Australian research highlights gaps in pain validation, trauma screening, health literacy, and illness perceptions.
Women with chronic pelvic pain often experience delayed help-seeking, a lack of validation by practitioners, and suboptimal screening for sexual abuse, new Australian research has reported.
Nearly 43% of participants said their pain had not been validated by a healthcare provider, despite clinical guidelines recommending that people with CPP receive validation of their symptoms.
The cross-sectional study enrolled 465 Australian women with chronic pelvic pain (CPP), defined as pain in the lower abdomen and/or pelvis, including genitalia, lasting at least six months.
While 64.3% reported pelvic pain onset before age 18, only 36.4% sought care as adolescents. Once CPP was reported, 42.9% of women felt their pain was not validated by their provider and 45.6% were not asked what they believed might be causing their pain.
Most (85.6%) participants experienced pain both between and during menstruation and a third reported a history of sexual abuse, although only 25.6% reported having been screened for it.
Global population prevalence estimates suggest 6%–27% of women and girls are affected, which the authors noted was a likely underestimation. The burden of CPP can be substantial; it’s been associated with gynaecological, bladder, bowel, pelvic floor, and sexual dysfunction, as well as adverse cognitive, behavioural, and emotional outcomes. It can affect relationships, education, and work and has been associated with significant healthcare and productivity costs.
The median participant age was 29 years (range 18–75) and 92.3% were Caucasian. They were excluded if, in the 12 months prior, they had been treated for an STI, cancer, or had been pregnant.
Participants were asked about their beliefs and experiences related to diagnosis, healthcare practitioner interactions, assessments undertaken, and CPP management. The questionnaire was based on clinical practice guidelines such as the European Association of Urology (EAU) guidelines on CPP. Pain severity and interference were evaluated with the Brief Pain Inventory (BPI) and illness perceptions were assessed with the Brief Illness Perception Questionnaire (BIPQ).
“Unfortunately, I think this study confirms what is already suspected and known about people’s experiences with chronic pelvic pain, not only in Australia but globally,” Dr Amelia Mardon, Research Fellow at Adelaide University, told The Medical Republic.
“Studies such as this provide valuable insights into the broader impacts of pelvic pain, beyond the experiences of an individual patient in a consultation room.
“The findings illustrate how delayed help seeking and invalidation have ramifications on their pain and their perceptions of themselves.”
The paper highlighted four key areas of clinical significance.
Pain validation
Clinical guidelines recommend that CPP can be managed using a working diagnosis without repeated or unnecessary investigations, while emphasising the importance of validating patients’ pain.
However, the findings suggested a disconnect between these recommendations and patients’ experiences, with 42.9% reporting that their pain was not validated by their healthcare provider.
The researchers said validation, together with understanding what patients believe is causing their pain, was important for establishing a therapeutic relationship and supporting effective chronic pain management.
Previous research has suggested that dismissing or normalising menstrual pain during adolescence may contribute to concerns and difficulties later in life, while failure to acknowledge the impact of symptoms on quality of life can contribute to dissatisfaction with care.
Dr Mardon said repeated invalidation could have consequences beyond an individual consultation.
“In regard to invalidation, I think it is important to recognise that when people repeatedly have their symptoms dismissed, minimised, or normalised, this can affect not only their willingness to seek future care but also their trust in healthcare systems more broadly,” she said.
“Delays in diagnosis and treatment can have significant consequences for quality of life, while ongoing invalidation may contribute to feelings of frustration, isolation, and self-doubt. The longer pain goes on, often the worse it becomes so early recognition, diagnosis and appropriate pain care is so critical to stop the compounding impacts of pelvic pain,” Dr Mardon said.
The researchers suggested that participants’ experiences could partly reflect limited confidence among some healthcare practitioners in managing CPP, as well as insufficient attention to patients’ beliefs and treatment goals.
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Screening for sexual abuse
A history of sexual abuse was reported by about one-third of participants, compared with an estimated prevalence of around 15% in the general population, according to the researchers.
While guidelines recommend screening people with CPP for a history of sexual abuse, the researchers noted only 25.6% of the cohort said they had been screened.
Dr Mardon said the findings highlighted the need for clinicians to consider trauma when assessing people with CPP.
“One thing this study highlights is the lack of healthcare professionals enquiring about experiences of sexual abuse and the potential link to chronic pelvic pain. There is emerging research linking abuse, whether sexual in nature or otherwise, with pelvic pain and chronic pain more broadly,” she said.
“This does not suggest that abuse causes chronic pain per se, but it may contribute to the persistence or chronicity of pain. These findings further emphasise the importance of trauma-informed care, particularly given the concerning prevalence of sexual abuse among women.”
A history of sexual abuse was also associated with greater pain severity and interference in the study’s univariable analyses.
The authors noted that trauma-related responses such as somatisation and dissociation could potentially contribute to altered pain processing in people with CPP.
They also warned that if previous trauma is not recognised, invasive investigations or treatments could potentially trigger traumatic memories or contribute to further trauma.
Illness perceptions
The researchers also examined whether participants’ beliefs about their illness were associated with the severity of their pain and the extent to which it interfered with daily life.
After adjusting for potential confounders, more threatening illness perceptions were associated with both greater pain severity and greater pain interference.
For pain severity, each one-point increase in the BIPQ score was associated with a 0.07-point increase in the BPI severity score (95% CI 0.05–0.09). The association was larger for pain interference, with each one-point increase in illness-perception score associated with a 0.15-point increase in interference (95% CI 0.12–0.18).
Pathology was the most frequently cited explanation for participants’ own pain, reported by 77%, followed by menstruation at 61%. More than half (55.7%) also believed they needed further investigations or procedures, despite many having already undergone multiple assessments.
The researchers said these findings could point to an important aspect of CPP management, with patients’ understanding of their condition potentially influencing their experience of pain and its impact on daily life.
While 66% felt their diagnosis was correct, 38% believed that something ‘worse’ was happening. Most (59%) reported pain medication to be helpful, though this was reduced to 38% for hormone therapy. Access to care was reported as difficult by 77% of participants and only 61% felt socially supported.
The findings, the researchers said, highlighted the importance of addressing not only the physical aspects of CPP but also patients’ understanding of their condition, expectations around investigation, and experiences of healthcare.
Education and messaging
The researchers said better education could help reduce delays in recognising CPP and seeking care, particularly among adolescents.
“Education programs may reduce the culture of secrecy that is often associated with CPP, and provide information on what is normal versus when to seek help. Online delivery of such programs may provide trustworthy menstrual health literacy information for adolescents,” they wrote.
Dr Mardon agreed that improving menstrual health literacy could be particularly important in helping young people distinguish between expected menstrual symptoms and pain that warrants medical assessment.
“Improving menstrual health literacy is so important to countering the effects of delayed help seeking with pelvic pain. Coupled with invalidation by healthcare professionals, poor menstrual health knowledge makes it difficult for individuals to recognise when their symptoms warrant medical attention,” she said.
“It’s also important to note that this is not the fault of women themselves. Society framing menstrual health and pelvic health as something taboo, embarrassing, and ‘gross’ contributes greatly to this. We need to have more frequent and open discussions about menstrual health so future generations understand that pelvic pain is not normal and not something to endure.”
“In addition, improving education for families, schools, and healthcare professionals is an important step towards earlier recognition of pelvic pain conditions and reducing delays in care.”
The researchers also noted that comprehensive chronic pain management should include explaining that pain can occur even in the absence of identifiable pathology or tissue damage.
Authors highlighted the World Health Organisation’s Comprehensive Sexuality Education as a resource for educators seeking to promote understanding of healthy sexuality and when to seek help.
