What I Learned When My Body Went Rogue With Endometriosis

The first injection was by far the most difficult. Between meetings, the nurse at the clinic where I worked told me to lower my pants; take a deep breath. The long stabbing needle was seeping its burning contents into my flesh. I was strong though, not even a wince. To be honest, I’d been too numb to feel it at all.

This was purposeful, this was prescribed; and this would give me my life back. As I was redressing she said I shouldn’t be worried if I became nauseous, or if my headaches became migraines and if my sleep was interrupted by hot flashes. “Add-back therapy,” she said, “takes a while – make the right ‘cocktail’ with a smile.” I knew she was trying to make trying to make the experience tolerable for me. I usually manage to tolerate when I can justify it as the means to a better end. But there were so many of my questions that had been returned to me by professionals with: “We don’t know” and “No, it won’t cure you.” That this diagnosis, endometriosis, seemed intolerable. I was tolerating the deep thrashing waves of pain nearly daily already, the depression and anxiety of not being able to fulfill my partner at the time with the children I had promised and the ever-growing fear that all of this would make me unlovable.

I spent the rest of the day trying to sneak out of meetings quietly to run to the lady’s room. With sweat on my brow, my heart pumping what seemed like acid through my veins, making its way to my stomach. Heaving quietly, embarrassed at the idea of a coworker walking in. Standing dizzied, I cleaned myself up in the mirror, put on my “healthy face” by pinching my cheeks and smiling back at my reflection, hoping the worst was over — it was not. I spent the better part of a year taking the synthetic hormone injection, watching as my hair fell out in clumps and my body’s many other protests to this “therapy.” I headed back to my desk.

Apparently, sleep would now become a foreign concept that I envied and dreaded simultaneously. Trying not to wake my sleeping partner as I spent my nights changing my sopping shirts and splashing cold water on my face.

I went back monthly for another injection. As my symptoms worsened, they evolved into my new normal – and as my body withered, my mind remained in a constant state of apprehension and fear. I quickly became depressed not only from the physical side effects (I averaged three hours of non-continuous sleep for nearly 10 months), but the psychological and emotional toll they had taken on me and my enjoyment of life. I could no longer be the reliable person I’d once been, could no longer see the world through painless eyes.

The more I researched, the more I was convinced that I had made the wrong choice. Was it really a choice? I don’t recall another option being presented to me. I tried over the months to contact the prescribing doctor. She was busy apparently. In a year, I managed to see her twice, then nothing — she’d gone on leave with no one replacing her. Anger was my first reaction, then panic: “But we had a plan.” For once I’d put my trust in her I’d felt safer. I needed someone to take charge. I followed the directions, and I should see results.

I look back now and feel naïve and somewhat entitled when analyzing these thoughts. No one ever guaranteed that this life would be painless. I’d felt pain before, but nothing like this one. This pain in my womb permeating to fill my entire body until it spilled out to poison my passions, activities and social interactions. This pain that seemed to swell first my belly and then my heart — this pain that made me uncertain of the broken human being I saw staring back at me in the mirror. I truly felt that it would swallow me whole if I let my guard down. I became angry, then anxious, then sad. This cycle would repeat itself until I found my voice through writing and sharing my experience.

I took control of my diagnosis, I made adjustments that no one in their 20s wants to make. Most importantly, I learned to say no. No to prescriptions I felt unwarranted for my body, no to making this journey only about fertility and not about my physical and mental health. The doctors seemed to know so much about fertility and so little about the pain, everything became a question of whether or not I wanted children in the future. I’d never really asked myself the question because I figured that as a woman I would and could have them if and when I wanted them. After a lot of research and a full-time job of being my own advocate, I found a doctor who actually said, “If you don’t want hormones, we won’t do hormones. After all, it’s your body.”

I realized I had disconnected from my body because it had let me down. It had gone rogue and I had no interest in participating in its mayhem. I didn’t have a choice however, I couldn’t take it off at night and hang it in the closet like I’d visualized so many times whilst being angry at it for causing such a mess. It wasn’t until I accepted that there would be pain, physical and emotional that I truly came to a place of rest with my diagnosis. I started listening to the pain – not fighting it, but trying to recalibrate my emotions towards it; embarrassment, impotence and isolation to name a few. Though this didn’t make it disappear, it permitted me to use the fighting energy it had freed up to focus on a new plan, a new course of action. It empowered me and finally gave me the room to breathe fully without the fear of it controlling me.

Getty Image by Marina Zaam