My Endometriosis Story - A journey from a devastating health ordeal to a fulfilling career in Preventative and Integrative Health

My Endometriosis Story - A journey from a devastating health ordeal to a  fulfilling career in Preventative and Integrative Health

The story begins over 40 years ago. I was a young, hopeful girl excited for my teenage years. I am an only child and was a competitive gymnast with so many dreams and a zest for life.

From the day that I had my first menstrual cycle, I suffered with PAIN. This pain was not mild but rather debilitating and was accompanied by so many other symptoms that hijacked my life for years.

My belly was often distended so badly that I looked six months pregnant. I had severe gastrointestinal issues and I often dealt with nausea and vomiting.

At first these symptoms only appeared during my menstrual cycles but before long, these symptoms would show up at any time of the month, without notice and literally began to rule my life.

And so it began, a decade of countless trips to doctors, specialists and emergency room visits to try and get help and find out what was wrong with me. These visits were often humiliating, demoralizing and fruitless.

Doctor after doctor labelled me as a hypersensitive only child, a drug seeking teen and a competitive athlete with a nervous stomach. I was an only child and yes I have a competitive and type "A" personality. However I was just a young girl who wanted to be out of pain so I could enjoy life to the fullest like my peers. No one was listening.

As I reflect on my experience as a young and vulnerable girl, I was treated so poorly. I have lost count of the number of times my parents were asked to leave the room so that a doctor could interrogate me about my sex life. They would repeat their questioning with a skeptical tone and it was clear to me that they didn't believe that I was telling the truth. They often speculated that my pain was a result of an ectopic pregnancy before running any blood tests or that I was simply attention seeking. I had countless ultrasounds, even transvaginal ones at a very young age, x-rays and blood work but I was told that I would have to deal with my normal period pain and was prescribed birth control pills and anti inflammatories.

My parents were my biggest supporters and did their utmost to try and advocate for me as I was young and too sick to do it myself. I suffered emotionally as I was missing out on what should have been a carefree time of my life. It got to the point that I was embarrassed to say to family, friends or co-workers that I wasn't feeling well enough to participate in the latest special event that was taking place. People got sick and tired of me being sick and tired.

It wasn't until my third year at The University of Waterloo that I ended up yet again in the emergency department, doubled over in pain but this time I was determined to not leave without answers.

I will never forget the very condescending physician who told me that my history suggested that I may have a disease called endometriosis however I looked too well and therefore he felt it was unlikely. He believed that my pain was probably just normal period pain and I would need to figure out how to cope better! He went on to inform me that if I really wanted to find out, he would reluctantly have to perform a laparoscopic surgery. I didn't hesitate and stood my ground and advocated for this diagnostic laparoscopic surgery.

Little did I know after the surgery, that despite feeling initial relief that I finally had a diagnosis of endometriosis (and that I wasn't "crazy") I was not prepared for the years of suffering, mistreatment and emotional trauma that I was about to face as I tried to live with and navigate this chronic illness.

Even though I now knew the reason behind my suffering, I was faced with a system that didn't know how to treat my disease. Back then, it was rare to find a doctor or specialist who knew anything about endometriosis.

According to The Endometriosis Network Canada (TENC) today in 2024:

  • 8 in 10 people with endo were initially told their pain was normal before diagnosis - check, that was me!
  • $2.5B is the estimated cost of endometriosis on the Canadian health care system per year - check, my countless hospitalizations and testing contributed to this staggering number
  • 1 in 5 people with endo have lost or quit a job at some point during their life because of the disease - check, yes I had to quit summer jobs as I had debilitating flareups that prevented me from being able to work.
  • 5 years is the average time, and sometimes much longer, before a diagnosis is made - check, it took me 8 years!
  • 4 in 10 people with endometriosis have difficulty reaching their educational goals - check, had to leave University and my post grad studies in my third year to seek treatment and surgery
  • 9 in 10 young people who miss school due to endo symptoms do so because their periods are too painful - check, too many days to count!

The years ahead led to four bowel obstructions, a lung collapse (yes, I had endometrial type tissue on my lung), struggles with infertility, 10 surgeries and serious mental health struggles.

Despite the fact that I was determined to not let this diagnosis define me and hijack my life, my severe chronic pain penetrated every aspect of my life, mentally, physically, emotionally and spiritually. I struggled to finish my education, it impacted my career in the early days, my family suffered and I felt like a burden and of course my overall health and vitality was impacted. I was truly robbed of my youth.

I was desperate for answers so I could live my life without pain. Sadly, the one answer that our healthcare system had for me was pain killers. Don't get me wrong, I am not against pharmaceutical drugs as a short term solution but this was all that was presented to me when it came to managing my endometriosis. I began to rely on this very harmful approach to treatment but longed for other more effective, sustainable and safer methods of management.

Over time, this became an issue for me as these drugs are addictive and destructive and I didn't want my life to be controlled by these harmful substances. When I look back at that chapter of my life, I feel sad and embarrassed that I allowed myself to go down this path to try and navigate this disease.

Fortunately, thanks to the amazing work, research and dedication of Dr. Mathew Leonardi, the future for women suffering with endometriosis is brighter with a more holistic approach to care.

Dr Mathew Leonardi is an advanced gynaecological surgeon and sonologist (ultrasound specialist) at McMaster University Medical Centre in Hamilton, Ontario. He is an avid researcher, actively contributing academically to the advancement of women’s health and the improvement of clinical care.

However, when I look back now at my story, I realize just how vulnerable I was and how I was at the mercy of the doctors I entrusted with my care. I wasn't given any options other than pain medication to help me stock my toolbox.

It was this realization that ignited my passion for advocacy and change. I rolled up my sleeves and began to do the work necessary to pull together my own integrative healthcare team that supported me in finding effective evidence informed strategies that helped me switch from barely surviving to thriving. It was from this very personal experience my deep passion for preventative and integrative health was born!

I became the CEO of my Health and learned so much along the way. Although my journey has been a challenging one, there was a gift amongst the struggle. My journey taught me that if it wasn't for allopathic medicine, I wouldn't be here today as I needed those surgeries and nasal gastric tubes when I had a full blown bowel obstruction. However, what was also equally and as profoundly true, it it wasn't for complementary medicine, I wouldn't be here or perhaps would be but in a very different, unhealthy state!

Little did I know at the time that my experience would become the foundation and fuel that would stoke my three decade fulfilling career helping to educate and empower people to find their voice and Become the CEO of their Health.

On April 6, 1992, I took a leap of faith and opened Wallis for Wellness , a multi-disciplinary preventative and integrative health clinic that brought together professionals from both allopathic and complementary medicine under one roof. As a team, we believed that everyday people are the MOST important member of their healthcare team.

Over the course of 30 years, Wallis for Wellness blossomed into an award winning integrative health clinic with 80% doctor referral. Our focus was on patient education to help build health esteem and empower patients to advocate for and play an active role in their health.

As we celebrate Endometriosis Awareness Month, I am determined now more than ever to continue to do my part in educating and empowering women to use their voice, change their mindset and help them find their integrative and preventative healthcare team so they can better navigate the healthcare system and thrive through every age and stage of life. We have come a long way, but there is still so much work to be done.

My challenging endometriosis journey and the thousands of stories I have heard over the course of my career at Wallis for Wellness lead me to become the visionary of the first ever Preventative Health Awareness Month/Movement recognized by Health Canada , otherwise known as PHAM.

This grassroots campaign brings together healthcare professionals from allopathic and complementary medicine (we call PHAMbassadors) to help educate and empower Canadians to advocate for and Become the CEO of their Health. Our goal of this social health movement is to shift the mindset of Canadians from the current "pill for an ill", wait until it is broken approach to one that is more proactive, patient partnered and focused on prevention.

We are finding a variety of ways to share education online in social media as well as on a podcast and TV Show called PHAMcast in collaboration with Cogeco TV.

I am honoured to be the founder and co-host of this important platform alongside my friend and colleague Megan Buhrmester of Osteosound.

Our mission of this podcast is to bring people and healthcare professionals together to have organic, empowering and inspiring conversations about health without judgement. We are determined to become a trusted resource to help stock your toolbox with effective tips and strategies to improve your holistic health.

Have a story to share or perhaps you are a professional and would like to be a guest on the show? Reach out to me at [email protected]

Remember, a Healthy Tomorrow begins with Prevention Today!