Endometriosis: A Personal Journey with an Epidemiologist
When I asked Kelly to write for the blog, I knew some of her story through social media and a few pole classes we’ve taken together. Her full story has me absolutely ROCKED and it opened my eyes to some of the other injustices of the healthcare system in the US. On her PhD journey, she shares with us how closely tied her research is to her personal mission. She’s such an inspiration!
“My latest doctor was not kidding when she called it a textbook case. Why did it take nearly 15 years?”
Periods are never fun for anyone, but by the time I was 19 mine had gone from an uncomfortable few days of cramping, crying, and bloating to a feared event. I developed searing back spasms, nausea, and GI changes every month until it was happening nearly every week, all while I was a fulltime undergrad working three jobs.
The problems were embarrassing, and I felt uncomfortable bringing them up to my doctor. My symptoms got worse and I lived in fear of doing anything that may trigger an episode. When I finally decided I would ask for help, I got a shrug and “PT” written across a prescription pad from my gynecologist. I felt I had overblown my symptoms. No one seemed interested in explaining what was happening or how PT would help, so I never went. Unfortunately, this would be one of my better interactions with our healthcare system.
I worked up the courage to talk to my mom after toughing it out for a few years. She told me she had endometriosis and suggested I may have it as well. Endometriosis is a condition where the cells that line your uterus grow outside the uterus and cause painful scaring and lesions in other parts of your body. It is estimated to affect around 10% of people with uteruses. The name felt like the key I had been missing. Had I described my symptoms poorly when I spoke with my doctor?
I went to my next doctor’s appointment, dropped my magic word, and they sent me for an ultrasound. Great, they’ll put some weird cold jelly on my abdomen and the screen will light up with all things that are wrong with me and I’ll get a pill or surgery date or whatever. I’ll be fixed. I show up my ultrasound and it is most definitely not the jelly-on-the-belly type. It’s a transvaginal ultrasound and it is exactly as much fun as the name implies. The ultrasound tech and I ended up in an argument after she informed me that a collection of light and squiggles is “where your babies will be one day” and I quickly told her that I was not interest in children. After knowing me for all of twenty minutes this woman argued that I will DEFINITELY change my mind. Imagine getting a lecture on your personal life, from a stranger, with a plastic rod hanging out of you while you’re not wearing pants. 0/10 do not recommend.
To add insult to injury - after being lectured on my least favorite subject, my dreams of a diagnosis were dashed. I received a voicemail from a nurse several days later saying “looks normal” and zero follow up. I was about to turn 26, lose my health insurance, and start grad school for my Master’s in Public Health – I exhaled and braced myself to tough it out, again.
I spent another two years struggling through pain on a daily basis. My student health insurance was designed for healthy 19-year-olds getting STI screens and flu shots, not someone with a mystery illness. I graduated and started a high-pressure job and the stress made my symptoms worse. If I wasn’t crying from work, I was wrapped up on my bathroom floor in the middle of a back spasm. I was always worried when the next episode would be and I ultimately quit that job to protect my mental and physical health.
I started working at a large university researching pregnancy and mental health. I had a great boss, but my symptoms made some days unbearable. I made yet another doctor’s appointment and decided I would advocate for myself. I am an epidemiologist with a master’s degree, surely I can make this doctor understand. Yet again my hopes were crushed. I got a shrug and a suggestion that I should try therapy. She didn’t even note any symptoms in my medical record. I decided I would start taking my birth control pills continuously until someone told me I had to have a period. Desperate, I took a gamble, If I could safely take these pills three months in a row, why can’t I go longer?
I asked my boss for help because she is well-connected to women’s health professionals. She suggested a pelvic pain clinic within the hospital. I find out that it is a $6k membership fee, plus all sessions were out of pocket. They don’t take insurance. I did not go.
I waited another year and went back to the same doctor and I made it clear I wasn’t leaving until she did something. She gave me a prescription for something called pelvic floor physical therapy. There was a six month wait for an appointment. I only made it to two appointments before I started a new job.
I found a new, equally dismissive, doctor but was able to resume pelvic floor PT under my new insurance. It helped a little, but my symptoms were still awful most of the time. Every interaction with a doctor’s office made me anxious. I would often cry in the time leading up to the appointment and cry after when they inevitably dismissed my symptoms.
I found yet another new doctor and she turned out to be the worst yet. I went into my appointment and tried to outline my medical history, only to be interrupted by the obviously annoyed doctor. I said I wanted help and she threw up her hands and said, “I’m not a back doctor!” I am still unsure what she meant by “back doctor.” I tried to explain that these back spasms are linked to my period cramps and seem to be related to my reproductive system and THAT’S kind of your thing as a gynecologist. Her unhelpful suggestion: Motrin (after 10+ years I OBVIOUSLY hadn’t thought to grab some over-the-counter painkillers). She then told me to undress and left the room. She then performed a rough pelvic exam on a crying patient. I left, humiliated.
I called the patient complaint line every week for six weeks with no response. I finally asked for the supervisor my complaint had been forwarded to and tracked down her number. She answered casually that she had “meant to call me,” like I was an acquaintance she meant to get coffee with and not an irate patient who had been harmed by her doctors. She shrugged me off but I eventually negotiated seeing another doctor in the office, one the physical therapist recommended, without a co-pay. Let me tell you, getting them to eat $30 involved more work than it should have considering their doctor assaulted me.
The next doctor was great - even if it meant I now had panic attacks sitting in the waiting room from my last experience. My anxiety had been getting steadily worse, but the panic attacks were new after my last visit. At least this doctor wanted to discuss surgery to finally diagnose me! She gave me medication to help.
Just when hope was on the horizon, Covid-19 hit and my surgery was cancelled. I decided to switch doctors because I couldn’t deal with experiencing another panic attack in that office. I wrote up a detailed medical history and sent it over before my telehealth appointment. Finally this doctor said she didn’t need surgery to diagnose me because I had “textbook” endometriosis. Technically, it was a victory, but it felt hollow after all this time.
During all of this I had also began my PhD in Epidemiology. I have focused my dissertation on endometriosis and the way people who are affected cope with their symptoms when they can’t get help. I learned that on average people wait 8-10 years to be diagnosed. Delays come from a variety of sources: embarrassment at the symptoms that can affect the sex life, how often society normalizes pain, and of course, the dismissal of symptoms by doctors. I was horrified to read that all of my symptoms show up in nearly every single research study. Even my strangest ones. My latest doctor was not kidding when she called it a textbook case. Why did it take nearly 15 years? My story is not unique in any single way except that I was exceptionally privileged to have the money, education, and capacity to pursue a diagnosis.
Another disturbing observation shows a lot of studies attempting to link depression and anxiety with endometriosis. Authors seem to suggest that depression and anxiety make you more likely to have endometriosis - not that the delay in diagnosis, combined with the dismissal by doctor after doctor, can cause or exacerbate anxiety and depression. I cried reading it. I felt for every participant in these research studies. Not a single one was a number or data point to me. These were my people. I knew I found the subject I had been looking for.
-Kelly
Kelly O’Shea
Kelly is a guest writer for The Limit DNE. She has her masters in public health in the epidemiology division and is currently pursuing a PhD as of September 2020. We sincerely thank Kelly for sharing her personal story on our platform.
