{"paper_id":"5678f8f9-236a-46fe-921d-29ff746e2e8a","body_text":"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. \n 1 \n ,  \n 2 \n  Some knowledge on the prevalence and characteristics of CPP exists, but evidence demonstrating convincing effect from suggested treatment is limited. \n 2 \n ,  \n 3 \n  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.\n\nThroughout 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. \n 1 \n  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. \n 4 \n  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. \n 5 \n  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. \n 6 \n  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. \n 7 \n  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.\n\nI have never talked to anyone about this. I thought I was the only one living with this kind of pain.  (Hannah, 28)\nI have never talked to anyone about this. I thought I was the only one living with this kind of pain.  (Hannah, 28)\nLiving with chronic pelvic pain may prove quite lonely. Sharing intimate and private details about pelvic health issues, with close friends or even with a partner, is for many people challenging. Patient  Hannah  is surely not alone. However, estimates of CPP prevalence from epidemiological studies vary widely, ranging from 5 to 26.6%, \n 3 \n ,  \n 8 \n ,  \n 9 \n ,  \n 10 \n  the huge variation most likely mirroring poor methodology, inconsistent definition and unvalidated screening tools. Many countries are missing epidemiologic data in the field of CPP, and there is a paucity of studies. \n 3 \n ,  \n 8 \n  We lack knowledge on age‐ and sex‐dependent variations and comparisons between pre‐ and post‐menopausal women. \n 8 \n  It is not clear whether the prevalence of CPP in women is indeed higher than in men. Many CPP patients, even those with a well‐known diagnoseable and treatable condition such as endometriosis, are never referred to a specialist. Studies also indicate that only 40% of women with CPP seek medical help. \n 11 \n  Consequently, we suspect that health registry data grossly understate the extent of the problem. Nevertheless, diagnostic codes from health registries serve as a basis for scaling health care. There is therefore a pressing need for the development and application of validated high‐quality tools for identification and assessment of CPP, as well as high‐quality studies assessing the true prevalence of CPP in the general population. Such knowledge not only provides caretakers with tools to identify persons at risk, but can also aid policymakers to allocate focus and resources to this patient group.\n\nI am so ashamed. I do not feel anything else down there anymore. Just the pain.  (Alex 33)\nI am so ashamed. I do not feel anything else down there anymore. Just the pain.  (Alex 33)\nThe evidence of adverse childhood experience as a source of unhealth, relational as well as problems with adherence to work life in adult life is clear and indisputable. \n 12 \n ,  \n 13 \n  A study of characteristics of women with CPP referred to physiotherapy revealed that 50% reported having experienced physical, psychological, or sexual abuse. \n 14 \n  Women with CPP are found to have a higher prevalence of psychological disorders compared to women without chronic pain, particularly depression and anxiety. Notably, this is not unique to pelvic pain, but is well‐documented across many other chronic pain conditions. \n 15\nIn the framework of phenomenology, researchers have been able to explore the connection between pain, lived life, and body experience. Qualitative research has contributed to a deeper understanding of how life events impact physiology, with a particular focus on the connection between adverse life experiences and disease. This gives us access to a different and deeper perception of the person living with a CPP condition, and puzzled together with knowledge from quantitative research, the image is slowly taking form. Validation of patient life, psychological disorders, and body experience is a key tool in understanding the complexity of CPP, and these must be addressed when choosing treatment strategies, preferably in a multimodal treatment approach. \n 15\n\nI wish the doctors would see me as a whole person.  (Janne, 60)\nI wish the doctors would see me as a whole person.  (Janne, 60)\nJanne 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.”\nRenè 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.\nIn 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. \n 16\nEAU guideline states that “ the philosophy for the management of CPP is based on a biopsychosocial model ,  a holistic approach with patients´ active involvement ”, \n 1 \n \n and recommended treatments are often multimodal requiring interdisciplinary clinical teamwork . \n 2\nThe 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.\n\nI am losing my job because of this. I have to sell my house, because I can't afford to keep it with my low income. I am not confident anymore that I will be able to return to my employer.  (Ellis 55)\nI am losing my job because of this. I have to sell my house, because I can't afford to keep it with my low income. I am not confident anymore that I will be able to return to my employer.  (Ellis 55)\nChronic pain in general is highly prevalent and reported in up to 30% of adults. \n 4 \n  The economic and societal burden of chronic pain through long‐term sickness absence and disability is well known and surpasses that of any other disease category. \n 17 \n  Chronic pain disproportionately affects women with low income and education and is thus a major driver of gender inequality and socio‐economic disparity in health. \n 18 \n  The global burden of chronic disease in general is increasing, and gynecological conditions rank second among causes of years lived with disability. \n 19 \n  Severe daily pain has a particular substantial negative association with labor force participation. \n 20 \n ,  \n 21 \n  Given that pain is the most significant contributor to productivity loss, and productivity loss is the major contributor to overall costs, others have recommended to prioritize pain control improvement in women with pelvic pain. \n 21 \n  Endometriosis‐associated pelvic pain is associated with reduced work productivity and a negative impact on daily activities. \n 22 \n  Still, more knowledge concerning the burden of reduced work capacity, short‐term sick‐leave, reduced long‐term labor force participation, and disability among women with chronic pelvic pain is needed. \n 23 \n  We need to know which factors predict sick‐leave and chronic disability in both men and women with CPP to target efforts better.\nThe need for more knowledge and clinical tools to meet the  societal challenges  from CPP is pointed out in the recent Norwegian Governmental report on Women's Health in Norway. \n 24 \n  The scope of future research should put emphasis on connecting registry data from the Work and Welfare authorities with health data, to better define the economic burden of chronic pelvic pain summing up through welfare benefits. Early interventions for persons with CPP to remain work‐adherent will also be economically beneficial for the individual.\nEllis  is on permanent sick leave after having failed pelvic surgery and now lives with chronic pelvic pain.  Ellis  has had to give up work as a nurse, probably heading toward a life on disability benefits. The income gap arising when moving from a middle‐ or low‐income job to disability benefit will be hard to cope with. We are not convinced that pain relief alone is sufficient to resume work as a nurse. Instead, a biopsychosocial approach considering etiology, social and economic situation, and offering professional support to accept and cope with chronic pain could be more helpful for Ellis.\n\nThe 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. \n 25 \n  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. \n 3\n\nI 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)\nI 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)\nScattered 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.\nHow 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 \n 26 \n  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. \n 27 \n  So‐called user‐centered design methodology \n 28 \n ,  \n 29 \n ,  \n 30 \n  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.\n\nThe 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.\n\nBoth authors conceptualized, drafted, and revised the Commentary.\n\nThe authors declare no conflicts of interest.","source_license":"CC0","license_restricted":false}