Endometriosis Support
Endometriosis can be really isolating, so it’s important to be in community with and have support from people who share similar identities and experiences that we do. Here’s some resources I’ve used or haven’t used, but have heard others recommend.
Important: I don’t know about the accuracy of all endometriosis facts/info given via these links. I recommend these specifically for community support, but encourage you to learn your endometriosis facts from the resources I’ve provided in my Endometriosis Education page.
Additionally, some of these resources may use gendered language when talking about endometriosis.
Community
- Endo Queer – LGBTQIA+ Led Support for Endometriosis and Similar Illnesses.
- 2SLGBTQQIA+ RESOURCES – From the Endometriosis Network Canada.
- LGBTQIA+ Resources – From Nancy’s Nook.
- Endo Siblings Support Group: for Trans and Enby People with Endometriosis – FB group.
- Endometriosis South Coast – an inclusive charity set up to support people who are going through the diagnosis stages of Endometriosis and Adenomyosis or have been diagnosed with the conditions.
- ENDO Black – “Endo Black, Inc. is a black-women-led organization advocating for African American women and women of color affected by endometriosis.”
- How to support Black Canadians with endometriosis – From the Endometriosis Network Canada.
- Medical Herstory YouTube – Award-winning, youth-led, international not-for-profit organization advancing gender health equity through storytelling, patient advocacy, medical education, and undoing stigma. Their website here.
- A Life Well-Loved with Chronic Illness – a learning & coaching space to create the full life you were meant to live, chronic illness and all.
- Endo Southwest – In person support group in Colorado.
Articles
- Parenting is Hard, Even Harder with Endometriosis – From Nancy’s Nook
- Kristina Kasparian, PhD – She has several well written articles on endometriosis on the Medium.
- Treating Endometriosis as a Women’s Disease Hurts Patients of All Genders by Emily Lipstein
- Mediating Pain: Navigating Endometriosis on Social Media by Eileen Mary Holowka
Videos
- ENDO GIRL – a short documentary on Endometriosis– “Brought to life through the medium of dance, the film is shocking, violating and takes the audience on a vulnerable journey, exposing what lies beneath the surface of one in 9 women worldwide.”
- Endometriosis_Crusaders YouTube Page – From Dr Shilpa Rao, an endometriosis patient, and Dr Vimee Bindra, an excision surgeon.
- Below the Belt – “In the personal & inspiring stories of four patients urgently searching for answers to mysterious symptoms, Below the Belt exposes widespread problems in our healthcare systems.”
Books
- When I Bleed: Poems about Endometriosis by Maggie Bowyer
- Finding Peace with a Devastating Disease: Reflections on Endometriosis by Amy Corfeli (this is my book!)
- The Palgrave Handbook of Critical Menstruation Studies– Multi-disciplinary, genre-spanning and critical examination of the cultural, psychological, political and social aspects of menstruation. Open access and free.
- BLEED: Destroying Myths and Misogyny in Endometriosis by Tracy Lindeman
- Good Girl, Bad Period.: Breaking the Silence on Misogyny and Gaslighting through the Lens of Endometriosis by Silvia Young
- Check out my Goodreads profile for a list of books I recommend on DBT, mindfulness, mental health support, and more.
- Check out the Recommending Reading List from the Endometriosis Association of Ireland
- My Invisible Friends – a children’s book by Nikki Box
Podcasts
- Not Cha Momma Pod – “Join Kailey and Betsy as they share their raw, honest, and personal experiences with endometriosis and adenomyosis diagnoses that led to infertility in their 30s. Despite being kid-free/less, these powerful women are finding joy in the journey and creating a community for fellow warriors who aren’t afraid to address the taboo topics that come along with a chronic illness.” They also have a monthly virtual support group on Zoom.
- The Cycle – “A podcast about Endometriosis, with a goal not only to share endometriosis stories, but to create a community to help others who are suffering.”
- Unheard of – This short podcast series seeks answers to some of the biggest questions posed by the endometriosis community.
- Not Defined by Endo – “Hosted by Endometriosis Warrior Teniola Ogunro, is created for and dedicated to women who have been diagnosed with endometriosis or who suffer from symptoms that they suspect to be caused by it.”
- Endo Worldwide – “Femninist Endo Writer and published Author (German & Polish) Martina Liel interviews Endo Advocates from all over the world to challenge myths and misconceptions about the underrecognized and underrated disease Endometriosis.”
- Invisible Iconic Podcast – “Sharing our experiences with invisible chronic illnesses”
- Best Worst Club – Endometriosis Life – “Best Worst Club – we all hate that we have endometriosis in common. But we couldn’t be on this journey with anybody more resilient or empathetic then the warriors that make up our club. Think of this podcast as your space to be understood, uplifted and plugged into the thriving endo- community. Join host and fellow endo warrior, Mariah Battaglia to contribute to spending awareness of our realities and calling out the systemic injustices we face.”
Helpful Products
- Eighty-Six the Endo Weekly Planner – This planner “was made to help you thrive in all aspects of life, because you deserve to have a tool that can help you tackle life with endometriosis.”
- Fierce Fearless Apparel – Endometriosis, Chronic Illness, & Mental Health Apparel
- Innabox Design – Cute and witty gifts for spoonies!