For years, April lived with unexplained pelvic pain. “I suffered for a long, long time,” says April (not her real name), who shared her experience with urogynecologist Dr. Erin Kelly and her research team at the Dale Sheard Centre for Solutions in Women’s Health in Edmonton. For Jane (also a pseudonym), the symptoms began in elementary school. Constant pressure on her bladder was debilitating. “Doctors would kind of brush me off and say it was anxiety or a bladder infection that was never diagnosed,” she said. “I couldn't drive. I couldn't leave the house. I basically sat on the toilet and peed every two minutes. I was suicidal for a while because I couldn't get adequate pain control.” Accounts of delays and confusion echo throughout Kelly’s research into chronic pelvic pain, which affects as many as one in four Canadian women. From the beginning, we should have been engaging patients directly in the development of these educational tools. — Dr. Erin Kelly “What we hear again and again is that women have been living in uncertainty with these symptoms for a very long time,” says Kelly, who treats patients at the urogynecology clinic at the Lois Hole Hospital for Women, and also works as an associate professor in the University of Alberta Department of Obstetrics and Gynecology. She and her team aim to make pelvic health care more responsive to and grounded in women’s lived experiences, and to break the stigma around pelvic disorders, which delays care and diminishes research investment. “Our clinic is very unique. It is one of the few truly multidisciplinary urogynecology clinics in all of Canada. And then, right next door, the Dale Sheard Centre provides us with space and research support, so we can make our ideas reality.” Through interviews with patient participants, Kelly’s team explored how women engage with the educational materials they receive after a diagnosis. The feedback is consistent: patients want clear explanations of what is happening to their bodies, in language they can understand, and they want resources to help their partners, families and allies grasp what they are living with. Kelly’s research portfolio also includes studies evaluating the safety and outcomes of urinary incontinence treatments, including bladder Botox injections and sling procedures. In this work too, patient-centred health education is central, ensuring they understand their risks and options and can make informed decisions about their care. For Kelly, that begins with listening to women whose symptoms have too often been overlooked, and developing research that reflects their needs. “From the beginning, we should have been engaging patients directly in the development of these educational tools.” Story by Mary Frances Hill Another researcher at the Dale Sheard Centre, Dr. May Sanaee, leads a clinical trial of personalized, 3D-printed vaginal pessaries. While pessaries are the leading non-surgical treatment for pelvic organ prolapse — affecting up to half of Canadian women — traditional designs haven't changed in 50 years. Dr. Erin Kelly’s research is supported by the Alberta Women’s Health Foundation (AWHF) through WCHRI. The Dale Sheard Centre for Solutions in Women's Health is the home of women’s, children’s and pregnancy research at the Lois Hole Hospital for Women, and operates with support from Alberta Health Services, the University of Alberta and AWHF.
Photos by William Au Precision pelvic care
