Lack of diagnosis leads to years of pain
Imagine you have a giant drawing on your forehead that appeared one day. To clean it off, you’ve tried water, soap, alcohol wipes, and, hell, even tried scratching it off. When you ask a professional cleaner if they have any ideas on how to clean your forehead, they don’t give a straight answer.
“It’s not that bad, you’re being dramatic,” they say.
“We could try an acid cleaner, but I’m sure you don’t want to go through that hassle.”
“Have you tried taking a shower?”
The mark stays there for years and even begins to get bigger and spread to your eyes. You can’t see as well as you could two years ago. You have to wear special glasses and even miss important events because of your loss of sight. At this point, you have seen every type of cleaner you can think of. All you are told is repeating answers, giving you no help. You don’t file for disability or accommodations, as you believe you don’t deserve any without a diagnosis.
This is what it feels like to have an undiagnosed illness and to be ignored by your doctors.
I have lived with menstrual pain for a little under four years now, and it has gotten significantly worse this past year. This past year, my lower back, hips, and pelvis constantly feel tense and throb with pain at the slightest activity. My endurance is also low, and I experience nausea and fatigue from the smallest tasks. In high school, I spent a third of my time in the nurse’s office.
Men in my life would not believe I could be in that much pain. Sometimes I felt I was being dramatic because of their words.
My gynecologist began to wonder if I have endometriosis, as it is in my family history. To put it simply, endometriosis is when a female’s ovaries produce more estrogen than normal, causing lesions to form outside the uterus. It can cause immense pain, irregular periods and nausea. It is only diagnosable through exploratory surgery.
Since I was only 15 at the time, my doctor did not want to continue with exploratory surgery. I was put on a birth control that halted my periods but made me suicidal. I went off it three months after the prescription. My mother and I did not continue to explore endometriosis as the cause of my pain after my bad reaction to the medication.
Since September 2022, I have seen ten healthcare professionals. This includes a physical therapist, a dietitian, two chiropractors, an orthopedic surgeon, and three gynecologists. Five were women and the rest were men.
My first blood test was in November 2022. The doctor told us that my hemoglobin A1C levels were high, which meant I had low blood sugar. I saw a nutritionist to help with my diet. A few months later, I saw another doctor who saw my results and was confused. My levels were nowhere near high. The original doctor read my results wrong. I did not have low blood sugar, and I was once again left with nothing. The failures of my doctors continued to send me in a spiral.
The new doctor referred me to a physical therapist. I saw one throughout the summer of 2023, and she was fantastic, but nothing ever improved. I saw an OBGYN mid-July to get a STD test, just in case. She prescribed me birth control that was supposed to help with menstrual pain. It did not and actually made my periods worse. I was once again failed by my doctor, and a female one nonetheless.
I saw an orthopedic surgeon a few weeks before leaving for college. He referred me, once again, to a physical therapist. At this point, I didn’t see a reason to continue with something that didn’t work. Around this time, I began to lose faith in the American healthcare system.
It was not until my eighth new doctor that endometriosis resurfaced as a possibility. I went to see a chiropractor in November of 2023. She was puzzled at my symptoms and began asking questions. As she was listening to everything I’ve experienced over the past few years, she immediately jumped to endometriosis. She discovered that my tailbone was dislodged and explained that the lesions from endometriosis could pull on my skeletal structure, which could be the cause of some of my pain. I felt seen and heard with her — unlike my previous experiences.
I saw a gynecologist at the beginning of January. I am now on a newly FDA-approved endometriosis medication called Orilissa. The FDA only approves the use of the drug for a maximum of two years, as it can damage bone density. While I am lucky to even have an option besides surgery, this one feels like a slap to the face. Why is the only alternative to surgery right now a temporary medication that destroys my bone density? And, it’s expensive. If I didn’t have good health care, I would not be able to afford Orilissa. The new birth control I was put on costs almost $700 alone.
Countless other women with the same issues as me are forced to live in pain without any hope of even trying medication like Orilissa. It is a cruel punishment to live in the so-called “Land of the Free” and not be free with your own body.
The plan my doctor, mother and I agreed on was to take this new medication for two months. When I return for spring break in March, we will meet again to discuss options. If Orilissa doesn’t work, then we may take the surgical route with exploratory surgery to officially diagnose me. After exploratory surgery, we would discuss removing my uterus. I feel helpless that surgery was the only effective solution for endometriosis.
I used to joke about getting a hysterectomy once I turned 18 to stop my pain forever. I never knew I might need one. I always knew I wanted to adopt. I never knew it might be my only option.
It’s been a three-year long journey so far. There were so many times when I considered just giving up and not advocating for myself. I was left out of activities and couldn’t do what I loved. Coworkers hated me for my inability to work. I felt guilty for making my parents pay for countless doctor visits, tests, and X-rays. I still do. I still fear that I don’t have endometriosis and that I’ll have to start over again. I fear I will have to be ignored and misled by doctors for another three years.
Even if my result is earth-shattering, I can choose to have pride in fighting for myself and not giving up. I’m not quite there yet, but I hope to be.