Endometriosis Awareness Month

A year and a half after my laparoscopy & excision surgery, I'm enjoying a life with minimal endometriosis symptoms. I am dreading the idea that they will come back.

For endometriosis awareness month, I thought I'd share something that made me aware of my endo again and reflect on its impact on my life.

I was recently having a conversation that prompted the (strange?) question, what was the worst pain I'd ever been in?

We were talking about athletic injuries, broken bones, and surgeries, all of which I've experienced. I reflected on the moment an athletic trainer tried to "pop my dislocated shoulder back in" when I really had a broken collarbone. Or when I woke up from anesthesia with too much air stuck in my leg after my hip arthroscopy. Those were precise moments of extreme, vomit inducing pain that I will never forget. But I don't fear that pain--sure, I fear injury and its consequences, but I know that pain and I've gotten through it. But the chronic pain that can send me out of my body, manipulate the way that I see myself and bring me to the emergency room, which can strike at random, persist for days and with seemingly no end in sight--I fear that pain down to my core. I absolutely dread the pain that took over my life.

The trip to the Lake in 2021

While I didn't share this in that conversation, when I think of the worst pain I've felt in my life, I think of one night that actually started out great. My sister and I took a spontaneous trip to our family's lake house for a few nights before I headed off to the UK for my Master's. We were packing up to head back home when the deep, tugging pain and intense bloating started kicking in. I started to drive away, but within the first ten minutes, I could no longer speak--the throbbing pain was amplified by sharp agonizing bursts and I was dizzy and nauseous. I pulled over the car and my sister started driving. I could barely walk as I switched to the passenger side and my vision was blurred. Instead of heading home that night, we ended up at a hospital along the way.

The entire time I was in the emergency department, I was in a haze, sweating, nauseous and struggling to describe my symptoms through the pain. They put me on a morphine drip and eventually did an ultrasound and an incredibly rough pelvic exam. "Your cervix is friable and I see evidence of burst ovarian cysts," the doctor said. "Otherwise, I don't see anything wrong."

They continued the morphine drip and prescribed Vicodin, and sent me on my way.

Aside from the excruciating pain (once I was off the drip), I felt like a hollowed out shell, ashamed and disgusted by my body and hopeless because I left without really any care or solutions. I was so nauseous and an intense depression was bearing down. This wasn't the first time I'd felt this kind of pain, but it was the first time that I sought a doctor's help for it in the actual moment that it struck. What made this experience so painful was the reality that, even in that state, it seemed like there was nothing they could do and worse, that they didn't believe that anything was wrong.

Luckily, we had family nearby and had a place to stay for the night, as our parents' house (where we'd planned to be that night) was still 2 + hours away. I woke up with that same drowsy depression and nausea, embarrassment and shame haunting my steps as I forced a smile to thank the people who'd let us stay the night. I was asked what had happened, and I couldn't answer. What could I say? I went to the hospital with excruciating pain, and they sent me home and diagnosed nothing? Would they think I was being melodramatic, psyching myself up and manifesting a problem for attention? I didn't have the energy to explain myself, and wondered if it was psychosomatic after all.

My sister drove us both home, and I am so grateful that she was there for me during this. If I was alone and this had happened, I don't know what I would have done. My sister and my family were so supportive during this, but I still felt isolated, and concerned that they also suspected my condition was somewhat psychologically driven.

That summer and my subsequent year in the UK were amazing, with moments that will always grace the highlight reels of my life. But that time was also marred with the constants of pain and fear of pain that made it difficult to leave my house and disconnected me from my body. The entire time I was trying to coordinate care, both in the UK and when I was back visiting my parents in the States, and that process ate away at my energy as well. When I spoke to my friends or family and they asked how I was, my answer almost always had to do with my endometriosis symptoms, whether they were bad or good or how exhausted I was. My partner was there picking up the pieces day in and day out, trying his best to support me. The pain was just a constant in my life.

So if someone asks again, I don't think I'll be able to go into the context enough to share that the most pain I've ever been in was the moment they discharged me from the hospital that night. The combination of the pain, dullness of the morphine, overwhelming embarrassment, shame, and the panic that even a doctor couldn't make it go away, outmatches my broken bones and surgeries. The most depressing thing about chronic pain is the moment of realization and accompanying dread that this could just be how life is now.

Luckily, a few years later, that is NOT the case. I may need excision surgery again in the future if these symptoms come back, but at least for right now, I do have my life back. If you are feeling similarly, there is hope for you too.

I think a central objective of Endometriosis Awareness Month is to help people that are suffering to not feel as isolated or hopeless as I did in those moments. It's also to help encourage the medical community to rethink the way they approach reproductive health issues and female patients, as well as push for further research on the condition. It's kind of ridiculous that people have stood on the moon, while a condition affecting roughly 10% of women is only diagnosable through a widely inaccessible surgical procedure. Anyway toodaloo!