Living with Endometriosis: The Battle I Didn’t Choose but Learned to Fight

The Silent Struggle of Endometriosis

I can’t recall exactly how old I was when I got my first period, but I vividly remember the shame and silence that came with it. I kept it to myself, and when I didn’t get a second period for six months, I still didn’t tell anyone. The pain started when I was just a child in primary school. One day, the bleeding and cramps became so intense that I had to leave class. I pleaded with the school guard to let me go home, but he dismissed me, telling me to wait until the lesson was over. Standing there, humiliated and in agony, I felt invisible. That was the moment I realized my pain didn’t matter to others—and it wouldn’t be the last time I felt that way.

As a child, I was full of energy and passion. I loved playing basketball and was often the team’s MVP. But when school tournaments were organized only for boys, I felt a deep sense of frustration. When I asked my teacher why girls weren’t allowed to play, she replied, “Your female friends don’t know how to play.” Then she asked, “Do you want to play with the boys?” Not only did I play, but I ended up becoming their captain because I was better than any of them. Back then, I didn’t realize how much puberty would change everything. In Kosovo, boys are celebrated for becoming “men,” while girls are shamed for gaining weight, developing acne, or simply growing up. I was no exception. I was put on contraceptives at a young age, gained 30 kilograms in a year, and faced endless comments about my body and appearance. “Are you eating too much?” “Look at your acne.” “Don’t let her eat too much.” These words left their mark on me, but not in the way people expected. Instead of breaking me, they fueled my determination to never fail at anything—even if it came at the cost of my health.

The Invisible Pain: A Lifetime of Being Unheard

For 20 years, I lived with pain that no one understood. I was a constant visitor to doctors’ offices, misdiagnosed with everything from pituitary microadenoma to PCOS. I was told my pain was normal, that all women experience it. But my pain was different. It was debilitating. I remember being at a wedding, swallowing an entire pack of painkillers in an hour just to dance and smile through the agony. Later, I ended up in the hospital, but even then, no one had answers. “Maybe it was a cyst that burst,” they said. “Maybe a spontaneous abortion.” But I wasn’t even pregnant.

Finally, after two decades, I met another cold man doctor, but an expert in giving diagnosis. He diagnosed me with endometriosis and told me I had a large endometrioma on my right ovary. “This is risky,” he said. “You need surgery.” But he oVered no comfort, no explanation. Just a name of another doctor and a report that said one word: infertility. In that moment, my world shattered. I went from trying to avoid pregnancy to being told I might never have children.

The Battle with Infertility: A Journey of Strength and Sacrifice

Endometriosis complicated my fertility journey in ways I couldn’t have imagined. Male doctors insisted on surgery, while female doctors urged caution, warning that it could further damage my ovaries. I felt torn and exhausted, navigating a medical system that seemed to oVer no clear answers. Finally, I found Dr. Kuzeska in Skopje, a compassionate and assertive doctor who understood the emotional toll of my condition. She asked me, “Do you want to be a mother?” When I said yes, she explained that pregnancy could suppress the endometriosis. And so began my IVF journey—a rollercoaster of injections, hormones, and emotional turmoil. The process was grueling, but I was determined. I worked full-time, managed my household, and endured the physical and emotional strain of fertility treatments. When the first IUI failed, I felt bad, but when the second failed again I felt defeated. But Dr. Kuzeska’s words kept me going: “Calm down, Zana. You will have a baby.”

IVF was a physical, emotional, and financial rollercoaster. I was anxious, stressed, and desperate for success. The two-week wait after each procedure felt like an eternity. When I finally saw two lines on the pregnancy test, I wasn’t filled with joy—I was terrified. Pregnancy after IVF felt fragile, like a miracle that could be taken away at any moment. I gained weight, endured pain, and battled constant medical stress, but I held on, determined to bring my baby into the world. Even after giving birth to my beautiful son, Oso, I struggled to process everything I had been through. When trying to express what I was feeling, people told me, “You’re lucky. Some women go through 10 rounds of IVF and still don’t succeed.” Others would compare me to their life, telling me ‘’we gave birth to 5 or to 10 kids, while enduring any other responsibility and never complaining” But their words didn’t comfort me. They silenced me.

Postpartum Reality: When the Pain Returns

I thought giving birth would bring relief, freeing me from the responsibility of carrying another life inside me. I expected things to return to normal, but instead, I faced a new wave of turmoil. Becoming a mother at 35 brought back memories from my own childhood, resurfacing during fertility treatments, pregnancy, and after my son’s birth. Some were gentle reminders, others hit me like a storm. After my son was born, joy and fear intertwined in ways I’d never experienced. I cried constantly, waking at night terrified of losing my parents, my husband, or failing as a mother. Endometriosis pain had never stopped me before, but now I felt the weight of raising a child. Guests came to congratulate me, asking how I felt, but their questions felt hollow. I wanted to explain my struggles but stayed silent, fearing judgment or dismissive comments about how others had it harder.

We named our son Oso, after an Albanian hero, with my surname as his middle name—a piece of me I hope he carries proudly in a world that often prioritizes a father’s name. My maternity leave was only 16 weeks, and I started it early due to unbearable office hours, leaving just three months post-birth. After a traumatic labor ending in a c-section, I felt relief when the spinal injection took away the pain. Hearing my son cry for the first time was surreal, but the anxiety soon returned. A week before returning to work, I felt guilty leaving my baby but justified it as necessary to provide for him. Few understood; most judged, questioning why I wasn’t staying home.

When my aunt came to babysit, I felt relief, then guilt, then a crushing panic attack. I couldn’t breathe, numb and terrified. The ambulance came, and a dismissive doctor told my husband to send me to a psychiatrist, shaming me in front of my family. At the hospital, Dr. V. Tafilaj was different—she listened. When I asked if I had a mental disorder: “Your diagnosis,” she said, “is being too strong for too long. And that, my dear, has a price.” Panic attacks, she explained, were my body’s way of forcing me to stop when I wouldn’t. With her help, I’m learning to prioritize my health and my family. As I write this, I feel the weight of my past but also hope for my son’s future. My story is no longer just mine—it’s his too.

Takeaways

Endometriosis has been my silent companion for most of my life. It has taught me resilience, but it has also taught me the importance of listening to my body and advocating for myself. For years, I was told my pain was normal, but it wasn’t. If something feels wrong, it’s worth fighting for. Motherhood, too, has redefined me. My path to becoming a mother was not traditional, but it was mine. It was filled with pain, sacrifice, and love. And healing—well, healing is not a straight line. It’s messy and nonlinear, and it’s okay to ask for help along the way.

Most importantly, I’ve learned the power of breaking the silence. Endometriosis is often invisible, but sharing our stories can create change. Let’s talk about periods, pain, and the realities of living with chronic illness. Let’s make sure no one else must stand in silence, clutching their pain, waiting for someone to listen.

I am Zana and this is my story—a story of pain, resilience, and healing. It’s a story I hope will inspire others to keep fighting, to keep speaking up, and to never let their pain be silenced. Because every story matters, and every voice deserves to be heard.