Today we’d like to introduce you to Endometriosis Foundation of Houston .
Hi Endometriosis Foundation of Houston, it’s an honor to have you on the platform. Thanks for taking the time to share your story with us – to start maybe you can share some of your backstory with our readers?
The Endometriosis Foundation of Houston (EFHou) is a non-profit founded by and for people suffering from endometriosis. Several of our board members first met at a screening of the documentary Endo What? in 2017 and took comfort in finally connecting with people who understood our lived experiences with endometriosis. The reality is that endo is a very lonely disease. It is a poorly understood condition with a wide variety of symptoms and some very bad “treatments”. Even though so many of us have a different experience of the disease itself, we shared a common thread of suffering for years without a diagnosis, not being believed by doctors, having our pain dismissed, feeling like–and being treated like–we are “crazy”, and going through one failed treatment after another.
We created the Houston Area Endometriosis Group on Facebook as a means of staying in touch. As the group grew, and we met more and more people going through the turmoil of endometriosis, so did our desire to create change. We had to learn to navigate endometriosis the hard way; we decided to create the Endometriosis Foundation of Houston so that those who come after us don’t have to. We turned our pain into purpose and established the first and only Houston-based endometriosis nonprofit in 2018.
Since then, we’ve continued to grow our online support community, offer in-person and online educational events, plan meet-ups, spread awareness, work on legislation, and created a scholarship program to help patients access care.
Alright, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
Endometriosis is plagued by systemic challenges. There aren’t enough skilled surgeons able to provide effective care. Medical schools don’t teach up to date information. There’s no insurance procedure code for excision surgery, aka the gold standard of treatment. There’s a lot of sexism around a disease that is seen as a “woman’s problem”. Most people don’t even know what endometriosis is–that it isn’t just a bad period. Actually, it has very little to do with menstruation at all. We are a small group of women going up against a big, multifaceted problem.
EFHou is 100% volunteer-run. It is heavy work, and we are managing our own illnesses, so that’s an additional challenge. Making sure we give ourselves adequate self-care and don’t burn out has been difficult at times. We’re passionate about what we do, and there aren’t a lot of other people taking on this burden, so it can be hard. Buy-in and adequate funding have been challenges as well.
As you know, we’re big fans of you and your work. For our readers who might not be as familiar what can you tell them about what you do?
Our primary tasks are to educate people about endometriosis, build awareness, and help others find quality care. Endometriosis is a chronic condition in which tissue similar to the lining of the uterus is found elsewhere in the body causing pain, inflammation and organ dysfunction. It is important to note that endometriosis is not a uterine disease, a reproductive disease, or a menstrual disease. It is a systemic disease that can affect every organ in the body whether you have a uterus or not. There are so many misconceptions about endo and our goal as a foundation is to help people better understand the realities of the condition and to access effective care. We want to empower people suffering from endo to be informed decision makers in their health care journey.
We do this through educational and awareness campaigns and by building relationships with health professionals who are providing quality care to endo patients, such as expert excision surgeons, pelvic floor physical therapists, and other allied health care workers. This allows us to host free, multidisciplinary educational talks with a range of experts.
In 2022, we launched the Healing Hou: Pelvic Floor Physical Therapy Scholarship Program. We were able to award 10 sessions of PT each to two scholarship recipients. Thanks to record fundraising and donations, we are able to grow this program in 2023.
We are excited to return to in-person events for the first time since 2020! So far this year, we’ve hosted social meet-ups and a documentary screening of Below the Belt in partnership with Baylor College of Medicine, with more opportunities to meet local Endo Warriors to come! We are also currently supporting efforts to pass House Bill 1298, which Austin-based attorney Olivia Lee filed with Representative Harold Dutton, Jr. This bill would require schools to make information about endometriosis available to students, which would be a huge step forward in our mission to bring awareness to the disease. It would also hopefully cut down on the 7-10 year average delay in diagnosis. You can read more about the bill at www.txhb1298.com
Are there any books, apps, podcasts or blogs that help you do your best?
Books: Living with Endometriosis by Samantha Bowick; Beating Endo by Drs Iris Orbuch and Amy Stein;
Outsmart Endometriosis by Dr Jessica Drummond
Documentaries: Endo What?;
Below the Belt
Organizations: Endo What;
The Endometriosis Summit;
The Center for Endometriosis Care
Facebook groups: Nancy’s Nook Endometriosis Education https://www.facebook.com/groups/NancysNookEndoEd/
Houston Area Endometriosis Group https://www.facebook.com/groups/houstonendo
Contact Info:
- Website: www.efhou.org
- Instagram: @EFHou
- Facebook: www.facebook.com/EFHou
- Twitter: @EF_Hou
- Youtube: https://youtube.com/@endometriosisfoundationofh6466
- Other: https://facebook.com/groups/houstonendo/
Image Credits
Endometriosis Foundation of Houston
