM), Embase (Elsevier), CINAHL (EBSCOhost), Web of Science (Clarivate), Psycinfo (ProQuest), and Cochrane Library (Wiley) to find peer reviewed studies written in English published in 2000 or later that discussed how neurophysiology is related to dyspareunia. Search terms: dyspareunia; painful intercourse; genito-pelvic pain; penetration disorder; neuropsychology; central nervous system sensitization; neur; central sensitization. A total of 1101 studies were screened and 108 were included in the review. Abstract and full text screening were performed by 4 authors. Articles were also excluded if they did not include an objective diagnostic tool or objective treatment outcome of dyspareunia. We included original peer-reviewed published research in the form of randomized control trials, cohort studies, case control studies, case series of greater than 20 participants, and systematic reviews. Multiple study types were noted: 22 randomized control trials, 9 prospective cohort studies, 3 retrospective cohort studies, 30 case control, 16 case series, 17 cross-sectional, and 11 systematic reviews. Of these articles, 72 focused on introital/superficial dyspareunia, 23 focused on deep dyspareunia, and 13 on both. Data was synthesized in text and table format, separated by type of dyspareunia (introital vs deep) and either etiology/diagnosis or treatment. There are complex neurophysiologic mechanisms that influence both introital and deep dyspareunia, highlighting the roles of peripheral and central sensitization, nerve fiber density, and neuroplasticity in this condition. There are several promising treatments, including TENS, botulinum toxin A, physical therapy, and various multimodal approaches; but further research is needed to establish standardized therapeutic guidelines.
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Sexual Pain · Dyspareunia
Dyspareunia in Their Own Words: A Qualitative Description of Endometriosis-Associated Sexual Pain
Wahl KJ et al., 2021 · Sexual medicine · Free full text on PubMed Central
Dyspareunia has been called the neglected symptom of endometriosis and is underexplored in clinical and research contexts. Understanding the physical experience and patient-important aspects of endometriosis-associated sexual pain can help advance valid measurement of this symptom. The goal of this research was to characterize the physical experience of endometriosis-associated dyspareunia in the words of people affected by this condition. This was a qualitative descriptive study that included participants with current or previous endometriosis-associated dyspareunia recruited from a data registry. Data collection involved semistructured interviews that began with an open-ended question about dyspareunia followed by prompts related to the nature of sexual pain. Interviews transcripts were subjected to qualitative content analysis using a priori (pain site, onset, character, radiation, associations, time course, and exacerbating/relieving factors) and emergent themes. A total of 17 participants completed interviews. Mean participant age was 33.3 years and most were identified as white, college-educated, heterosexual, and partnered. Location, onset, and character were important; interrelated features of endometriosis-associated dyspareunia were: (i) introital pain began with initial penetration and had pulling, burning, and stinging qualities and (ii) pelvic pain was experienced with deep penetration or in certain positions and was described as sharp, stabbing, and cramping. Dyspareunia ranged from mild to severe, had a marked psychosocial impact for some participants, and was managed using a variety of treatments and strategies. The endometriosis-associated dyspareunia experienced by participants was heterogenous in presentation, severity, and impact. Our findings have implications for the development of valid patient-reported outcome measures of this symptom. Wahl KJ, Imtiaz S, Lisonek M, et al. Dyspareunia in Their Own Words: A Qualitative Description of Endometriosis-Associated Sexual Pain. Sex Med 2021;9:100274.
Sexual Pain · Dyspareunia
Acceptability, reliability, and validity of a vaginal insert for the self-assessment of endometriosis-associated deep dyspareunia: a cross-sectional study
MacLeod RGK et al., 2023 · The journal of sexual medicine
Approximately half of people with endometriosis experience deep dyspareunia; however, there is no means of objective self-testing of endometriosis-associated deep dyspareunia. The aim of this study was to assess the acceptability, test-retest reliability, and validity of a vaginal insert for a self-assessment of endometriosis-associated deep dyspareunia. Participants were recruited from a tertiary endometriosis center. Inclusion criteria were: 19 to 49 years of age, self-reported deep dyspareunia of ≥4 of 10, and surgically confirmed endometriosis. Participants completed 2 self-assessments using the vaginal insert to self-assess tenderness at the right and left pelvic floor, bladder, cervix-uterus, and posterior cul-de-sac (vaginal fornix). The participants recorded tenderness at each pelvic site and completed a questionnaire regarding the acceptability of the vaginal insert to assess deep dyspareunia. Test-retest reliability was assessed by correlating the tenderness scores between the 2 assessment dates. Over a 4-week period, the participants also recorded deep dyspareunia severity at each penetrative vaginal sex encounter. Validity was assessed by correlating vaginal insert tenderness to deep dyspareunia severity, and also to tenderness reported on a prior gynecologic pelvic examination. The main outcome measures were the acceptability index score, tenderness (0-10) at each pelvic site, and prospective deep dyspareunia scores (0-10) over 4 weeks. There were 19 participants (mean age 34 ± 7 years) who completed the study. The majority identified as female (94.7%), heterosexual (89.5%), and white (89.5%). The median acceptability index score was 0.72 (interquartile range, 0.66-0.81). For test-retest reliability, the intraclass correlation coefficients were 0.79 (P = .001) for the left pelvic floor, 0.82 (P < .001) for the right pelvic floor, 0.54 (P = .07) for the bladder, 0.89 (P < .001) for the cervix-uterus, and 0.77 (P = .003) for the cul-de-sac. The correlation between the highest self-assessed mean tenderness in each participant and self-reported deep dyspareunia over 4 weeks was r = 0.32, but correlations for each pelvic site varied significantly. Tenderness at each site on prior gynecologist pelvic exam was associated with higher self-assessed mean tenderness with the vaginal insert in each participant (effect sizes = 0.42-0.88). The vaginal insert is acceptable and reliable for the objective self-assessment of endometriosis-associated deep dyspareunia, with initial evidence of validity. A strength was the inclusion of participants who were avoiding sexual activity and a limitation was the small sample size. Future studies with larger sample sizes are required to further establish the validity of the vaginal insert for the self-assessment of endometriosis-associated deep dyspareunia.
Sexual Pain · Dyspareunia
Deep Dyspareunia and Sexual Quality of Life in Women With Endometriosis
Shum LK et al., 2018 · Sexual medicine · Free full text on PubMed Central
Deep dyspareunia occurs in half of women with endometriosis, a condition present in 10% of reproductive-age women and associated with negative effects on sexual quality of life (SQoL). However, women with endometriosis can have other clinical factors (eg, superficial dyspareunia, other pelvic pains, and psychological or pain conditions) possibly affecting SQoL. To determine whether deep dyspareunia is associated with SQoL in women with endometriosis, independent of potential confounders. This study involved a prospective patient registry of women at a tertiary-level referral center for endometriosis and pelvic pain. Inclusion criteria were (i) referrals to the center recruited into the registry from January 2014 through December 2016 and (ii) subsequent surgery at the center with histologic confirmation of endometriosis. Exclusion criteria included menopausal status, age at least 50 years, never sexually active, or did not answer dyspareunia or SQoL questions. Bi-variable tests and multiple linear regression analysis were performed. SQoL measured by the 5-item sexual intercourse subscale of the Endometriosis Health Profile-30 (EHP-30) modular questionnaire (0-100%, with higher scores indicating worse SQoL). Consent rate for the prospective registry was 87%; 277 women met the study criteria (mean age = 34.2 ± 7.1 years). Most women had stage I to II endometriosis at time of surgery (64%), with the remaining having stage III to IV endometriosis. Through regression analysis, worse SQoL (higher EHP-30 sexual intercourse subscale score) was independently associated with: more severe deep dyspareunia (P < .0001), more severe superficial dyspareunia (P < .0001), increased depression (P < .001), higher pain catastrophizing (P = .04), bladder pain syndrome (P = .02), heterosexual orientation (P < .001), and new referral status (P = .02). In women with endometriosis at a tertiary referral center, more severe deep dyspareunia was associated with worse SQoL, independent of superficial dyspareunia, psychological comorbidities, and other potential confounders. Shum LK, Bedaiwy MA, Allaire C, et al. Deep Dyspareunia and Sexual Quality of Life in Women With Endometriosis. Sex Med 2018;6:224-233.
Sexual Pain · Dyspareunia
Deep Dyspareunia in Endometriosis: Role of the Bladder and Pelvic Floor
Orr NL et al., 2018 · The journal of sexual medicine
The etiology of endometriosis-associated deep dyspareunia may include direct endometriosis-specific factors (eg, stage or invasiveness of disease) and/or indirect contributors such as bladder/pelvic floor dysfunction (eg, related to myofascial mechanisms or nervous system sensitization). This study aimed to determine whether bladder/pelvic floor tenderness and painful bladder syndrome were associated with severity of deep dyspareunia in women with endometriosis, regardless of Stage (I/II vs III/IV) or other endometriosis-specific factors. Observational study from a prospective patient registry (January 2014 to December 2016) at a tertiary centre for endometriosis. Included were women aged 18 to 49 years who had surgical removal and histopathologic confirmation of endometriosis at the centre. Cases with Stage I/II vs Stage III/IV endometriosis were analyzed separately. Bivariate associations with the primary outcome (severity of deep dyspareunia) were tested for bladder/pelvic floor tenderness, painful bladder syndrome, as well as endometriosis-specific factors identified at the time of laparoscopic surgery (eg, deep infiltrating endometriosis) and demographic factors (eg, age). Multivariable ordinal logistic regression was carried out to adjust for factors associated with the primary outcome. Primary outcome was severity of deep dyspareunia on an 11-point numeric rating scale, categorized as none/mild (0-3), moderate (4-6), and severe (7-10), from a preoperative self-reported questionnaire. Overall, 411 women had surgically confirmed endometriosis: 263 had Stage I/II and 148 had Stage III/IV endometriosis. Among women with Stage I/II endometriosis, severity of deep dyspareunia was associated with both bladder/pelvic floor tenderness and painful bladder syndrome (AOR = 1.94, 95% CI: 1.11-3.38, P = .019 and AOR = 1.99, 95% CI: 1.15-3.44, P = .013, respectively), independent of endometriosis-specific factors or other factors associated with deep dyspareunia severity. Similar associations were found in women with Stage III/IV endometriosis (bladder/pelvic floor tenderness AOR =2.51, 95% CI: 1.25-5.02, P = .01, painful bladder syndrome: AOR = 1.90, 95% CI: 1.01-3.57, P = .048). Myofascial or nervous system mechanisms may be important for deep dyspareunia in women with endometriosis, even in those with moderate-to-severe disease (Stage III/IV). Strengths include the prospective registry, and histological confirmation of endometriosis and staging by experienced endometriosis surgeons. Limitations include assessment of only one pelvic floor muscle (levator ani). In women with Stage I/II or Stage III/IV endometriosis, severity of deep dyspareunia was strongly associated with bladder/pelvic floor tenderness and painful bladder syndrome, independent of endometriosis-specific factors, which suggests the role of myofascial or sensitization pain mechanisms in some women with deep dyspareunia. Orr NL, Noga H, Williams C, et al. Deep Dyspareunia in Endometriosis: Role of the Bladder and Pelvic Floor. J Sex Med 2018;15:1158-1166.
Sexual Health › Sexual Pain › Dyspareunia · General Gynecology › Pelvic Pain › Chronic Pelvic Pain · Research Methods › Evidence Synthesis › Systematic Reviews
Abdul-Fatawu Abdulai, A Fuchsia Howard, Gurkiran Parmar, Abdul Aziz Abdul-Ghafoor, Michelle Lisonek
A Abdulai, G Parmar, A Abdul-Ghafoor, M Lisonek
PMID 38308637 38308637 DOI 10.1177/14604582241231151 10.1177/14604582241231151 Abdulai et al. 2024, Abdulai 2024