Beyond the Diagnosis: How My Journey Led Me to Create This Space & Find Power Within

2020 will forever be remembered as a year of unprecedented chaos, calamity, and challenges for many. The global pandemic brought sudden and significant adaptations to new regulations and restrictions worldwide. Hospitals around the globe were hit hard by COVID-19, grappling with severe understaffing and the complexities of an unknown virus. As a direct consequence, countless patients on waiting lists for specialist appointments or essential operations faced disheartening delays, which profoundly impacted their physical, emotional, and mental well-being.

While navigating the front lines as a registered nurse during this tumultuous period, 2020 also marked a critical turning point in my personal life. It was the year the endless pain I had endured for years finally reached its peak. This agonising escalation initiated a relentless cycle of emergency department admissions, frustrating misdiagnoses, and tiring battles with doctors, all before I finally received a confirmed diagnosis of endometriosis. This was the beginning of my journey to not just survive, but to find a deeper power within.

It all began with extreme fatigue, followed by sharp, knife-like stabbing pains on the lower right side of my abdomen. Initially, I mistakenly thought I had appendicitis due to the localized pain, nausea, fever, and vomiting – and so did the emergency doctors. However, my post-operative pathology results revealed I never had appendicitis, and the surgeon's report simply stated my ovaries and pelvis were "normal." Confused and distressed, as the pain lingered and worsened two months post-op, I began to worry intensely about what could possibly be wrong. I started my own research, where the term "endometriosis" did surface. Yet, I remained uncertain until my mother mentioned she had endometriosis. This sparked a pivotal question in my mind: "What if I have it too?" While it seemed a plausible possibility given its genetic predisposition, I knew, as a health professional and from my research, that diagnosing endometriosis is incredibly challenging and requires laparoscopic surgery for confirmation.

Upon mentioning my symptoms and my mother's history of endometriosis to a team of gynaecologists during my first hospital admission after the appendectomy, my theory was quickly dismissed. "You don't fit the criteria for endometriosis," they stated, diagnosing me instead with interstitial cystitis. Sent home with a mix of confusion and a profound sense of not being listened to, I desperately hoped they were right, and I was wrong. I even began to wonder if it was all in my head. This moment of doubt, however, inadvertently fuelled my determination to find answers, even if it meant looking beyond conventional pathways.

Little did I know, this was merely the beginning of endless ER admissions and countless GP visits. I eventually gave up on the hospital system, feeling that nothing substantial would ever be done there; doctors would simply provide pain relief and send me home, making no further progress toward a diagnosis. Each visit left me feeling more gaslighted and ignored. With every hospital admission, with every doctor's visit, my health condition relentlessly deteriorated. My fatigue intensified, I began experiencing pain with urination and bowel movements, nausea, vomiting, and most alarmingly, the pain started to spread beyond my menstrual cycle, engulfing my entire lower pelvis to the point where I could no longer walk. I became dependent on a wheelchair, my father had to carry me to the bathroom, and my mother assisted with showering. This rapid progression stripped away my independence, transforming me from a then self-sufficient 28-year-old into someone unable to perform basic self-care. A heavy toll was exacted on my mental health, and I distinctly remember crying to my parents in the early mornings, feeling like I couldn't carry on, contemplating giving up. I prayed daily for a miracle, for someone to truly listen to me, while simultaneously grappling with the despairing questions: "Why me?" and "If no doctors can help or listen, then no one can." This spiral of anxiety led me into a deep depression, yet it also began to forge a quiet resilience within me.

I am eternally grateful for the unwavering support of my friends and family during that incredibly difficult period. Without them, I would have truly given up all hope. While I continued my search for answers and guidance on what to do next, my cousin and aunty introduced me to Buddhism, teaching me invaluable techniques to manage the pain with my mind. This spiritual grounding also provided a crucial foundation for my renewed sense of self-advocacy. It wasn't until late May 2020 that I decided to take a chance. I sought out an endometriosis specialist and surgeon in the private sector because I simply couldn't shake the gut feeling that I had endometriosis and desperately needed another opinion. It was a gamble of both money and my health, but a necessary step in reclaiming agency over my body. To my surprise, when I arrived at his office, he already had all my hospital and GP notes. After reviewing them, he stated that endometriosis was a strong possibility, though confirmation would require a laparoscopic examination.

I was undeniably anxious, worried that nothing would be found, and I would be back to square one. However, during my first consultation with him, I felt an unprecedented sense of safety and validation. I had a profoundly good feeling about him and implicitly trusted his knowledge, expertise, and skills. In that moment, I made a silent vow to myself: if it turned out I had endometriosis and recovered, I would dedicate my life to helping other women with this condition, improve my clinical nursing knowledge and practice to become an even better nurse, and passionately advocate for others suffering with similar symptoms. My goal was to prevent diagnostic delays and help them navigate the complex healthcare system so they could be seen as soon as possible, thereby transforming my personal struggle into a source of collective empowerment

After many hours in the operating room, the surgeon confirmed my long-held suspicion: I had endometriosis. He validated my experiences, telling me I was right all along and that from now on, I would feel better. This experience profoundly changed my life. As strange as it sounds, I am incredibly grateful I went through this journey, despite living with endometriosis. It taught me to be a better nurse, to view life through a different lens, to never take the little things for granted, and to truly live life to the fullest. I am also immensely grateful for the other supportive doctors and nurses who, through their compassion and dedication, restored my faith and hope that there are indeed healthcare professionals who will listen and never give up on you. This experience was the crucible in which I found my inner power and purpose.

You might be asking yourselves why it has taken me so long since my 2020 diagnosis to create this platform. Well, there are many reasons. Firstly, I was scared and unsure if anyone would be interested in such a space. It took years to build up the confidence to embark on a project of this magnitude. Additionally, I went through significant life changes, including branching into software development while still maintaining part-time work in women's health. I also chose the sensible avenue of consulting with the NZ Nurses Organisation and regulatory body before launching this website. My hope is that the stories shared by brave individuals here, alongside simplified medical information, will serve as a beacon for others currently navigating the unknown or facing difficulties in getting a diagnosis or living with a chronic illness. Most importantly, I do not want anyone else to endure what I did. As a health professional myself, like so many others, I faced immense difficulties in getting a diagnosis. Therefore, I envision this platform as a critical bridge to meet this glaring gap in care. I sincerely hope this platform encourages you to not give up, to learn how to live well with chronic conditions like endometriosis, and to discover the power within your own journey.

As the founder of this platform, three things are paramount to me: your safety, ensuring that accurate and up-to-date medical information is simplified and delivered in a way you can comprehend, and that you can genuinely resonate with the stories shared here. I hope you take something valuable from our contributors on how they coped and managed their conditions during challenging times. I also strive to provide information from a diverse range of health professionals from various backgrounds. Please keep in mind that while there is abundant information available online, this platform is based in New Zealand. Therefore, the information from our contributors (who will feature on this platform) will be NZ and Australian-certified health professionals. If you are based in another country, please refer to your local guidelines as practice and advice may differ.

Ultimately, this space is born from a belief in shared experience and the power of connection. My deepest hope is that by sharing stories, insights, and resources, we can collectively light the path forward for others, empowering them to navigate their health journeys with courage, knowledge, and an unwavering belief in their own inner strength.

Remember, you must always believe in yourself and that you are not alone on this journey. Together, we can redefine what it means to live beyond chronic illness and truly find power within.

Left image: my wonderful nurse colleagues and I on our break time during the pandemic. I feel incredibly lucky to have worked with an amazing team of nurses who understood what I was going through. Right image: recovery photo post-op after my first endometriosis surgery. Big thank you to my specialist and surgeon Dr Anil, the anaesthetist, and the caring nurses at Mercy Hospital, Greenlane, Auckland.