At 23, I began to experience debilitating pelvic pain following a burst ovarian cyst. I had already been diagnosed with endometriosis and adenomyosis, but this was a significant escalation of my symptoms, leaving me barely able to get out of bed. I had just graduated from college and started my first full-time job as a teacher, an occupation which quickly became impossible for me as my health declined. Chronic fatigue accompanied pain, and as I went to see more and more doctors, it was determined that I have nerve damage in my pelvis on top of the endometriosis. Imaging showed wear and deterioration to my low spine, hips, and pelvis atypical of my age. I began using a cane to walk. Doctors suspected something else was fueling the development of my nerve condition, the accumulation of scar tissue in my abdomen, and my deteriorating joints. At the beginning of 2025, I was referred to a specialist in connective tissue disorders. After reviewing my symptoms, images, and health history, the specialist was shocked no one had seen it sooner.
Looking back at a childhood of dozens of joint dislocations and significant issues with proprioception and energy, I assumed I was just a clumsy kid slowly growing into my body. It turns out, I was born with hypermobile Ehlers-Danlos syndrome (hEDS). Learning this information allowed me to start seeking specialized PT and Pelvic Floor care, and I began to improve. I also had a neurostimulator placed for the nerve condition in my pelvis, which has significantly helped my chronic pain. Unfortunately, in July, I lost the ability to stand and walk, accompanied by severe pain in my legs, pelvis, and lower back. I also developed an atonic neurogenic bladder and now have to self-catheterize. After weeks in the hospital, months of PT/OT and specialist evaluation and testing, doctors cracked the case. I have just recently been diagnosed with Tethered Cord Syndrome (TCS) and symptomatic Atlanto-Axial Instability (AAI), both of which will require spinal surgery. I am awaiting a detethering and laminectomy next month and a cervical spinal fusion at C1-2 the following month.
I am now almost 26. Living with hEDS, TCS, AAI, and my other conditions has shaped my young adulthood. While it has been taxing, expensive, and painful, it has made me prioritize joy and justice in my life above all else. It has made me less anxious about the little things. I have the privilege of working in restorative justice, where I am able to use my experiences to connect with people in difficult circumstances, and I have been able to do mutual aid work to support others impacted my complex pelvic pain conditions and other disabilities. I am also a freelance writer and have had the opportunity to write, publish, and perform plays and poetry about my experience, hopefully shedding a broader light on how gender and disability can intersect and raising awareness about systems that hurt us and resources available to help us. I spend a lot of time resting and planning, curled up with my cats and a heating pad, dreaming of ways to do and feel better.
