What an Endometriosis Flare-Up Feels Like to Me

As I sit recovering from my most recent surgery, I can’t help but reflect on how long this journey has been. It’s been over 20 years but I can still remember the first time endometriosis made itself known. I was a young girl, just starting my first period, and the pain was unlike anything I had ever felt before. It wasn’t just cramps; it was something darker, more insidious. Back then, I didn’t know any better, I thought maybe this was normal. It wasn’t until years later—after countless dismissals and being told, “it’s just bad cramps”—that I was finally diagnosed in college. By that time, endo had already taken root in my life, leaving a trail of unanswered questions and years of silent suffering.

Living with endometriosis means carrying an invisible weight. On the outside, I often wear a brave face—a forced smile, a nod, and a faint laugh to make others feel comfortable. People rarely see what lies beneath. When someone asks how I’m feeling, my automatic response is, “I’m fine.” Not because I am fine, but because the truth is too heavy to share. Explaining the exhaustion that seeps into my bones, the stabbing pain, or the nausea that lingers feels pointless when most people aren’t prepared for the honest answer.

During recovery from a biopsy, a friend asked me, “What does it feel like to have Endometriosis?” That moment caught me off guard. It wasn’t the usual polite inquiry that ends with a quick change of subject. My friend genuinely wanted to understand and listen. In that moment, I found myself tearing up, overwhelmed by the simple act of someone asking—not just about the pain, but about all of it.

So when I tried to brush them off with a generic “It’s painful but there are worse things in life," response, they looked me in the eyes and asked again, “How do you really feel physically and emotionally?” Their persistence broke something inside me, in the best way. As tears poured out of my eyes I answered the question unfiltered and as raw as I could. 

Endometriosis is far more than just pain. It trickles into every corner of life, making even the simplest tasks feel like monumental challenges. The constant fatigue is like a heavy fog, wrapping around me and pulling me down with every step. It’s not just physical; it’s mental and emotional, draining every ounce of energy until I feel like an empty shell of myself.

Last-minute cancellation is a result of battling a chronic illness. I’ve missed birthdays, weddings, and simple nights out that I desperately wanted to attend, all because my body decided it had other plans. It’s not that I don’t want to be there—I do—but endometriosis doesn’t care about schedules or commitments. The isolation that comes with this condition is its own kind of heartbreak, making you feel like an outsider in your own life

Expert Bathroom Scout

Bladder issues add another layer of frustration. The constant urgency to use the restroom dictates my schedule, making me feel like my life revolves around proximity to a bathroom. It’s isolating and exhausting to explain how much this limits my freedom. Having endometriosis has turned me in to a world class bathroom scout.

The Truth About Endometriosis and Infertility

For me, infertility has been a quiet storm of grief and loss. As a young girl enduring the debilitating pain of endometriosis, I gradually let go of the idea of having children. The thought of being a mom—the kind who runs, plays, and keeps up with her little ones—felt impossible when I couldn’t even make it through a day without pain and was struggling to take care of myself. At the time, I didn’t share these thoughts with anyone. I wore my decision to not have kids like a badge of defiance, a way to shield myself from pity or judgment. But deep down, there were names I had picked out and family moments I dreamed of. Over the years, I’ve faced miscarriages and the harsh reality of fertility challenges, each loss was mourned quietly as if I keeping the fact that I may want kids a secret. People assumed I never wanted children, but that wasn’t the full story. Even though I am at peace with my decision not to have children, there’s still an emotional toll to having that choice taken away or making the right choices for my health and body. Women who opt not to have children are often misunderstood. It’s not a lack of love for children; it’s a choice or circumstance rooted in personal journeys that deserve respect, not judgment.

Food Triggers & Endometriosis

Dealing with food triggers when you have endometriosis feels like a constant high-stakes gamble, one wrong choice can send my body into an inflammatory meltdown. Hiring a nutritionist isn’t just helpful; it’s a necessity. Sometimes, it takes a team to figure out what works, but the burden of piecing it all together still falls on me.

For me, this journey has included allergy testing, elimination diets, and food journaling to identify hidden triggers. I log every bite and every reaction—nausea, pain, bloating—only to find that one flare-up can undo all my progress. The trial and error is not just frustrating but emotionally draining. Meals that once brought me joy now come with anxiety, and every plate feels like a round of roulette.

The foods that once comforted me—my abuelita’s sopa, a plate of tacos, or even a slice of cake—have become potential threats. Cooking has shifted from creative joy to a cautious experiment, where every ingredient is tested for its potential to harm me. It’s a never-ending negotiation with my body, searching for a way to eat without triggering pain.

Managing Romantic Relationships is Challenging

Intimacy with endometriosis often feels like a delicate balance, where even the moments meant to bring closeness can result in searing pain. Painful intercourse becomes a constant shadow, creating physical barriers that can be hard to discuss and even harder to overcome. What should be an expression of love and connection often turns into a source of anxiety, frustration, or guilt—not just for you, but for your partner too. The emotional weight of trying to be intimate in a body that feels unpredictable leaves behind scars that linger far beyond the moment.

These challenges ripple through the foundation of a relationship, testing even the strongest bonds. Open communication is critical but exhausting, as explaining how pain dictates your limits sometimes feels like admitting defeat. Partners can struggle to understand what you're going through, even when they try their best to be supportive. Over time, the strain can breed resentment, isolation, or feelings of inadequacy on both sides. Endometriosis doesn’t just affect your body; it trickles into your relationships, forcing you to figure out love and connection in ways you never imagined.

Endometriosis Gives Work Life Balance an Entirely New Meaning

Holding down a job with endometriosis feels like running a marathon on an uneven path, only your body keeps throwing new obstacles in your way. Imagine sitting at your desk, trying to focus, while worrying if you’ve bled through your tampon or pad—again. Some days, I’ve had to change every 30 minutes, running to the restroom so often that I’d get side glances from coworkers. The fear of leaking onto my clothes or chair is constant, and no matter how prepared I think I am, the unpredictability of my body always seems to win.

Remote work isn’t just a preference; it’s a lifeline. At home, I have quick access to restrooms when the bleeding become too heavy to manage in public, a heating pad to ease the pain, and the freedom to lie down when my body gives out. But even working from home comes with its own challenges. Trying to stay productive when you’re battling a chronic illness isn’t easy—meetings don’t stop for bathroom breaks or sudden waves of nausea. Still, it allows me to work in a way that accommodates my body’s unpredictable needs, and for that, I’m grateful. It’s not a perfect solution, but it’s the only way I’ve found to keep moving forward in a world that wasn’t designed for someone like me.

Every journey with endometriosis is unique. Some women experience mild symptoms and go about their lives relatively undisturbed. Others, like me, fight a daily battle that consumes every part of their being. That’s why it’s so important to listen, to ask questions, and to create spaces where those with endo feel seen and heard.

For the endo and adeno warriors sitting on their bathroom floors, wondering if anyone else understands—I see you. For those afraid to share their symptoms for fear of dismissal or lost job opportunities—I hear you.

 Endometriosis is a thief, but it’s also a teacher. It has taught me resilience, compassion, and the power of sharing our stories. Thank you for reading, for listening, and for giving me the courage to continue sharing.