Knowledge translation for a new understanding of sexual pain in endometriosis

Co-leads:

  • Paul Yong
    University of British Columbia
  • Jessica Sutherland
    BC Women's Hospital + Health Centre

Trainee:

  • Natasha Orr
    University of British Columbia

One in 10 reproductive-aged women have endometriosis (where endometrial cells abnormally grow outside the uterus). This can lead to menstrual cramps and pain during bowel movements, pelvic movements, and vaginal penetration. This project focuses on deep penetration pain during sexual activity, which profoundly affects relationships and the sexual quality of life of women with endometriosis.

The interdisciplinary team at the BC Women’s Centre for Pelvic Pain and Endometriosis uses surgical-medical treatments, cognitive behavioural and mindfulness based therapies, and physiotherapy to treat women with endometriosis and sexual pain. The centre also has an active CIHR-funded clinical and translational research program, with a focus on sexual pain. Endometriosis-associated sexual pain may be due to endometriosis lesions and/or central nervous system sensitization and treatment efficacy may depend on the specific cause of the pain. The concept that pain may be due to central nervous system changes, and not directly to the endometriosis, may be difficult for some patients to understand. Therefore, there will be a one-day workshop explaining the multifactorial causes of sexual pain and patients will be provided with tools to manage their pain. The aim is to include women from the centre and women from the community along with their partners. This workshop will be created in collaboration with patient partners from start to finish, ensuring the learning objectives are patient-informed and the event is appropriate for the target audience.

The goals of this project are to:

  1. Develop a one-day workshop targeted to patients with endometriosis and their partners.
  2. Measure the impact of the workshop on patient understanding by using a short self-reported questionnaire created with patient partners.

The long-term goal is to effectively translate research findings on central nervous sensitization to patients with endometriosis so they gain a better understanding of the causes of their sexual pain.