May 2, 2018
If you spent much time on social media this past March, you may have seen a few black and white photos of women holding up signs reading “1 in 10” – or maybe you haven’t. While endometriosis affects 10% of all women – approximately 176 million women worldwide – very few people are talking about it. What does that mean? It means that those 1 in 10 women are often not receiving the care, respect, support, or treatment they need.
“One of the most critical challenges facing the endometriosis community is a lack of factual awareness; a challenge which keeps us largely mired in myths, misinformation, lengthy delays in diagnosis, poor treatments and an incredible lack of support. The legacy of misinformation enshrouding this illness is shared in perpetuity – from even well-meaning, well-respected providers to patients, from medical educators to next-generation healthcare professionals, from health publishers to the media, from organizations to ‘celebrity spokespersons‘, from mothers to daughters, from generation to generation. Unrelenting societal and cultural bias surrounding menstruation and pelvic pain also keeps the disease belittled, invalidated, ignored and diminished. If you are not already angry about the state of affairs in endometriosis, you should be.”
– Nancy Petersen (Read her full article about why awareness matters here) http://www.centerforendometriosiscare.com/endometriosis-awareness-why-it-matters/
What is endometriosis?
Endometriosis, or “Endo”, occurs when tissue similar to the endometrium, or inner lining of the uterus, is found growing outside of the uterus, where it doesn’t belong. Endo can be found on pelvic structures, the bowel, bladder, sciatic nerve, ligaments, and even the lungs or brain. The wayward tissue causes inflammation, scarring, adhesions, and cysts, contributing to the diverse array of pain and symptoms.
Endo is not cancer. It’s not life-threatening or terminal. And, perhaps the biggest barrier of all – it typically only affects women. But it does cause a tremendous amount of pain, sorrow, and difficulty, and it deserves to be understood and brought into the light so that these 1 in 10 can get the help they need.
I’ve been particularly lucky to avoid many of the pitfalls and obstacles that so many endo patients face in the course of the disease – I have an extremely supportive doctor, community, and husband. I have had access to the resources and treatments I need to adequately diagnose and treat my disease. But this is not the case for so many, and I want to add my voice to the fight for better care.
I’m one of the lucky ones, but I’m angry for my sisters across the world that are ignored, dismissed, misdiagnosed, and mistreated. So, while there are plenty of resources available if you look hard enough, I am adding to the list. So that maybe even one woman can learn and find the help she needs, or at the very least, know she is not alone.
I’ve looked through the various messages and questions I’ve received over the years and put together a three-part series to give some general information about the disease along with my own story. Before you can really find healing or improvement, it is crucial to understand the disease itself. This series will be broken down into Symptoms, Diagnosis, and Treatments – once we’ve gotten the big important stuff out of the way, I will share some of the tips and tricks I have for managing your endo day-to-day (ya know..the “fun” stuff).
I am naming this series a “crash course” because I am in no way attempting to include all the relevant information there is to know here. I am not a doctor, and I don’t claim to know everything. But I have spent years doing my own research and have found several helpful resources that I hope to pass along to other woman starting their journey towards answers and healing. For more information on any of these topics, please follow the links provided!
We will begin next week with an overview of endometriosis symptoms and what they were like for me! I encourage you to follow along. Even if you’re not an endo patient, you likely know someone who is – even if she doesn’t know it yet – and there is nothing more helpful than having a friend who supports you through learning and understanding.
Be well, Jenna
See all endo-posts here.
Want to talk endo? I love to hear and share stories with my fellow endo-sisters! Leave a comment or email me at firstname.lastname@example.org! You can also follow me on Instagram @jennahuckabysimmons.