The personal meaning-making of chronic pelvic pain in women who have survived sexual violence: Summary of findings
Research and summary by Catherine McCarter as part of my Clinical Psychology doctorate at UCL. The study had UCL Ethics Committee approval and was supervised by Dr Amanda C de C Williams. Please contact Amanda with any queries as my UCL email address will soon be closed: amanda.williams@ucl.ac.uk
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This summary of findings is written for the women who took part in the study, organisations and individuals who supported its advertisement, and anyone else who is interested. I am also pursuing publication and exploring various forums to share these results with clinicians.​Thank you to the women whose courage to speak inspired and enabled this research. Your stories broke my heart and elicited the angry energy I needed to write. I am delighted to share this summary with you.
The study: How do women survivors of sexual violence understand their pelvic pain?
I completed an in-depth study of women who have survived sexual violence and who also experience chronic pelvic pain. I was interested in speaking with women whose pain had been caused by sexual violence, or women who already had pain before sexual violence. The aim of the study was to broaden understanding of how women who have survived sexual violence make personal meaning of their chronic pelvic pain. We know that meaning of pain affects its intensity and impact on the individual.
How I did the study
I recruited ten women via social media and interviewed them about their experiences and understandings of sexual violence and chronic pelvic pain. I transcribed the interviews myself and used thematic analysis to find patterns within and across women’s narratives of pain and sexual violence.
What I found
Common themes in women’s narratives showed an interaction between the meanings of chronic pelvic pain and sexual violence.
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Responses by healthcare providers to women survivors of sexual violence who had chronic pelvic pain were often inadequate.
Women brought highly personal meanings to their pain, influenced by and interlinked with their experiences of sexual violence and others’ responses to their disclosures.
Importantly, shame from experiencing chronic pain compounded shame from surviving sexual violence to influence pain meanings for women.
Some women understood their pain as directly caused by sexual violence, with intense pain powerfully reminding them of trauma, even triggering flashbacks or being triggered by flashbacks.
Others understood their pain as a physical manifestation of psychological trauma and had found psychological therapy somewhat helpful with developing pain understanding and coping.
Some were uncertain if their chronic pelvic pain was linked to sexual violence, but had noticed similarities in the upsetting ways that others, including healthcare professionals, reacted to disclosures of either.
All women talked about rape myths, shaping narratives of victim blaming. For some, self-blame meant that they felt they had somehow caused or deserved their pain, and this made them less likely to seek support.
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Other people’s reactions to women’s disclosures of chronic pelvic pain or sexual violence affected the meanings for them. Those women who were disbelieved, or told to ‘get on’ with pain, or to keep sexual violence a secret, described the burden of carrying pain and trauma alone, or having to repeatedly request support after negative initial responses, particularly from healthcare professionals.
Gender bias in healthcare, and unlinked mental and physical health care, partially explained women’s experiences; many felt their pain was disbelieved or dismissed as unimportant by GPs and other clinicians, and some linked this to being a woman.
Women described their pain both being over-psychologised – attributing all physical problems to trauma and distress and failing to investigate the pain properly – and under-psychologised, addressing physical symptoms without reference to the psychological effects of either sexual violence or pain.
There was a frustrating absence in both mental and physical health care of constructive discussion and treatment of pain. Even where women had received a thorough physical investigation, a failure to elicit women’s pain meanings and integrate them into treatment that targeted the complex interaction of emotional and physical pain meant that many women felt unheard and misunderstood by their clinicians.
Most women found that their pain healthcare came to an end without any satisfactory resolution.
Exceptional care was described where treatment was multidisciplinary and encompassed the physical and the psychological together, when women were listened to and believed, and when clinicians worked collaboratively with women to find an acceptable pain explanation and course of treatment.
Women found ways to resist the simplistic, ‘one-size-fits-all’ ways they were talked about as women living with pain or women who have survived sexual violence, and held complex, integrated understandings of their own health.
Women kept trying to access adequate healthcare, requesting referrals from the GP after doing their own research, and trusting in their own self-knowledge. Women found ways to push back against the silence surrounding CPP and sexual violence. These included re-connection with their bodies, community organising, and taking control of the ways they were being talked about and with.
​How could these findings improve women’s encounters with healthcare professionals?
Ensure care is trauma-informed
Listen, believe, take time: Women described some exceptional clinicians who engaged with their suffering, so it is possible for clinicians to listen, believe, and spend time collaborating with women to explore solutions to their complex situations, rather than dismissing them as untreatable and troublesome.
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Connect physical and mental health: This research supports existing literature on patients’ desire to be understood as whole people, connecting mental and physical health, as in some multidisciplinary pain clinics. This seems essential when considering trauma and pain, and reflects a trauma-informed approach to health care. Women I interviewed lacked an explanation of pain that incorporated the way trauma acts on nerve pathways to change pain experience, although it could be given in primary care.
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Sensitively ask about past trauma: Women reported wanting clinicians to ask about abuse, rather than the patient having to start a conversation about it. A supportive, validating response to disclosure has a significant impact because it counteracts the way in which sexual violence is often normalised and minimised and opens up conversations about appropriate support and about how it might affect pain.​
Challenge rape myths
​Healthcare professionals’ attitudes: This study suggests that healthcare professionals, like anyone else, can believe rape myths and this needs to be robustly challenged. There is useful guidance from the Department of Health on how to respond to domestic abuse, and many of the lessons apply also to sexual violence.
Some suggestions for more research
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Women could collaborate with GPs to create guidance for GPs responding to sexual violence and chronic pelvic pain.
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Develop and pilot an educational intervention for healthcare staff to challenge rape myth acceptance, similar to those developed for jurors.
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Gather accurate data on the number of women living with chronic pelvic pain.
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Future clinical research should purposefully include women with complex social and emotional needs.