Step Therapy Forced Me Off My Life Path
State: Washington DC
Congressional District: DC01
Chronic Pain, Neurological Disease, Reproductive Disease, Urological Disease
Issues and Challenges
Rose has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Rare / Underserved Disease, Disability, Gaslighting, Invisible Illness, Job Insecurity / Loss, Prior Authorization, Step-Therapy / Fail First, Underserved Community
At the start of 2023, I was halfway through my first year as a sixth-grade English teacher. Just a few months had passed since I graduated from Georgetown University, and I was looking forward to continuing my growth as an educator and to begin applying to graduate schools.
I studied international politics and theology in college, and I planned to eventually go into humanitarian assistance work. My life was stressful but beautiful and full of hope, when one day I developed severe abdominal pain on my lunch break at school.
I was diagnosed with endometriosis at 16, and I have always had painful and heavy periods, somewhat moderated by birth control, but, coupled with a UTI-like burning sensation and tightness in my abdomen I hadn't felt before, I knew this was different and I needed to go to a doctor. First, I went to urgent care to get UTI/STI tested, but they immediately sent me to the ER because of the amount of inflammation and tautness around my stomach. I waited for 7 hours in intense pain until I was finally seen. I had two ruptured ovarian cysts on one ovary and one hemorrhagic cyst on the other. I tested negative for any infections. They gave me morphine and eventually sent me home, with a recommendation to see an endometriosis specialist. This is where it all began and ended.
I went to the gynecologist they recommended. She put me on a new birth control pill and recommended endometriosis surgery–a D&C, a laparoscopic fulguration of endometriosis, and a hysteroscopy. Unfortunately, her office was chaotic and her manner was apathetic, and there was scheduling error after scheduling error with my procedures. Finally, after 2 months of stringing me along while I was in intense pain, the doctor performed the surgery. After, I was told there was only (her word) mild endometriosis around my uterus and a large amount of scar tissue in it, which my doctor never could explain. She also said that the main source of my pain and discomfort was pelvic congestion syndrome. She handed me a box of tissues and told me that it appeared to be severe and that if the birth control wasn’t treating it, she would recommend a complete hysterectomy to take away the pain. She said for now, I would just need to take the pills and eventually, maybe I would feel better.
I never really recovered from the surgery. For two months, I suffered. I developed severe hormonally mediated vestibulodynia and vaginismus. Every time I relieved myself, I was in pain. I was nauseous and cramping every day. I could barely get out of bed. I had to go to the ER twice for severe pain and bleeding. I had to take medical leave from my job, leaving behind my students and coworkers, whom I loved. I felt tiny. I felt crushed.
Thankfully, with the help of family and friends, I was able to find a second opinion, which changed my outlook significantly. I went to another gynecologist with a background in endometriosis and other complex pelvic pain disorders and much more drive to try to treat me with kindness and to get to the bottom of my illness. She disagreed that pelvic congestion syndrome was causing all of my symptoms, and predicted I had adenomyosis inside my uterus along with a complex case of endometriosis that caused a hormonal and inflammatory response throughout my abdomen, causing the appearance of veinous congestion and the domino effect of the urinary discomfort, hemorrhagic cysts, and the pelvic floor dysfunction. It seemed that both the previous surgery and the birth control I had been on for so long exacerbated the inflammation. Sure enough, testing revealed my hormone levels were completely out of whack and my uterus was still just as inflamed as it was before the surgery and birth control, plus now my nerves were reacting to the level of pain and inflammation within my pelvis and abdominal walls. I was diagnosed with pudendal neuralgia by a pain specialist, who joined my care team to help manage chronic pain without opiates as much as possible. He prescribed me a muscle relaxer and also approved my use of marijuana for pain management. He delivered two pudendal nerve blocks, which helped relieve the pelvic pain, but it was discovered that my piriformis muscle kept spasming during the procedures, causing a pinching of the sciatic nerve. My legs would scream with pain and then go numb for several days when the medication was delivered, which is obviously not an ideal response. Often, throughout this process, it really felt like the universe was fucking with me.
I have been seeing a pelvic floor therapist for several months to build my pelvic floor strength and also the ability to relax it when it contracts as a response to the inflammation. Unfortunately, our progress is somewhat hindered by my vaginismus and vestibulodynia, which I have to take hormonal medication to resolve. Still, pelvic floor therapy definitely has made a difference in my ability to respond to pain within my body and to take positions and breaths to control it.
The care team put me on an endometriosis medication which, simply put, sends the ovaries into a temporary state of menopause to stop the cycle of menstruation/ovulation. While it has been working, it took my insurance two months to approve it. The out-of-pocket cost per month would have been nearly $4,000, and the insurance company wanted me to try “more methods of management” before approval, which my doctor appealed, as I had already been through nearly every method of endometriosis treatment except more surgery. Finally it was approved, and it has started to improve my symptoms by stopping my period, but unfortunately, not entirely. Two months later, it was recommended that I meet with a Minimally Invasive Gynecological Surgeon (MIGS). After a cystoscope, an MRI, and an ultrasound, and a CT, she scheduled me for a robot-assisted endometriosis surgery and exploratory abdominal laparoscopy in December. I have 3 weeks to go until then. The care team also decided that my best chance at treating what has become chronic nerve pain was through Dorsal Root Ganglion Therapy (DRGT). Usually prescribed for Complex Regional Pain Syndrome Types I & II, DRGT is a neurostimulator at the base of the spine that will help control my pudendal neuralgia and increasing nerve pain in my buttocks and thighs. My insurance hasn’t yet approved the implant, but we are hoping to start the process of that treatment early next year.
So far, I have been diagnosed with endometriosis, adenomyosis, pudendal neuralgia, interstitial cystitis, piriformis syndrome, hormonally-mediated vestibulodynia, and pelvic congestion syndrome, as well as an undetermined form of nervous disorder similar to CRPS. It is often so hard to treat yourself with grace and love when dealing with chronic pain and invisible disability. I had to leave my job, change my plans for the future, and spend my savings to take care of myself. I had to question my future family plans. I had to change my daily routine, my means of transportation, my social life. I had to try and fail different treatments and medications over and over until I got on the right path. Jesus Christ, sometimes it is so hard.
But I have been so held in community. I’ve learned how to accept help, I’ve learned how to let myself rest, I’ve accepted the good days and the bad, I’ve connected with other people with similar conditions and learned from their wisdom. It is very possible to find happiness while in pain. It isn’t always happy, but it really often is.
Right now, I am pushing to express myself, find support and community, and continue to heal within these painful times and while waiting on my next surgical steps. I am focused on my creative energies, which make me feel alive. I write every day, and I am in the process of writing and producing a play about my experience with chronic and reproductive illness. I run a small business, through which I sell vintage and upcycled clothing and art online and regularly organize events in my home or in accessible spaces. I know that one day, I will be able to go to graduate school and somehow fulfill my goal of helping others. I have a girlfriend, a cat, a lovely sibling and parents, and friends I couldn’t have done it all without. The process is far from over, but now I am certain that there is always a way through. Below is a piece I wrote about pain and transforming the way we imagine disability.
My Motivation and Inspiration
See above final paragraphs 🙂