<p>Patient–Physician Interactions Regarding Dyspareunia with Endometriosis: Online Survey Results</p>

Abstract

Introduction: Dyspareunia can be a debilitating symptom of endometriosis. We performed this study to examine women's experiences with painful sexual intercourse, the impact of dyspareunia on patients' lives, and perceptions of interactions with healthcare practitioners. Methods: An anonymous 24-question online survey was provided through the social media network MyEndometriosisTeam.com and was available internationally to women aged 19-55 years who were self-identified as having endometriosis and had painful sexual intercourse within the past 2 years. Results: From June 13 to August 20, 2018, 860 women responded and 638 women completed the survey (United States, n = 361; other countries, n = 277; 74% survey completion rate). Respondents reported high pain levels (mean score, 7.4 ± 1.86; severity scale of 0 [no pain] to 10 [worst imaginable pain]), with 50% reporting severe pain [score of 8 to 10]). Nearly half (47%) reported pain lasting ≥24 hours after intercourse with the pain often leading to avoiding (34%) or stopping (29%) intercourse. Pain impacted patients' lives, causing depression (61%), anxiety (61%), low self-esteem (55%), and relationship strain. Many women feared to seek help (10%). Of those women who approached practitioners, many (36%) did not receive effective treatments. Discussion: Women with dyspareunia related to endometriosis experience severe pain that can negatively impact patients' lives. Dyspareunia may be a challenging topic for discussion for both patient and practitioner, leading to a suboptimal treatment approach and management. Results suggest that practitioners need improved education and training regarding dyspareunia to evaluate and treat patients' sexual pain caused by endometriosis.

The Subjective Experience of Dyspareunia in Women with Endometriosis: A Systematic Review with Narrative Synthesis of Qualitative Research

“…Patient-physician communication regarding dyspareunia is also a neglected topic. As recently reported by Witzeman et al [42], this type of communication is often inefficient for several reasons. For instance, healthcare practitioners may be reluctant to discuss women's sexual problems for fear of embarrassing the patients or themselves, or for religious beliefs.…”

Impact of endometriosis on women’s life decisions and goal attainment: a cross-sectional survey of members of an online patient community

“…This portion of the survey was modelled after a validated instrument created to measure life-course impact of disease in patients with psoriasis. 25 This tool was used as a starting point for model development as it has been validated for another chronic disease with excess psychological and psychosocial burden, has been used clinically and was published in the scientific literature. Survey questions were rotated to avoid any bias introduced by order of answer selections.…”

“Why Would I Talk To Them About Sex?”: Exploring Patient-Provider Communication Among Black Women Experiencing Sexual Pain

“…Despite the CDC (2021a, 2021b) and other national organizations (National Coalition for Sexual Health, 2016) having published guidelines for taking health histories and encouraging healthcare providers to routinely have sexual health discussions with all their patients, providers tend to avoid discussing patients' sexual health (Sorenson et al, 2018). In fact, a 2012 study found that only 40% of obstetricians/gynecologists (OBGYNs) discuss sexual difficulties with their patients (Sobecki et al, 2012), despite most women suggesting that having a provider initiate the conversation about sexual pain would've made them more comfortable with disclosure (Witzeman et al, 2020). However, when providers initiate conversations about sexual health, they are more likely to ask questions about birth control use and sexual risk behaviors, than sexual functioning and difficulties including painful sex (Townes et al, 2020a).…”

“…However, when providers initiate conversations about sexual health, they are more likely to ask questions about birth control use and sexual risk behaviors, than sexual functioning and difficulties including painful sex (Townes et al, 2020a). Conversations about sexual pain are often more complicated than conversations about sexual health in general because of the societal normalization of painful sexual intercourse in women (Witzeman et al, 2020). Women often may be too embarrassed, feel shame, or uncomfortable (particularly with male physicians) with discussing sexual pain, so they refrain from disclosing their pain to medical providers.…”

“…Women often may be too embarrassed, feel shame, or uncomfortable (particularly with male physicians) with discussing sexual pain, so they refrain from disclosing their pain to medical providers. Among a sample of women with endometriosis who experienced dyspareunia (recurring genital pain during sexual intercourse), over half mentioned that their provider never talked to them about sexual pain (Witzeman et al, 2020). Although nearly 78% of women said that they talked to their provider about their sexual pain experiences, there were still barriers to disclosing and having vulnerable conversations about pain including embarrassment, feeling uncomfortable, and not believing that they could be helped (Witzeman, et al, 2020).…”