The Endometriosis Coalition

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The Endometriosis Coalition

We are a 501(c)(3) non-profit organization
with a mission to raise awareness, promote reliable education, and increase research funding for Endometriosis.

The Endometriosis Coalition was founded in March of 2017 by Jenneh Rishe.

05/22/2026

40 looks beautiful on you, Jenneh. ✨

Today we celebrate not just a birthday, but the fierce woman behind a movement.

Before The Endo Co became a community, a resource, a safe space, or a brand recognized by so many within the endometriosis world… it was simply you — showing up honestly, vulnerably, and determined to create something you wished existed for yourself.

Through every conversation, campaign, event, your book, and piece of advocacy, you reminded people with endometriosis (and many other conditions) that they were worthy of being seen, heard, believed, and cared for.

You turned pain into purpose, community into impact, and your vision into something that continues to help people feel less alone every single day.

Your 40th chapter is not just a celebration of age, but of the resilience, leadership, softness, brilliance, and legacy you leave behind.

Thank you for all that you built.
Thank you for all that you were.
And thank you for continuing to create space for this community to heal, connect, and thrive through everything you created.

Happy Heavenly 40th Birthday, Jenneh. 💛

Your impact lives on endlessly.

04/16/2026

Today, we hold space for the life and legacy of Jenneh Rishe.

Jenneh’s impact on the endometriosis community is immeasurable. Her voice, her advocacy, her faith, and her unwavering commitment to showing up for others created a sense of belonging and direction for so many of us.

In the midst of this profound loss, we are reminded of the community she helped build, one rooted in compassion, honesty, and strength. Her light reached far beyond what words can fully capture, and her presence will continue to be felt in the lives she touched and the work she inspired.

We know many have been looking for ways to honor her life and gather in remembrance. Service information can be found here: https://bit.ly/4tWKTJg.

Details regarding a livestream for the in-person ceremony will be shared as they become available.

In community,
The Endometriosis Coalition Team

(TY .is.lotus for the beautiful graphic)

04/07/2026

Slowly, but surely, change in the landscape of endometriosis care is coming. Let’s keep fighting. It’s becoming too hard to drown out our collective voices.

04/03/2026

Adenomyosis is defined as “the presence of endometrial glands and stroma within the myometrium.” The myometrium is the muscular portion of the uterine wall. In layman’s terms, it is when endometrial tissue grows into the wall of the uterus.

Some common symptoms of adenomyosis are: painful periods, heavy periods, bloating, generalized inflammation, hip pain, back pain, and pain when the uterine muscle is compressed such as during a pelvic exam or during s*x.

Adenomyosis can be diffuse: scattered throughout the uterus, or focal: affecting a limited area.

A diagnosis of adenomyosis can be suspected by a thorough physical exam by a doctor who is well versed in treating the disease. You may hear a specialist describe a uterus affected with adenomyosis as “boggy” or soft. Imaging may also show signs, such as an enlarged uterus.

However, the only definitive way to diagnose adenomyosis is through pathology after a hysterectomy has been performed. Hysterectomy is considered a definitive cure for adenomyosis.

Since endometriosis and adenomyosis can often co-exist, it’s important to investigate all possible sources of pelvic pain.

04/02/2026

Sharing some words from my heart for Adenomyosis Awareness Month. If you’ve dealt with the grief of hysterectomy, infertility, or miscarriage, I hope that these words make you feel seen and understood.
💙

04/01/2026

As many of you know, I’ve spent the last 10 months battling an autoimmune disease called Dermatomyositis. During this time I’ve balanced .co operations with intense immunotherapy treatments, all the while reminding myself that I’m just one person and I cannot do it all, no matter how hard I try to convince myself otherwise (relatable?)

If you’re new here, you’ll hear me talk about the Endometriosis /Immune Dysregulation relationship often because it has affected my life in such a profound way. It gives me even more motivation to fight for real answers and real treatments for all of us living with endometriosis.

The Endo Co is an All Volunteer Organization (AVO) 501(c)(3) meaning no one on the team gets paid for the advocacy work they do. They show up out of pure passion to see better lives for endometriosis patients. A lot of the advocacy/policy/ research initiatives work happens behind the scenes. If things seem quiet at times, know there is always someone fighting on your behalf .

Throughout the years, The Endo Co team has been like a family to me. I’m always sad to see a member leave to start a new path or transition in life, but always equally excited about adding new members with fresh ideas and different perspectives. With that being said, I am so thrilled to welcome two new members to The Endo Co team!

Please help me welcome Tiffany Coles as our new Associate Director and Christina Marie as our new Community Engagement Manager! Both of these women exemplify what it means to be a fiercely dedicated patient advocate, and I’m certain their unique skill sets will serve The Endo Co community so well!

As always, thank you for supporting our mission to raise awareness, promote reliable education, and increase research funding for endometriosis. We couldn’t do it without you!

With love and light,
Jenneh

03/30/2026

What an eventful Endometriosis Awareness month it has been! Even though I couldn’t participate at the level that I would’ve liked to due to recovering from intensive autoimmune disease treatments for Dermatomyositis —Yes, endometriosis does give us a 30 to 80% increased risk of developing an autoimmune disease and I will remind any one of this, any chance that I get— The passion I felt through the endometriosis community coming together this year definitely had an impact on me.

Endometriosis patients are more informed now than they have ever been before. And sadly, that’s out of necessity. There is still so much misinformation circulating about the disease. There is still not enough awareness and education amongst the general public and healthcare providers. There is still a significant lack of research in truly understanding endometriosis as more than a gynecological disease, but a chronic, systemic, highly inflammatory disease that wrecks havoc on the entire body.

Though many of us are very educated, very informed, and very ready to advocate for ourselves, there are thousands of endometriosis patients who are brand new to this world. When I founded The Endometriosis Coalition in 2017, one of my core missions surrounding our work was that we never forget about those people—the newly diagnosed who are just hearing the word “endometriosis” for the first time. And that is what we will continue to do through our work.

With that in mind, keep sharing, keep advocating, keep questioning, keep demanding more. I promise you, it matters.

✨Also, don’t forget that Below The Belt by Project Endo is available to stream on AppleTV, Amazon, YouTube TV, and Google Play! You can access the direct links through their website!

03/26/2026

Endometriosis has significant financial and socioeconomic health implications, yet it remains poorly understood, underdiagnosed, and undertreated.

To alleviate the economic burden on patients and society, it is essential to:

- Shorten the 7 to 10 year delay in diagnosis.
- Invest heavily in research funding.
- Continue to raise awareness and educate both the general public and healthcare professionals.

Addressing these areas is crucial for improving the lives of those affected by endometriosis.

03/20/2026

Many in the endo community wonder why in the last several decades not much has seemed to change in regard to endometriosis treatment and management. A big contributor is lack of funding and lack of research. In order for us to truly make progress in better understanding, diagnosing, and treating endometriosis, we must have adequate funding.

As you can see by this infographic, endometriosis funding is FAR behind diseases that affect the same number of women — Diabetes affects 12% while Endometriosis affects 10-11%

We don’t need another hormonal bandaid and surgery is not the only piece of the puzzle. We need more funding towards research that helps us understand who gets endo, and why. We need to look at genetic influences on the disease. We need to create better non-surgical diagnostic tools for faster diagnosis. We need to understand the many ways endometriosis systemically affects the entire body. We need treatment that is precise and helps guide individual treatment decisions.

This is what we are fighting for each day: clear answers that lead to better outcomes for endometriosis patients.

03/17/2026

I’m humbled by the fact that I have the honor of being a part of a documentary about endometriosis that will be streaming all around the world today in mainstream media (via Apple TV, Amazon Prime Video, Google Play and YouTube) makes me more emotional than I thought it would. Everything about this film is so deeply personal to what Joe and I went through for years, yet I know our story is not an uncommon or unfamiliar one, which is part of the bigger problem.

Thank you of for allowing us to be part of this incredibly special piece of art. And thank you for taking such care of our story, and allowing us to be completely vulnerable and trust you in the process.

1 in 10 women in the US. 190 million worldwide. 7 to 10 years to get a diagnosis. Suffering every single day without reprieve, mostly in silence. I promise you, you know someone with endometriosis, and I hope watching this film makes you compelled to want to take action to help create the change that is so desperately needed and so long overdue. Simply sharing about this film will let them know that you see them and that you’re willing to fight with them and for them.

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Philadelphia, PA

Website

http://www.theendo.co/links

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