Recap & Review - Living with Endometriosis in a World That Does Not Listen
Recorded on 19 September 2026, this E for Endometriosis quarterly Zoom session featured Dr Gurpreet Kaur, Global Women’s Rights Expert, Intersectional Gender Specialist, Researcher, TEDx Speaker and fellow Endometriosis Advocate, in a deeply relatable conversation about what it means to live with endometriosis in a world that may hear women speak but does not always truly listen.
For many people with endometriosis, living with the condition involves much more than managing symptoms, medical appointments, treatment and surgery. It can also mean repeatedly having to explain pain that cannot be seen, being disbelieved or dismissed, navigating stigma, continuing to work and care for others despite illness, and sometimes even beginning to question our own experiences.
This session explored why these experiences do not happen in isolation. Dr Gurpreet examined how gender, power, social expectations and institutional structures can shape whose pain is believed, whose knowledge is considered credible and what happens after a patient speaks.
During the session, Dr Gurpreet explored:
How gender stereotypes can influence the way women’s pain and symptoms are interpreted
Medical dismissal, medical gaslighting and the concept of medical misogyny
Testimonial injustice, where prejudice causes someone’s account of their own experience to be given less credibility than it deserves
The different forms of lived, clinical, research and institutional knowledge, and why they do not always carry equal authority
Why listening requires more than simply hearing someone or expressing empathy; meaningful listening also involves belief, credibility and appropriate action
The expectations placed on women to remain productive, care for others, maintain relationships and continue functioning even while living with chronic pain
Fertility and motherhood as matters of individual choice rather than assumptions that should determine how every woman’s endometriosis experience is understood
The impact of not being believed on diagnosis, treatment, employment, finances, relationships, mental wellbeing and trust in healthcare
The difficult double bind patients may face when communicating pain: appearing calm and articulate can make illness seem less severe, while visible distress may be dismissed as emotional or attention-seeking
Why learning to recognise and name patterns of dismissal can help patients advocate for themselves and reclaim some of their agency.
The Q&A brought many of these ideas even closer to lived experience. The conversation explored knowing when to continue fighting to be heard and when to stop exhausting ourselves trying to convince people who have already chosen not to listen. It also touched on dismissal within families, why women themselves can participate in normalising other women’s suffering, finding supportive communities, and the important question of whether women sometimes internalise these expectations and begin dismissing themselves too.
Perhaps one of the strongest messages from the session was the importance of recognising a woman as a credible knower of her own body. Lived experience does not replace clinical expertise, but neither should it automatically be subordinated or dismissed. Patients carry knowledge too, because they are the ones living within their bodies and navigating their condition every day.
This was an especially honest and validating conversation. For many of us who have experienced years of explaining invisible pain, trying to remain functional through illness or struggling to feel believed, there were moments that felt incredibly close to home.
Dr Gurpreet Kaur brings together her professional work in women’s rights and gender with her own lived experience of severe endometriosis. During the session, she openly shared parts of her journey, including years of debilitating pain, prolonged wheelchair use, multiple surgeries, a hysterectomy, career consequences, stigma and the impact endometriosis had on relationships and different areas of her life.
The session was moderated by Dr Helen Mojisola Erdt, or Moji, Research Scientist, E for Endometriosis volunteer and fellow Endometriosis and Adenomyosis Advocate. Moji guided the presentation and Q&A with calmness, thoughtfulness and sensitivity, helping to hold a safe and respectful space throughout the discussion.
We would also like to extend our heartfelt appreciation to Radhika, who supported the session by helping to manage and hold the Zoom chat throughout the programme.
A heartfelt thank you to Moji for guiding the session so calmly and thoughtfully, to Radhika for supporting the Zoom chat so attentively, and of course to Dr Gurpreet Kaur for such an open, powerful and deeply validating sharing.
We are grateful to each of you for helping create a safe and meaningful space for this conversation.
This session formed part of E for Endometriosis’ free quarterly Zoom initiative, created to make endometriosis-related education and conversations more accessible and to help patients, caregivers and the wider community feel better informed, supported and less alone.
For us at E for Endometriosis, conversations like this matter because awareness is not only about understanding what endometriosis is medically. It is also about understanding what it can mean to live with it: to navigate healthcare, family, work, relationships, expectations and systems while carrying symptoms that others may not be able to see.
Sometimes, validation begins simply with finally having the language to name what we have experienced.
And sometimes, being heard can be the beginning of reclaiming our own agency.
This recording is intended for general education, advocacy and awareness only and does not replace personalised medical, psychological, legal, workplace or other professional advice from an appropriately qualified professional.
Follow E for Endometriosis for more patient-centred education, advocacy and community support.
Website: www.endosupport.sg
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