I’m Kate and my Endometriosis journey started at a young age; I began having bowel symptoms at seven years old. I vividly remember spending time in the nurse’s office, only able to say my stomach hurts.
My period started just a couple of years later, which is when my symptoms became more severe in addition to excruciating periods. I started experiencing joint pain and fatigue to the point of doctors thinking it must be mononucleosis, but the fatigue never subsided. My heart would begin racing at the simplest task; taking a shower was exhausting. I was on countless supplements as my parents began searching beyond traditional western medicine. I became unable to participate in my physical education classes, and by high school, I was routinely tested for various disorders with a particular focus on autoimmune diseases. I spent each period in the nurse's office with a heating pad, sometimes the entire school day. It would take until I was 25 to get a diagnosis. It was another four years before having surgery with Dr. Sinervo at the Center for Endometriosis Care in Atlanta, GA, for expert excision of Endometriosis and a hysterectomy for Adenomyosis.
About a year after my surgery, I began pelvic floor physical therapy, a routine part of post-op care for individuals with Endometriosis, and I shared bits of my journey each visit. My physical therapist encouraged me to begin a blog, not necessarily for anyone but myself to read, but as a way to journal and document what it was like and the journey forward. I asked Laura if she would like to start the blog with me, and in December of 2018, we formed Endo Girls Blog.
Since then, we have continued to expand our outreach on various social media platforms and in our personal lives, further igniting my passion for helping others. I became a board-certified patient advocate in July 2020 and a member of The National Association of Healthcare Advocacy (NAHAC) and The Alliance of Professional Health Advocates (APHA). Continuing education is required to maintain certification, and I am incredibly grateful for each course I take; healthcare and patient advocacy are multifaceted and ever-changing, requiring a constant dedication to forever learning. My vision of patient advocacy has drastically transformed over the past year. I used to think it was simply informing and empowering, but now I realize it requires a vast understanding of ethics, the healthcare and insurance systems, government regulations, private sector policy, and numerous other entities.
I see that advocacy isn’t just telling my story and encouraging others to follow my path; it's empowering patients to create their path. Advocates walk alongside patients, present the necessary information, and ensure there is always informed consent from the patient. Advocates do not tell the patient which direction to go, which medication to take, or which doctor to see. We help them find more than one direction to take, we help them find all of the information we can about the medications they are prescribed, and we help them find the doctors and second opinions that are helpful to their case.
In a way, I started this journey in a state of blissful ignorance, incredibly excited to finally make good use of my pain. I needed that drive to get me started, but as the dust has settled and the reality of advocacy has set in, I am now in a more comfortable and confident place; I am finally content and able to help guide those in need. I am forever indebted to those who have been my mentors – most notably everyone at the Center for Endometriosis Care in Atlanta, GA.
Our official mission statement: our mission is to dismantle dysfunctional perceptions of Endometriosis for all Endometriosis patients by providing facts, truths, and access to competent medical care, exposing incompetencies amongst OBGYNs and the medical community as a whole, and revealing pharmaceutical manipulation and exploitation of Endometriosis patients.
Laura and I can be found at endogirlsblog.com and the following:
Facebook: Endo Girls Blog
Instagram: @endogirlsblog
Twitter: blog_endo
Resources we love:
Centerforendo.com
Endocenter.org
Endopaedia.com
Endowhat.com