How Endometriosis Taught Me to Stand Up for My Needs
For most of my life, I wasn’t exactly what you’d call “assertive” about my medical care. In fact, I’d say I was downright passive about it.
As a patient, I’d let my healthcare professionals lead our conversations. I’d accept their conclusions on what was happening with my body and try their proposed solutions for whatever problem I was dealing with. After all, they were the experts, right? I’d never been to medical school, so I couldn’t imagine that I even knew the first thing about my body’s needs.
Who’s really the “expert” on my body?
The first time I heard the word “endometriosis,” I wasn’t in a doctor’s office. I was at home in bed, in pain, reading stories from women who were being ignored by doctors.1
Many of these stories sounded familiar. Stories of pain that began with bad periods and went on for days, and weeks, and months on end.
Even as I began to suspect that I was experiencing symptoms of endometriosis, I trusted that medical experts would tell me exactly what was going on. I told several different doctors what I was feeling, including terrible cramps with pain radiating throughout my body, not just during my period, but all month long.
Doctor after doctor either didn’t believe me or didn’t seem alarmed by my symptoms at all. Most suggested trying a new form of birth control. A couple of them even treated me like I was a drug addict trying to get some medication that I didn’t really need. One doctor agreed that it sounded like I had endometriosis, but she said there wasn’t much to be done about it – except to try yet another form of birth control.
It didn't make any sense
At this point, I was confused. I was going to the “experts,” but after doing my own research, it seemed that I knew more about endometriosis and its treatment than they did. The pain was ruining my life, hitting me every day and taking away my ability to function in day-to-day life, and yet, nobody was responding to it with any urgency.
Eventually, I found the expertise I needed in an unlikely source: Online support groups.
For the most part, the people there weren’t healthcare professionals. They were patients, just like me. From their research and experience, they compiled resources for those of us who were lost in the fight for diagnosis and treatment. I wasn’t the only one facing doctors who were unwilling or unable to address my pain.
I'm my own best advocate
I learned exactly what I needed: A surgeon who specializes in endometriosis and a diagnostic laparoscopy to officially diagnosis me with endo and start me off on a treatment plan.
After all of my struggles, it turned out that the expert I needed to advocate for myself was me. I found a list of endo specialists, drove to one a couple of hours away from my home, and told him what I was looking for.
And guess what? He listened to me. He let me vent about the pain, agreed that endometriosis was a possibility, and made plans for diagnostic surgery and treatment.
Finally, after surgery a few months later, I had an official diagnosis. And while the surgery wasn’t a cure, it gave me confirmation that my symptoms weren’t all in my head, in spite of the inaction of previous doctors.
At the start of this journey, I sure didn’t expect to meet with doctors who wouldn’t help me. But my biggest surprise was realizing I know my own body best, even without a medical degree.
Now don’t get me wrong – I know that there’s still plenty I don’t know, and that following the advice of healthcare professionals is the responsible thing to do. But endometriosis and chronic pain is still widely misunderstood and too often dismissed, even among many healthcare professionals.2
This is my body, after all – and I’m the best person for the job.
Have you ever experienced a "weird" symptom and wondered if it was endo related?