BACKGROUND: Ehlers-Danlos syndromes (EDS) are a group of connective tissue disorders caused by fragile lax collagen. Current EDS research lacks racial and ethnic diversity. The lack of diversity may be associated with the complexities of conducting a large international study on an underdiagnosed condition and a lack of EDS health care providers who diagnose and conduct research outside of the United States and Europe. Social media may be the key to recruiting a large diverse EDS sample. However, studies that have used social media to recruit have not been able to recruit diverse samples.
OBJECTIVE: This study aims to discuss challenges, strategies, outcomes, and lessons learned from using social media to recruit a large sample of females with EDS.
METHODS: Recruitment on social media for a cross-sectional survey examining dyspareunia (painful sexual intercourse) in females was examined. Inclusion criteria were (1) older than 18 years of age, (2) assigned female at birth, and (3) diagnosed with EDS. Recruitment took place on Facebook and Twitter (now X), from June 1 to June 25, 2019.
RESULTS: A total of 1178 females with EDS were recruited from Facebook (n=1174) and X (n=4). On Facebook, participants were recruited via support groups. A total of 166 EDS support groups were identified, 104 permitted the principal investigator to join, 90 approved posting, and the survey was posted in 54 groups. Among them, 30 of the support groups posted in were globally focused and not tied to any specific country or region, 21 were for people in the United States, and 3 were for people outside of the United States. Recruitment materials were posted on X with the hashtag #EDS. A total of 1599 people accessed the survey and 1178 people were eligible and consented. The average age of participants was 38.6 (SD 11.7) years. Participants were predominantly White (n=1063, 93%) and non-Hispanic (n=1046, 92%). Participants were recruited from 29 countries, with 900 (79%) from the United States and 124 (11%) from Great Britain.
CONCLUSIONS: Our recruitment method was successful at recruiting a large sample. The sample was predominantly White and from North America and Europe. More research needs to be conducted on how to recruit a diverse sample. Areas to investigate may include connecting with more support groups from outside the United States and Europe, researching which platforms are popular in different countries, and translating study materials into different languages. A larger obstacle to recruiting diverse samples may be the lack of health care providers that diagnose EDS outside the United States and Europe, making the pool of potential participants small. There needs to be more health care providers that diagnose and treat EDS in countries that are predominantly made up of people of color as well as research that specifically focuses on these populations.
UNASSIGNED: RR1-10.2196/53646.

Given the limitations of medical treatment for endometriosis, self-management is a critical component of symptom management, and providing patients with information and education is a necessary complement to medical interventions. Though 50 to 70% of people with endometriosis experience dyspareunia (painful sex), there is limited knowledge of self-management specific to painful sex. A comprehensive understanding of the self-management strategies used is foundational to developing supportive care interventions that help ease pain and related psychosocial sequelae. The objective was to describe people\'s experiences of navigating endometriosis-associated painful sex and developing self-management strategies. We analyzed interview data from 20 women using constant comparative and thematic analysis techniques, guided by qualitative interpretive description methodology. Participants (age range 18-44 years) all identified as women and were predominately Caucasian (90%) and heterosexual (80%). Throughout their lives, the women appeared to gradually develop self-management strategies while navigating painful sexual experiences. This complex journey encompassed four phases: 1) viewing painful sex as normal, 2) experiencing evolving thoughts and emotions, 3) coming to understand painful sex and seeking help, and 4) learning strategies to navigate painful sex, these include preparing mentally and physically for sex and communicating with intimate partner(s). Women in this study developed self-management strategies over time through engagement with others who understood their challenges. Future research is warranted regarding initiatives to counter the normalization of painful sex, develop and disseminate patient-facing information, provide education specific to dyspareunia, improve access to multidisciplinary care, facilitate social connections and support, and enhance communication with intimate partners. PERSPECTIVE: In this paper, we report on the experiences of women with endometriosis-associated painful sex and their self-management strategies. Clinicians may be interested in a qualitative exploration of endometriosis-associated painful sex as they seek to further understand their patient\'s experiences and what strategies can be implemented to alleviate dyspareunia. DATA AVAILABILITY: The data sets generated during and/or analyzed during the current study are not publicly available as participants did not consent to making their data publicly available but are available from the corresponding author on reasonable request.

There is low social awareness of vaginismus despite it being a relatively common female sexual dysfunction that makes vaginal penetration painful, difficult, and/or impossible. While existing literature on vaginismus has had a clinical focus on the affected genitalia, there is a lack of research on women\'s help-seeking experiences of vaginismus from their perspective.
This integrative review\'s objective was to explore: women\'s help-seeking experiences of vaginismus, and how such help-seeking experiences impact their sense of self.
Cooper\'s five-step integrative review approach was followed to develop a research question, a search strategy, selection criteria, and data evaluation, analysis, and presentation.
A systematic search of the literature was completed in the following seven databases in January 2023: PsycINFO, ProQuest Central, PubMed, Scopus, CINAHL, Cochrane, and Embase. Out of the 373 articles found through database searches and additional citation searching, 22 studies were included in this review for meeting the eligibility criteria of having an empirical design, being written in English, and examining women\'s help-seeking experiences for vaginismus and its impact on their sense of self.
Thematic analysis was used to summarize the findings from the included studies which were informed by 1671 participants. Help-Seeking Process, Medical Management, Help-Seeking and Sense of Self, and Holistic Care Recommendations from the Findings emerged as four major themes with corresponding subthemes.
This review indicates that women continue to face difficulties in seeking and receiving help for vaginismus even through the healthcare system. However, the studies did not explicitly discuss how women\'s help-seeking for vaginismus impacted their sense of self. This highlights an epistemological gap on how women\'s help-seeking for their vaginismus impacts their sense of self, which can affect their treatment responses. Recommendations are provided for future healthcare and research to improve health outcomes for women with vaginismus.

BACKGROUND: Endometriosis is a complex chronic disease characterized by pain, including painful sex, that can contribute to considerable sexual function, self-esteem, and relationship challenges. Digital storytelling is an arts-based, participatory methodology wherein individuals create and share their illness experiences in detailing their lived experiences.
OBJECTIVE: The study objective was to pilot-test a web-based digital storytelling workshop focused on endometriosis to understand storytellers\' experiences of workshop participation. We assessed the feasibility of story cocreation and sharing, including the emotional impact of workshop participation, the acceptability of the workshop for the subject matter, and the storytellers\' willingness to share their stories with broader audiences as a method for knowledge translation.
METHODS: This study used a community-based participatory methodology supplemented with patient-oriented research and integrated knowledge translation. Study participants, referred to as storytellers, cocreated 3- to 5-minute individual digital stories about their lived experiences of endometriosis during a web-based workshop (comprising five 2-hour sessions over 6 weeks) facilitated by The Center for Digital Storytelling. Data were collected through participant observations at the workshop, storyteller weekly reflective journals, and an end-of-workshop focus group interview with storytellers. These data were analyzed using a qualitative interpretive description approach.
RESULTS: A total of 5 women and 1 nonbinary storyteller aged 19 to 39 years who had experienced endometriosis for 4 to 22 years participated in the study. We characterized storytelling workshop participation and the acceptability of story cocreation by describing participants\' experiences of opportunity, commitment, and connection; complex emotions that were healing; and a desire to share. Feasibility was demonstrated through 100% engagement in the workshops. All 6 storytellers reported feeling empowered by publicly sharing their cocreated digital stories through social media and the Sex, Pain & Endometriosis website.
CONCLUSIONS: Despite the complexities of the story-building process, the workshop and the cocreation and sharing of digital stories were feasible. The storytellers found that this process allowed for emotional healing and personal empowerment by offering a unique way to talk about painful sex, which also facilitated a connection among those in the workshop. The use of digital storytelling as a knowledge translation tool shows promise, and this approach also has potential as a therapeutic intervention.

BACKGROUND: While the situation of married adolescent girls in Tanzania is increasingly documented, empirical evidence concerning the ways in which child marriage impacts girls\' and young women\'s sexual lives is limited. Specifically, little is known about lived experiences on sexual violence among married adolescent girls in Tanzania.
METHODS: This article reports on a qualitative study using a phenomenological approach to describe married girls\' experiences of sexual violence in the Shinyanga Region, an area with the highest prevalence (59%) of child marriage in Tanzania. Data were collected from 20 married girls aged 12-17 years.
RESULTS: The study identified four analytical themes regarding the experience of sexual violence, namely: forced sex; rape; struggling against unpleasant and painful sex; and inculcation of the culture of tolerance of sexual violence.
CONCLUSIONS: The study highlights the voices of married adolescents on an important but a neglected topic of relevance to Tanzania\'s public health. Findings from this study suggest that married adolescent girls suffer sexual coercion in silence. Child marriage is a major public health problem in sub-Saharan Africa in general and in Tanzania in particular. However, there is limited research on the ways in which it impacts sexual lives of married adolescent girls. In response to the inadequacy of information, married adolescent girls in Shinyanga Region of Tanzania were requested to voice out their experiences of sexual violence. Three themes were identified from the responses, namely: forced sex; rape, struggling against unpleasant and painful sex; and the inculcation of the culture of tolerance of sexual violence. In conclusion, this study has echoed voices of married adolescent girls on the sexual troubles they experience. Their main concern is that they suffer sexual coercion in silence, which increases their risk of acquiring sexually transmitted infections and/or unwanted pregnancies. Recommendations for sexual violence prevention strategies are discussed.

Although much research has examined correlates of pain during sex, far less research has examined why women have sex despite having pain and why they avoid telling their partner.
The purpose of our study was to examine women\'s reports of painful sex, including location of pain, whether they told their partner, factors associated with not disclosing their pain, and their reasons for not disclosing.
We used data from the 2018 National Survey of Sexual Health and Behavior, a probability-based online survey of 2,007 individuals ages 14 to 49 years. We limited our sample to adult women who reported a sexual experience that was painful in the past year (n = 382; 23.2%). The primary outcome in quantitative analyses was whether women told their partner they experienced pain during sex. Associations with social identities and sexual health were explored via logistic regression. Those who did not tell their partner about painful sex were asked why; their accounts were coded and analyzed qualitatively.
Women were asked, \"To what extent was this sexual experience physically painful for you?\" Those who reported any pain were asked, \"Did you tell your partner that you were in pain during sex?\" and, if applicable, \"Why didn\'t you tell your partner that you were in pain during sex?\"
Of those reporting pain during sex, most said it was \"a little painful\" (81.6%) and occurred at the vaginal entrance (31.5%), inside the vagina (34.4%), or at or around the cervix (17.4%). Overall, 51.0% (n = 193/382) told their partner about their pain. Adjusting for age and wantedness, women who reported little or no event-level sexual pleasure had nearly 3-fold greater odds of not telling a partner about painful sex (adjusted odds ratio = 3.24; 95% CI, 1.43-7.37). Normalizing painful sex, considering pain to be inconsequential, prioritizing the partner\'s enjoyment, and gendered interactional pressures were the predominant themes in women\'s narratives.
Providers should ask about painful sex, if the woman continues intercourse despite pain, and how she feels about this as a means of assessing any sexual and social pressures.
Strengths include the use of social theory in nationally representative survey research to examine how contextual factors influence sexual health, but experiences were largely limited to heterosexual interactions.
Many women do not discuss painful sex with their partners, lack of pleasure is significantly more likely among this group, and gender norms and cultural scripts are critical to understanding why. Carter A, Ford JV, Luetke M, et al. \"Fulfilling His Needs, Not Mine\": Reasons for Not Talking About Painful Sex and Associations with Lack of Pleasure in a Nationally Representative Sample of Women in the United States. J Sex Med 2019; 16:1953-1965.

BACKGROUND: Vaginismus is poorly understood and relatively unknown among health care providers. For those who understand and treat vaginismus, few make an assessment of the severity of this condition. The importance of classifying the severity of vaginismus impacts the clinician\'s ability to diagnose and treat vaginismus, and understanding of the patient\'s experience.
OBJECTIVE: The aims of this paper are to identify the distinguishing features of severe grade 5 vaginismus, determine if vaginal spasm is present in severe grade vaginismus, and to establish qualifications for the Pacik grade 5 classification.
METHODS: Assessment of 553 referred or self-referred women who were unable to tolerate intercourse completed a comprehensive pretreatment questionnaire. Of those women, 391 underwent a vaginal examination in a certified surgicenter using sedation and anesthesia as needed.
METHODS: The main outcome measures were to detect the presence of a visceral reaction with an intended or actual gynecologic examination in Grade 5 patients, and to identify vaginal spasm on examination.
RESULTS: A visceral response reaction to routine gynecologic examinations, as well as spasm of the bulbocavernosum, occurred in patients with severe vaginismus.
CONCLUSIONS: Severe vaginismus with visceral response manifestations to routine gynecologic examinations, inability to have intercourse, and spasm of the bulbocavernosum is newly defined as severe grade 5 vaginismus. Pacik PT, Babb CR, Polio A, et al.
METHODS: Redefining Severe Grade 5 Vaginismus. Sex Med 2019;7:489-497.