Patient Stories

My name is Genna, and I am a 49-year-old woman living in Ottawa, Ontario, Canada. I want to share my journey through years of unexplained medical challenges—a journey that has been as frustrating as it has been bewildering.

My story began in my early twenties when I was a university student. I vividly remember the first episode, an experience so alarming that my roommates rushed me to the ER, convinced I was having a heart attack. At that moment, I was terrified. It felt like my body was betraying me, and I didn’t know why.

That visit to the ER was just the beginning. Over the years, I found myself returning again and again. My symptoms were always alarming enough to warrant extensive tests—blood work, X-rays, MRIs, and more. Yet, despite the sheer number of tests and consultations, the results were always the same: nothing was wrong. Time after time, I was told that everything looked normal.

With no clear answers, I was eventually diagnosed with anxiety and depression, a catch-all explanation for my symptoms. For years, I tried to accept this diagnosis, thinking that perhaps my mind was indeed the root cause of what I was experiencing. But deep down, I always wondered: Could there be more to this story?

By April 2023, my symptoms had reached a breaking point. I stopped working, unable to cope with the overwhelming fatigue, chronic pain, heart palpitations, profuse sweating, migraines, trouble concentrating, and constant agitation. Every day felt like a struggle. And yet, despite the debilitating impact on my life, I was met with the same dismissive responses I had encountered for years: You’re not exercising enough. You’re not resting properly. You’re not practicing mindfulness the right way. Surely, you’re not eating well enough.

At one point, I read a note from a doctor that summarized my experience in the most dismissive terms: Patient is upset because we can’t find an explanation for her fatigue. That sentence haunted me. It reduced the years of suffering I’d endured to a simple inconvenience—as if my frustration with the lack of answers was the real issue.

Thankfully, I decided to change doctors and found a family doctor and nurse practitioner who truly listened to me. They suggested I take time off work to rest and focus on figuring out what was really going on. For the first time in over 20 years, I felt heard. It was a relief not to be told that everything was “in my head.”

The testing began anew. My doctors wondered if poor sleep could be contributing to my symptoms. After months of waiting, a sleep test revealed that I had mild sleep apnea. It wasn’t a full answer, but it was a step forward.

During this time, my absence from work weighed heavily on me. I loved my workplace and took great pride in being seen as a professional who was dependable and dedicated. But now, I worried about how my prolonged sick leave might affect my credibility. What did my team and supervisors think of me? Would I lose their respect? On top of that, I knew my absence put additional strain on an already understaffed team. The guilt was tremendous.

As the wait times for further testing and appointments stretched on, I made a difficult decision: I informed my Canadian healthcare providers that I would be going to Portugal to seek answers through their private healthcare system. I would pay for everything out of my own pocket, desperate to uncover the truth.

Within just three weeks, I finally had a diagnosis: pheochromocytoma. A hormone-secreting tumour in my left adrenal gland. This one discovery explained everything—every symptom I had been living with for years. The heart palpitations, the sweating, the fatigue, the migraines, the agitation, the inability to cope with stress—it all made sense.

What stunned me most was the simplicity of the test that led to the diagnosis: a 24-hour urinalysis to measure metanephrines, a type of hormone marker. A test that could be done at home. After all these years of ER visits, specialists, and endless scans, why had no one thought of this before? Why did it take decades for someone to measure metanephrines?

Years and years of suffering could have been prevented. Had this been discovered earlier, what impact could this have had on my life? Perhaps I wouldn’t have broken down in tears during stressful work meetings. Perhaps I could have avoided the embarrassment of not appearing as professional as I strived to be. I could have performed better in interviews and progressed in my career more quickly.

More importantly, perhaps I could have been a better parent to my children. With more energy and better health, I could have been more present—both physically and mentally.

In December 2023, I underwent an adrenalectomy at The Ottawa Hospital to remove the pheochromocytoma. While the tumour is gone, my energy levels have not been restored. My remaining adrenal gland does not produce sufficient cortisol, leaving me adrenal insufficient. I now wonder: could this have been a result of years of stress on my adrenal glands due to the overproduction of metanephrines? Could my adrenal gland have been spared this stress if the diagnosis had come years earlier? Would I still have a functional adrenal gland today?

We will never know the answers to these questions. But one has to wonder what the outcome might have been if a health professional had thought to test for this so many years ago and not dismissed me with statements like the one from a family doctor who once told me: There is nothing medically wrong with you.

My journey is not over. I am now receiving care at the Princess Margaret Cancer Centre in Toronto, where testing and surveillance continue. Together, we are working to uncover more answers and solve the enigmas of these complex health issues. This chapter may not yet be closed, but I am determined to keep fighting for the care and understanding I deserve, that we all deserve.