How The Endometriosis Community Is Coming Together To Make Change

It seems every day I am learning of a program, organization, or advocate that has started something new to help people with endometriosis. It’s extremely exciting and gives me so much hope for our future. So, today I am sharing with you how the endometriosis community is coming together to make change. Because at the end of the day, change can only happen if we amplify each other’s voices and stand strong against insurance companies, big pharma, and ACOG.

Non-profit Start Up’s

I truly admire those people who are so passionate about endometriosis advocacy and education that they take the time to start a non-profit organization/foundation. Other than doing the actual surgeries that can improve quality of life, non-profits are essential to seeing change.

Not only do they provide great resources, but their partnership is essential when approaching local governments to establish changes in policy, especially at the local level.

It’s incredibly admirable to see a group of people who have created an organization for the sole purpose of education, advocacy, resources, and/or research, and not for any personal financial gain.

These are just a few non-profit organizations that have started within the past few years by people who are passionate about the endometriosis community:

Doctors with A Passion for the Endometriosis Community

As an endo warrior, I am not blind to the horrible treatment given to people with possible or confirmed endometriosis. The medical system has failed one in ten people who experience debilitating pain from this disease.

But of the 30,000+ Ob-Gyn’s in America, only about 100-200 are true endometriosis specialists. And to this day, we do not a board certification that tells patients who the true experts are.

For several years I have led people to the many online lists of skilled surgeons who have been vetted by various groups and online platforms. Though these lists can be valuable, I have found that the best way to find expert care is to educate yourself on what makes a surgeon a true expert.

To help you navigate the learning, I have written a blog post that will help you understand the questions to ask a surgeon and what to look for in their answers.

Donated Excision Surgery

I also want to highlight the many physicians who donated a total of 18 surgeries to Endo Invisible earlier this year (2020).

A large barrier to care for endo patients is the cost of surgery. Since there are so few endo excision specialists, many endo warriors are forced to travel outside of their hometowns for the best care, which obviously comes at a high cost. Not only are they usually responsible for the cost of surgery, as many of these surgeons are out-of-network, they also bear the cost of travel, boarding, and meals away from home.

So, when the announcement of multiple generous donations by these physicians happened earlier this year, many endo warriors couldn’t be happier. Of course, if you’re interested in being considered for these donated surgeries or financial assistance for your excision surgery, you will have to apply by emailing EndoInvisible.

Regardless, these wonderfully generous surgeons deserve to be highlighted:

Dr. Cindy Mosbrucker
Dr. Andrea Vidali
Dr. Ken Sinervo
Dr. Jeff Arrington
Dr. Adam Duke

Advocates In The Endometriosis Community

Aside from the many patients who are sharing their heartfelt stories, many people with endometriosis are stepping up to become advocates in this community. Not only do they share their story, but they actively participate in educating their local and online communities about endometriosis.

One woman I must give so much credit to is Nancy Peterson, RN, of Nancy’s Nook Endometriosis Education. In this post, I am highlighting the many people, programs, and organizations that have started within the past few years. However, many of these people would not be where they are today (I know I wouldn’t be) without the amazing work that Nancy has done since starting her Facebook page in 2012. I am sure I am not alone in looking up to the amazing work she has done throughout the years.

Patient Advocates

Two other women I would like to highlight are Kate Boyce and Laura Kebert (i.e. the women behind The Endo Girls Blog). These two women exude exactly what it means to be an advocate and have gone the extra mile to become Board Certified Patient Advocates. This gives us the assurance that they are giving quality education in an ethical and safe way.

That said, I do want to note that as a Registered Nurse, Nancy Perterson’s license requires patient advocacy. I do not want to take away from the value of her license (and mine), by discussing the Patient Advocate Certification. However, for those who do not have a license requiring patient advocacy, becoming a Board Certified Patient Advocate is extremely honorable and worth applauding!

An additional and AMAZING resource is the My Illness Will Not Win community founded by Rosemarie Philip. Rosemarie is a Professional Certified Coach and advocate in the endometriosis community. She is an endometriosis, PCOS, adenomyosis, and Raynaud’s warrior. She has put together a FREE and comprehensive endometriosis course in collaboration with some of the most admired advocates in our community. This is truly the only course that I fully endorse without reservations. I recommend joining her free community for access to the endo course, but I also highly recommend her paid community, which has given me so much in personal health journey. She even has an option to apply for a reduce rate because she get’s that chronic illness can be financially taxing. You can learn more about the My Illness Will Not Win Community HERE.

Other advocates who are doing great things include:

Lauren R. Kornegay of Endo Black
Alexandra Camara of Yellowbowsxo
Jay Rishe of The Endometriosis Coalition
Casey Berna of caseyberna.com
Sallie Sarrel of Salliesarrel.com
Shannon Cohn of EndoWhat?

Patients In The Endometriosis Community

As mentioned, there are many patients who are openly sharing their stories, so I absolutely cannot leave them out. Because the truth is, their stories . . . your story . . . is extremely important to our community. It is your story that drives all this passion by the people mentioned above (and the many I didn’t).

It is your story that leads to other people thinking that maybe, just maybe, the answer to all their pain is endometriosis. It is your story that let’s another person know that they are not alone. Your story is the most important part in the greater picture of how the endometriosis community is coming together to make change.

Don’t you understand? You are an essential part to how we will move forward in education, advocacy, and research. So, reach out to any of the organizations and people above. Get answers to your questions. Stand up for the best endometriosis care; the care that you deserve. And when you find that you are comfortable with it, share your story. Tell people about all the amazing resources listed above and help us to create that domino effect that will help everyone in the endometriosis community.