A new study from the University of South Australia is putting people's experiences of pelvic pain at the front of pain education to develop better pain management strategies and improved outcomes.
Persistent pelvic pain is an umbrella term for pain in the pelvic area (below the belly button) which may be accompanied by symptoms suggestive of gynaecological, lower urinary tract, bowel, sexual, and pelvic floor dysfunction.
In Australia, one in two women and people assigned female at birth experience persistent pelvic pain, with one in four reporting that pelvic pain affects their ability to undertake daily activities such as work, study, or exercise.
This study is hoping to improve this reality through pain education concepts that have been designed for and by females with persistent pelvic pain.
Using semi-structured interviews, the consumer-centric, qualitative study captures rich and nuanced experiences of 20 females with pelvic pain who had engaged in pain science education and seen improvements.
The study identified four important pain concepts that females say can help with pain management:
- A sensitised nervous system can lead to overprotective pain - this concept is important as it provides a biological explanation for pelvic pain and validates that pain is real, and not 'in your head'.
- Pain doesn't always mean my pelvis is damaged (although sometimes it does) - it is important because it provides reassurance that not every flare up means your pelvis is damaged or getting worse and that tissue pathology (like endometriosis lesions) is just one piece of the pelvic pain puzzle.
- How I think, feel, and 'see' my pain can make it worse - this concept speaks of how there are many factors that can influence pelvic pain. As such, there are many ways to manage pain beyond just medication or surgery.
- I can change my pain... slowly - this concept was important because it provided hope and empowerment to pursue pain improvement as a viable goal.
The findings follow the announcement for a landmark South Australian inquiry into endometriosis, and the Australian Government's 2022-23 Budget commitment of $58.3 million commitment to improving women's health, in particular endometriosis and pelvic pain.
UniSA researcher and PhD candidate Amelia Mardon says educating people about pain can help improve pain conditions.
"Learning how pain works is pivotal to managing persistent pain. But while preliminary evidence suggests that pain science education can help women with persistent pelvic pain, there has been little information about what these consumers value learning," Mardon says.
"This study addresses this gap by capturing people's experiences of persistent pelvic pain and identifying what knowledge could help others.
"By putting consumers' voices, experiences, and opinions at the forefront of any intervention, we're ensuring that pain education is relevant and aligned with their needs or priorities. Without that, it will just miss the mark."
Senior researcher, UniSA's Professor Lorimer Moseley says that learning 'how pain works', legitimises and makes sense of pain experiences.
"Validating pain may be particularly poignant for women with pelvic pain because of the extensive history of prejudice and dismissal of their pain, especially by healthcare professionals," Prof Moseley says.
"When you're told that your pain is 'all in your head', it's incredibly disempowering which can have significant effects on physical and mental health.
"Pain is complex. Understanding that there is a biological explanation for persistent pain - even when we can't 'see' it - can reframe perspectives of pain and potentially change outcomes."
While further research is needed with more diverse samples, including expert clinicians, this study hopes to provide clinicians with better supports to help women with persistent pelvic pain.
