Summary
Jen Moore, aka Jen.dometriosis on social media, is an endometriosis and adenomyosis educator, speaker and campaigner. Following her 22 year long battle for a diagnosis, she now helps others suffering with these conditions, as well as working to create change on an institutional level.
She has worked with the BBC, NHS, University of Cambridge, and global pharmaceutical companies; as well as contributing to research, books and consulting for national charities. Jen is a UN Women UK delegate for the 68th Commission on the Status of Women, where she is determined to include endometriosis and adenomyosis in these vital and high level discussions.
Jen is also the founder of two Endometriosis based research projects. The first, Endo Education, is looking at the current state of medical teaching in the UK when it comes to endometriosis. The second, the They Said What?! project is a deeply personal piece of work, collating the lived experiences of medical misogyny faced by those suffering with the disease.
In this episode, Kathleen chats with Jen, about her journey with endometriosis and adenomyosis. They discuss the importance of accurate information and definitions, the impact of misinformation and lack of education, the role of healthcare professionals in education, the hope for change and future generations, and the importance of sharing personal stories and accurate information on social media. Jen shares her experience of upskilling and educating herself on endometriosis and adenomyosis and provides advice for others who want to do the same. This conversation covers topics such as misinformation and media influence, the power of social media, the "They Said What" project, the impact of medical gaslighting, raising awareness for adenomyosis, and the emotional journey of a hysterectomy. It also discusses the complexities of post-surgery pain.
Takeaways
Be cautious of misinformation and sensationalised headlines in the media and on social media. Stay curious, ask questions, and think critically about the information you come across.
The They Said What project aims to document and amplify experiences of medical gaslighting and dismissal in women's healthcare. It highlights the need for change and exposes the widespread issue of medical mistreatment.
Adenomyosis is a condition that is often overlooked and misunderstood. More awareness and research are needed to address the impact of adenomyosis on individuals' lives.
The emotional journey of a hysterectomy can be complex, and individuals may experience conflicting emotions. It is important to provide psychological support and acknowledge the significance of the choice to undergo a hysterectomy.
Post-surgery pain can persist even after a hysterectomy and excision, and additional work may be required to address other pelvic pain generators. It is essential to have realistic expectations and explore all available tools for pain management.
Jen's Website https://www.jenmoore.co.uk/
Jen on Instagram https://www.instagram.com/jen.dometriosis/
They Said What Submissions https://www.jenmoore.co.uk/projects/theysaidwhatproject
They Said What?! Instagram https://www.instagram.com/theysaidwhatproject/