Misdiagnosed No More: 5 Resources for Women Who Suffer From Endometriosis

Your period isn’t supposed to be excruciating — there’s actually nothing normal about being in debilitating pain on a monthly basis. 

For a long time I was led to believe that missing school during my period was normal. That this was the price of womanhood. My mother went through it, so it was only natural that I would, too. It took fifteen years, multiple doctors, and a slew of systematic ups and downs to finally be diagnosed with endometriosis. 

The process drained me in every way, and put my fertility at risk. 

1 in 10 Women Worldwide

Endometriosis is when tissue similar to the inner lining of the uterus, also known as the endometrium, is found where it is not supposed to be. The condition affects 1 in 10 women of reproductive age. Celebrities like Crissy Teigan, Padma Lakshmi, Gabrielle Union, and Hasley have been candid about their struggles with the condition, causing a spike in awareness over the last several years. 

I wrote an intimate essay on my story for SELF after realizing that my decade-plus diagnosis timeline is all too common for women battling this condition.

Misdiagnosis of Endometriosis

Misdiagnosis and its consequences are a multi-layered problem. While some endometriosis symptoms are common — extremely painful periods, inconsistent menstruation, exaggerated bloating, food sensitivities, sexual discomfort, and inflammation — others can be more enigmatic, mimicking conditions like sciatica, IBS, cysts, fibroids, or migraines. 

A doctor often misdiagnoses or dismisses potential endometriosis cases due to lack of knowledge, and an official endometriosis diagnosis can only be done surgically (which is expensive, creating an extra burden for underserved and uninsured populations). This perfect storm of factors can make coping with the condition, or simply trying to figure out if you have it, a very bumpy road. 

So to help other women who are in search of a diagnosis or are in need of a community to share their story with, I’ve provided a list of helpful websites and social media accounts that serve endometriosis (aka, the “endo warrior”) community.

1. Nancy’s Nook

Nancy’s Nook is an “endometriosis learning library” that began as a chat and expanded into a Facebook group. The Nook compiles “individual experiences, research articles, and expert opinions” to help women with endometriosis make educated decisions around their health. 

2. The Endometriosis Foundation of America 

EndoFound is a 501(c)3 non-profit organization at the forefront of endometriosis research and advocacy. It hosts an annual gala to help raise crucial funds for endo research while also publishing blog articles and awareness campaigns. 

3. Endo What?  

A must-see film for women’s health advocates and those who suspect or know they have endometriosis. It explores what might cause endometriosis while also sharing diverse patient stories. 

4. The Endo.co 

A 501c3 non-profit whose #1in10 social media campaign is a viral success. They strive to educate and empower the community, often recruiting men to join in the cause. 

5. The Worldwide Endo March 

Since launching in 2014, the Worldwide EndoMarch is the “largest, internationally-coordinated endometriosis coalition in the world, representing over 100 organizations, groups, and medical societies.” Check them out to find a local march near you.

Gone are the days of having to suffer alone and in silence. Your pain is not all in your head. Your discomfort and suffering is real, and it has a name: endometriosis.