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Endometriosis Chronicles: From Patient to Advocate, My Journey of Empowerment - Milcah Macatiag’s Endo Story

Endometriosis Chronicles: From Patient to Advocate, My Journey of Empowerment - Milcah Macatiag’s Endo Story

My name is Milcah Macatiag. My friends and colleagues call me Mylks. I’m a critical care nurse in Northern California with three decades of experience in healthcare. My professional journey has led me through several pivotal roles at two companies. Today, I specialize in special procedures with a focus on gastroenterology and interventional radiology, a transition deeply influenced by my endometriosis surgery in 2019.

My journey through womanhood was marked by unexpected challenges from a young age. The onset of my first period brought debilitating pain, overwhelming cramps, and symptoms that I was wholly unprepared for. These experiences left me feeling isolated and misunderstood, with questions about what it meant to be a woman and a longing to escape from the physical and emotional tolls. The pain alone became a solitary battle, with only the comfort of a hot water bottle as a source of relief.

For fifteen years, I endured this pain that affected every aspect of my life. It led me to seek surgical intervention despite the hesitation of my consulting OB-GYN. Unfortunately, the aftermath of the surgery left me with more questions and pain than answers. The diagnosis of endometriosis, with a suggested solution of a hysterectomy, was devastating news at the age of 26. The journey for relief led me to experiment with birth control pills, which only compounded my suffering. The lack of information and understanding about endometriosis at the time left me feeling even more isolated in my struggle. Because of a lack of treatments, I learned to anticipate the pain, relying on over-the-counter medications that provided minimal relief.

In 2018, my health took a significant turn for the worse. Alongside the chronic pain, I began experiencing fatigue and severe breathing difficulties. A CT scan revealed that 80 percent of my right lung had collapsed, necessitating emergency medical intervention. Although VAT surgery was suggested, I sought alternative opinions, leading me to two endometriosis specialists, whose interventions finally offered me relief and hope.

Today, my mission extends beyond my personal battle with endometriosis. I am a school board member and serve as our community’s events planner for fundraising initiatives. My passion for service and my entrepreneurial spirit led me to launch a non-emergency transport business during the COVID-19 pandemic. And, most recently, I became an endometriosis educator.

That educator role happened by chance last year when I participated in EndoFound’s Patient Day in New York City. I was there seeking information on thoracic endometriosis. However, I found myself drawn to EndoFound’s ENPOWR initiative. Reflecting on my own experiences, I felt a profound connection to young girls facing similar challenges. Inspired, I returned to California, determined to initiate awareness campaigns in schools to ensure that middle school and high school students receive the knowledge and awareness that I once lacked. Last fall, I became the first volunteer to introduce the relaunched ENPOWR program in America’s schools.

Through education, I will always be driven to empower those affected by endometriosis, focusing on lifestyle changes as a means to manage it. Life without pain is a game-changer, as I’ve been given a new life to enjoy the things I couldn’t do before. My journey from patient to advocate and coach reflects my commitment to transforming personal adversity into a catalyst for change and support for others navigating the complexities of endometriosis. Together, we can beat this disease.

To become an ENPOWR educator, visit https://volunteer.endofound.org/need/detail/?need_id=841036

*Patient stories submitted to EndoFound.org are the patient's views, not necessarily those of the foundation. All testimonials are from real patients, may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.