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A New Patient-Centred Resource about Endometriosis and Painful Sex
Oct 14, 2021 by Kiran Parmar, Research Assistant and Heather Noga, Research Program Manager at the Endometriosis and Pelvic Pain Laboratory, University of British Columbia
Endometriosis is an inflammatory condition where tissue, similar to the endometrial lining, starts growing outside of the uterus. Endometriosis affects 1 in 10 women and an unmeasured number of gender diverse people. Common symptoms include pelvic pain during menstruation, chronic pelvic pain, pain with bowel movements and urination, reduced fertility and abnormal bleeding.
Deep dyspareunia, pain with deep vaginal penetration, affects approximately 50% of people with endometriosis . Repeated experiences of pain with sex can lead to unpleasant and unfulfilling sexual experiences, avoidance of sex, reduced sexual quality of life and feelings of guilt and anxiousness. Despite the significant physical and psychosocial burden of painful sex, it is considered to be a neglected symptom of endometriosis .
Pain can be managed, but the stigma of reduced sexual function and the prevalent misconception that pain is normal can prevent patient-provider discussions about painful sex. To address this issue researchers at the Endometriosis and Pelvic Pain Laboratory, in collaboration with Endometriosis.org, Endometriosis Network Canada and patient partners, have developed an online resource for people with endometriosis that experience painful sex. Our aim is to destigmatize the condition, reduce feelings of isolation and empower people to seek healthcare support.
Sex, Pain and Endometriosis (https://endopain.endometriosis.org/) is a patient-centered website inclusive of audiences diverse in age, ethnicity, gender identity, relationship status, sexual orientation and endometriosis diagnosis. This website contains the biological and psychological causes of endometriosis-associated dyspareunia as well as pain management options written in plain language, with interactive images, and video explanations.
It includes answers to commonly asked questions like, “Will I ever be able to have pain free sex?” and “Does endometriosis affect my chances of getting pregnant?” On the resources page, they include links to local endometriosis support networks, podcast episodes and tips on safe sexual positions for better sex.
The Endometriosis and Pelvic Pain Laboratory has collaborated with patient partners to develop digital stories about the lived experiences of endometriosis and painful sex. Join them on Facebook Live on October 21st from 6:00-7:00pm PST for a virtual screening of 6 digital stories of love, loss, pain, hope and resilience from endometriosis warriors followed by a panel discussion with the storytellers themselves. Visit: https://www.facebook.com/events/528725661655070/.
1. Yong PJ. Deep dyspareunia in endometriosis: A proposed framework based on pain mechanisms and genito-pelvic pain penetration disorder. Sex Med Rev 2017; 5(4), 495. https://doi:10.1016/j.sxmr.2017.06.005.
2. Witzeman K, Antunez Flores O, Renzelli-Cain RI, Worly B, Moulder JK, Carrillo JF, & Schneider B. Patient-Physician Interactions Regarding Dyspareunia with Endometriosis: Online Survey Results. J pain res 2020; 13, 1579–1589. https://doi.org/10.2147/JPR.S248887.