Collaboration is key in managing endometriosis

WHAT YOUR PATIENT IS THINKING Collaboration is key in managing endometriosis Heather Guidone describes how endometriosis affected many aspects of her life and how collaboration in care is key Heather C Guidone My journey with endometriosis started with severe menstrual cramping, irregular and heavy bleeding, and significant gastrointestinal distress and urinary dysfunction. What initially seemed like“bad periods” quickly became something much more disruptive, and as time went on my symptoms escalated. Debilitating, chronic non-menstrual pelvic pain began to dominate my days. Lower back and leg pain and excessive fatigue became a constant presence. Later, painful intercourse and infertility emerged as challenges. Over time, these symptoms took an increasing toll on my physical and mental health and wellbeing. Endometriosis was affecting everything from my earnings capability to my reproductive choices, self-esteem, and body image. Despite the persistence and severity of my symptoms, it was years before anyone linked them to endometriosis, and I was routinely assured my pain was “normal.” Following diagnosis and treatment through laparotomy, scant additional options were offered for management. Think beyond menstruation Healthcare professionals often treat endometriosis as just a“bad period.”My experience was that fertility was emphasised over pain relief, and pregnancy was “prescribed” as though it were a treatment. This came at a time when I was struggling with infertility linked to endometriosis. Treatment was approached in a one-size-fits-all manner that didn’t align with my needs, and health professionals did not engage me in conversations about my symptoms and goals. I was left feeling disempowered and unheard, compounding the isolation that already comes with living with a chronic, poorly understood disease like endometriosis. I would encourage health professionals to reflect on how to provide a truly patient centred approach. Listen without judgment. Consider a patient’s personal goals and daily challenges when discussing diagnostic and treatment options. Try to understand that endometriosis affects so much more than just the reproductive organs. Working together After decades of pain, more than 20 surgeries, and countless drug therapies, I finally connected with a specialist who changed everything. Combining excision surgery and postoperative collaboration with specialists in pain management, gastroenterology, urology, and pelvic health physical therapy, they devised a comprehensive care plan tailored to my needs and treatment directed goals. This brought immediate, dramatic, and longlasting relief. The path ahead lies in patient-physician collaboration to achieve the best possible outcomes for this complex, chronic illness. We must work together to dispel the persistent culture of misinformation and societal biases against endometriosis pain and symptoms, and ultimately prioritise the expertise of the real authorities on endometriosis: those living with the disease. What you need to know • Think beyond menstruation. Endometriosis is not just a “bad period” and can affect many aspects of a patient’s physical and mental wellbeing • Endometriosis manifests differently in each patient; treatment plans must be tailored to individual needs, preferences, and life circumstances • Interdisciplinary care and collaboration are key, with patients themselves holding important insights into how best to manage their condition and support others Education in practice • How do you address the patient’s personal goals and daily challenges in your approach to diagnosis and management of endometriosis? • How might you ask a patient living with endometriosis about their mental wellbeing? Competing interests: none 1the bmj | BMJ 2025;388:q2725 | doi: 10.1136/bmj.q2725 PRACTICE Patient author [email protected] Cite this as: BMJ 2025;388:q2725 http://doi.org/10.1136/bmj.q2725 Published: 31 January 2025 Protected by copyright, including for uses related to text and data mining, AI training, and similar technologies. . by guest on 21 May 2026 https://www.bmj.com/Downloaded from 31 January 2025. 10.1136/bmj.q2725 on BMJ: first published as