Endometriosis Took the Wheel, I’m Just Holding On

Endometriosis has changed my life. I used to be the person who would do anything. I always wanted to try new activities. I loved skateboarding and hiking just as much as I loved staying inside to read or game. But now, doing anything besides lying in bed and watching TV feels like too much, and even that can be hard some days.

The beginning of the pain

Since my very first period, it felt like I was being gutted. My mom gave me “the talk” and some books about what to expect, but no one talks about how bad the pain can really be, not even the girls at school. Six months later, the pain was so unbearable that I ended up in the ER.

The collapse

I remember that wave of pain like it was yesterday. It wasn’t even the worst episode I’ve had, but it was when I knew something was really wrong. I woke up in pain, thinking maybe my period wasn’t actually over, but it wasn’t that. On my way back from the bathroom, I didn’t even make it to my bed before collapsing. I had to crawl to reach my phone and call my dad. I couldn’t speak or scream. I was crying so hard. My parents rushed me to the ER, where doctors told them I was probably just “still cramping” from my period ending.

Endometriosis diagnoses and failed solutions

Almost a year later, I was told I had cysts, possibly PCOS, and was put on birth control. I was only 10. I didn’t fully understand what was happening. I was just happy to finally have an explanation and what I thought was a solution. But the pills didn’t work. I’d forget to take them, so they gave me the shot — which made me feel “crazy.” Then they suggested an IUD. I was still 10, and the idea terrified me (honestly, it still does 13 years later). Eventually, we went back to the pill until I was 15, when I got the Nexplanon implant. I loved it — until the second one, right after I graduated from BMT. That’s when it all changed. My life stopped being controlled by my mind and started being ruled by Endometriosis.

Losing control

From ages 19 to 23, the pain only worsened. At 22, I realized it wasn’t normal for sex to hurt. I had to plan ahead each time, making sure I didn’t have anything to do the next day because I knew the pain would leave me useless.

My breaking point

While deployed for seven months last year, I had three cysts rupture. That’s normal for me. I usually have multiple cysts at once and three or four rupture every year. I know my body so well now that I can tell when it’s bad enough to go to the doctor.

In May 2025, I finally saw a doctor who referred me to a surgeon. I made it clear I was open to surgery, but instead of scheduling it or even following up, the doctor prescribed Myfembree. In my opinion, it was the worst thing that ever happened to me. I reluctantly took it, thinking the doctor knew best, and ended up in the ER with an inflamed large intestine. They couldn’t tell if it was from the medication or the Endo. That was about a month ago.

Life now

Ever since then, just keeping up with house chores, working, or hanging out with friends feels… I don’t even know the right word — exhausting, maybe overbearing. And my sex life has basically disappeared over the past three months. We’ve tried, but even the slightest touch around my stomach or pelvic bone makes me scream or push his hand away. He’s so understanding, which somehow makes me feel worse.

Since oral doesn’t work for him, there’s not much I can do to be intimate. Without that closeness, part of me is scared of losing him. He says he’s not going anywhere, but maybe it’s my abandonment issues, the fear still lingers in the back of my mind.

Speaking my truth

Sorry for the long story. I just needed to finally tell it. The people in my life are tired of hearing the word Endometriosis — and honestly, so am I. But I guess people with cancer probably get tired of hearing cancer too. Sometimes, you just need to speak it out loud — because keeping it in hurts almost as much as the disease itself.