Before I was diagnosed with endometriosis, I did not seek out much information online. I read the Endometriosis Association’s books, and other books I found on endo, but without the ‘official’ surgical diagnosis, I felt like I had no business popping up in forums and support groups to discuss my pain.
I want to tell you to PLEASE, DO NOT MAKE THE SAME MISTAKE I DID!
If you suspect you have endometriosis, you have EVERY RIGHT to be present online in the forums and support groups! Educate yourself as much as you can about endometriosis. Start trying out dietary and safe alternative medicine remedies NOW rather than endure more pain out of not knowing what to do.
While laparoscopy is currently the ONLY way to officially diagnose one with endometriosis, it does you no harm to get educated now to know what to expect – what to brace for – and how to cope with this horrible illness.
Below you will find a wealth of support available to you.
Facts and Stats
Guidance
- Travels With Pain – Helping travelers with hidden disabilities explore the world
- The Invisible Disabilities Advocate
- The American Association of People with Disabilities (AAPD)
Support Forums
- DailyStrength Endo forum
- MedHelp Endo Forum
- Endometriosis forums on Facebook
- Reddit Endometriosis community
- Patients Like Me
- But You Don’t Look Sick? (She also has endo merch!)
- Endometriosis.uk.org – U.K. Support Groups
- EndoQueer – LGBTQIA+ Led Support for Endometriosis and Similar Illnesses
- EndoBlack – A Black-women-led organization advocating for African American women and women of color affected by endometriosis
- Endometriosis.org – A list of endometriosis organisations from around the world
