Discovering the true nature of chronic pelvic pain: Are we asking the right questions?

Kristine Amundsen, Heidi Tiller, Tiller H
Acta obstetricia et gynecologica Scandinavica · 2024 · vol. 103(12) , pp. 2330–2334 · doi:10.1111/aogs.14982 · PMID:39350572 · PMC11609983 · W4403045295
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⚙ AI-generated summary by claude@2026-06, 2026-06-08 ⓘ

This commentary argues for a multidisciplinary, biopsychosocial approach to chronic pelvic pain, emphasizing user perspectives to address knowledge gaps and move beyond traditional dualistic clinical methods.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-14 · read from full text ⓘ

This commentary discusses chronic pelvic pain (CPP) as a heterogeneous umbrella term and argues that current gaps in diagnostics and treatment evidence likely reflect an overly biomedical, quantitative-only research focus that may miss emotional, psychological, and social coping experiences. It highlights how ICD-11 distinguishes chronic primary versus secondary pain, introduces nociplastic pain concepts, and notes endometriosis as an example where nociplastic and nociceptive pain may co-occur, while emphasizing limitations such as widely varying CPP prevalence estimates due to inconsistent definitions and screening tools and under-referral for specialist care. The paper uses patient vignettes to underscore associations with adverse childhood experiences, depression/anxiety, and the need for biopsychosocial, multidisciplinary, multimodal approaches rather than dualistic mind–body thinking. Relevance to endometriosis: it explicitly cites endometriosis-associated pain as part of chronic primary pelvic pain syndromes and discusses endometriosis as a condition where nociplastic and nociceptive pain may co-occur, while advocating a biopsychosocial model for CPP management.

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Abstract

Chronic pelvic pain is a debilitating complex condition affecting men and women, but the knowledge gaps are salient. The condition impacts somatic, sexual, and mental health, as well as social, family, and work life. The complexity of the condition demands for a giant step away from traditional dualistic clinical approach. This commentary underpins the need to interweave multidisciplinary research within a biopsychosocial framework, as well as enhanced inclusion of the user perspective.
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Author

Both authors conceptualized, drafted, and revised the Commentary.

Cpp—A

I will not let anyone in this hospital touch me again. What they did to me was a total castration and not at all a good treatment for my condition. (Maya 41) I will not let anyone in this hospital touch me again. What they did to me was a total castration and not at all a good treatment for my condition. (Maya 41) Scattered patient voices are increasing in strength and volume. They should be encouraged to demand evidence‐based treatment and care applied in a personalized way with attention to context and individual needs. On the other hand, patients communicate their experience in different ways, and exploring patient experiences needs tailored skills. How can a patient like Maya interact with researchers and health care services to stimulate mutual understanding and exchange of ideas? In recent years, user involvement in clinical medicine and health care research has gained increasing attention and is now mandatory in clinical research in Norway 26 and involvement of users at an early stage in research projects is crucial to avoid “hostage capture” disguised as user involvement. The involvement of users may be challenged by individual patients' capacity to interact with researchers, limitations that may be caused by the condition that in itself is the target in research. Users of health care services sometimes express a dominant belief in the traditional biomedical model. This may potentially counteract the development of fruitful connections between users and researchers aiming at the development of new research ideas within a biopsychosocial setting. How can we optimize user involvement in CPP research? Facilitating exposure to current knowledge and research, thus increasing awareness of one's own knowledge and mindset, may be helpful. Involving all stakeholders (eg patients, spouses, health care providers, and researchers) and exploring their input and preferences in the design and research process is an important step. 27 So‐called user‐centered design methodology 28 , 29 , 30 could be explored in the context of CPP research. High‐quality user involvement in CPP research can contribute to a change of mindset in both caretakers and patients, in turn altering the way we think about CPP.

Cpp—Not

Throughout this commentary, we will use the term CPP according to the European Association of Urology (EAU) definition, namely chronic or persistent pain of more than 3 months duration perceived in structures related to the pelvis of either men or women. 1 Notably, the term CPP is not a homogeneous entity, but rather an umbrella term for many different symptoms and health problems with various causes, symptoms, and treatment options. The World Health Organization ICD 11th revision distinguishes chronic primary pain conditions, classified as syndromes where pain is the main symptom and considered as the cause itself, from chronic secondary pain conditions, which are pain conditions associated with another diagnosis. The term “syndrome” considers the emotional, cognitive, sexual, and functional consequences of chronic pain, as chronic pain generally correlates more strongly with “non‐biomedical” factors, such as mental vulnerability, work adherence, and socio‐economic status, rather than a biomedical origin. 4 Chronic primary pelvic pain syndrome (CPPPS) is a subdivision of CPP and includes conditions where no proven infection or other obvious pathology is found that can explain the chronic pelvic pain. Examples of diagnoses of CPPPS are chronic post‐surgical pain syndrome, endometriosis‐associated pain syndrome, primary vulvar pain syndrome, irritable bowel syndrome, and primary bladder pain syndrome. 5 Thus, although not yet completely embraced in the clinical landscape, the ICD 11th revision incorporates a biopsychosocial definition of pain. Another important development is the International Association for the Study of Pain (IASP)'s recent introduction of the concept of nociplastic pain as a third category of pain, with nociceptive and neuropathic pain making up the first two. Nociplastic pain denotes pain arising from altered nociception despite no clear evidence of actual or threatened tissue damage activating peripheral nociceptors, and no disease or lesion of the somatosensory system causing the pain. Patients may have a combination of nociplastic and nociceptive pain. 6 Terms previously used to describe concepts similar to nociplastic pain are central sensitization, centralized pain, or central pain amplification. Endometriosis is an example of a pelvic pain condition in which nociplastic and nociceptive pain may co‐occur. Some of the most common nociplastic syndromes include fibromyalgia, irritable bowel syndrome, and chronic primary pelvic syndrome in men and women, commonly with overlapping features and co‐occurring CNS‐associated symptoms such as fatigue and sleep disturbances. 7 The introduction and acceptance of nociplastic pain is important as it explains pain where previous biomedical models failed and led to unfair accusations of patients making their symptoms up.

Cpp—The

The personal burden of living with CPP is enhanced by patient complexity. Treatment itself, workload, and life in general cannot be assessed one‐by‐one, but all these factors interact and may accumulate and complicate patient care. 25 Let us go back to Hannah . She has thought about getting involved with a patient organization representing women with similar chronic pain conditions. But as her daily life already feels like a heavy load, trying to cope with work and family duties, she has no surplus in capacity. She has seen numerous doctors and other health personnel, each of them giving her new advice and recipes for treatment which she really struggles to adhere to. Balancing patient workload and patient capacity in CPP patients should be considered by both caretakers and researchers. The importance of early user involvement in research projects of this kind becomes imperative. 3

Conclusions

The knowledge gap concerning prevalence and societal impact of CPP is substantial. The individual and societal burden of CPP, patient experiences, and the risk of capacity overload in the individual should be included in future research. Funding of research prioritizing multidisciplinary design, as well as the increased focus on health care multidisciplinary team work in a biopsychosocial setting, will be a step in the right direction.

Cpp—Making

I wish the doctors would see me as a whole person. (Janne, 60) I wish the doctors would see me as a whole person. (Janne, 60) Janne has been living with chronic pelvic pain, urine and fecal incontinence after her second childbirth. She has met countless doctors and nurses. She struggles with depression and anxiety. The physiotherapist has tried to explain her that negative feelings and stress are connected to pain levels. Other caregivers have expressed sincere doubt about a possible connection. She is now convinced that her pain problems are “just in her head.” Renè Descartes (1596–1650) is acknowledged as the founder of dualistic thinking, which tends to reduce complex conditions into oversimplified mind vs body or physical vs psychological dichotomies. This reduction constitutes a barrier against understanding the interweaving between biological, psychological, sociocultural, and environmental factors. In the context of complex medical conditions, dualistic thinking must be challenged. We as caretakers must initiate research and education within a biopsychosocial and multidisciplinary framework where the components of complexity are recognized. 16 EAU guideline states that “ the philosophy for the management of CPP is based on a biopsychosocial model , a holistic approach with patients´ active involvement ”, 1 and recommended treatments are often multimodal requiring interdisciplinary clinical teamwork . 2 The development of this paradigm shift demands a breakdown of still existing extremely strong traditional bonds in medicine. Embracing the interconnectedness of body, feelings and experience, a biopsychosocial model and user perspectives would, in a broader sense, include a revised structure in the planning of architectural and interior design, organization map and management of hospitals and other points of care.

Introduction

Chronic pelvic pain (CPP) is an understudied area in human medicine. Salient knowledge gaps still exist in the areas of diagnostics, tailored treatment, and choice of pathways in care for the person suffering. 1 , 2 Some knowledge on the prevalence and characteristics of CPP exists, but evidence demonstrating convincing effect from suggested treatment is limited. 2 , 3 Although quantitative research provides valuable insights into many aspects of chronic pelvic pain, it may not capture the full range of experiences and coping mechanisms in individuals living with this condition, especially concerning the emotional, psychological, and social aspects. There is a paucity of research on how people living with chronic pelvic pain cope in everyday life, partnership, and work life. This commentary outlines that only through multidisciplinary studies, enforcing a combination of clinical empirical experience, quantitative and qualitative research, and the application of a biopsychosocial framework will be able to puzzle the complete image of CPP.

Coi Statement

The authors declare no conflicts of interest.

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