Post-Treatment Endometriosis Pain Distress Syndrome (PEPDS): definition, symptoms, diagnostic criteria and questionnaire

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This paper defines Post-Treatment Endometriosis Pain Distress Syndrome as a proposed clinical construct characterized by persistent pain-related and emotional distress, including fear of recurrence and digital information stress, occurring at least three months after endometriosis treatment.

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This paper proposes Post-Treatment Endometriosis Pain Distress Syndrome (PEPDS) as a clinical construct to describe persistent pain-related and emotional distress lasting at least three months after the completion of surgical or hormonal endometriosis treatment. The authors integrate biopsychosocial, fear-avoidance, and disease recurrence theories to explain how factors such as central sensitization, medical trauma, and digital information stress reinforce one another to impair daily functioning. The study outlines specific diagnostic criteria and symptoms for this syndrome while explicitly noting that it is not yet an established diagnosis in ICD-11 or DSM-5 and requires further validation. This paper is centrally about endometriosis — specifically addressing the psychological and pain sequelae experienced by patients following their primary treatment interventions.

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Abstract

PEPDS (Post-Treatment Endometriosis Pain Distress Syndrome) is a proposed clinical construct describing persistent (at least 3 months) pain-related and emotional distress in people after completed surgical and/or hormonal treatment of endometriosis. Pain, fear of pain or recurrence, catastrophizing, medical trauma and digital information stress reinforce one another and impair daily functioning. The construct integrates the biopsychosocial model of pain, the fear-avoidance model and the theory of fear of disease recurrence. The central idea: after endometriosis treatment, some people remain in a “threat mode”. This may be driven by real residual pain, central sensitization or recurrence, as well as by learned pain anticipation, distrust of healthcare and an information environment (social media, search engines, AI chatbots) that can both support and amplify anxiety. Post-Treatment Endometriosis Pain Distress Syndrome (PEPDS) is a proposed clinical construct describing persistent pain-related and emotional distress (≥3 months) after completed surgical and/or hormonal treatment of endometriosis, characterised by pain anticipation, fear of recurrence, pain catastrophizing, medical trauma and digital information stress (social media and AI chatbot use), with functional impairment. It is not an established ICD-11 or DSM-5 diagnosis and requires validation.
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Post-Treatment Endometriosis Pain Distress Syndrome (PEPDS): definition, symptoms, diagnostic criteria and questionnaire Authors/Creators - 1. Sviatozar Melnyk - 2. Western Center for the Treatment of Endometriosis and Chronic Pelvic Pain - 3. Viktoriya Hudziak Fertility Management Center - 4. Hudziak clinic Description PEPDS (Post-Treatment Endometriosis Pain Distress Syndrome) is a proposed clinical construct describing persistent (at least 3 months) pain-related and emotional distress in people after completed surgical and/or hormonal treatment of endometriosis. Pain, fear of pain or recurrence, catastrophizing, medical trauma and digital information stress reinforce one another and impair daily functioning. The construct integrates the biopsychosocial model of pain, the fear-avoidance model and the theory of fear of disease recurrence. The central idea: after endometriosis treatment, some people remain in a “threat mode”. This may be driven by real residual pain, central sensitization or recurrence, as well as by learned pain anticipation, distrust of healthcare and an information environment (social media, search engines, AI chatbots) that can both support and amplify anxiety. Post-Treatment Endometriosis Pain Distress Syndrome (PEPDS) is a proposed clinical construct describing persistent pain-related and emotional distress (≥3 months) after completed surgical and/or hormonal treatment of endometriosis, characterised by pain anticipation, fear of recurrence, pain catastrophizing, medical trauma and digital information stress (social media and AI chatbot use), with functional impairment. It is not an established ICD-11 or DSM-5 diagnosis and requires validation. Files PEPDS_post_treatment_endometriosis_pain_distress_syndrome_Hudziak.pdf Additional details Additional titles - Alternative title (English) - A proposed construct for persistent pain-related distress after completed endometriosis treatment, including the role of social media and AI Related works - Is supplemented by - Report: 10.5281/zenodo.20364043 (DOI) - Report: 10.5281/zenodo.23208761 (DOI) - Report: 10.5281/zenodo.20952725 (DOI) - Report: 10.5281/zenodo.21006184 (DOI)

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