My Endo Agony Unmasked: Surviving with Constant Pain, Seeking Answers and Relief

Hello and welcome to my blog, Endo Agony Unmasked. My name is Kayla, and I’m here to share the raw, unfiltered reality of living—if you can even call it that—with endometriosis. This is my story of enduring daily torment, navigating the healthcare system, and fighting to survive each day.

My Journey with Endometriosis

I was diagnosed with endometriosis at 19, way back in 2007, long before it was widely recognized. I was in college, excited about my studies and the future. I had always struggled with painful periods, but one day, I felt a sharp pain like something had popped inside me, and everything changed. After weeks of pain that kept me from attending classes and working, I finally saw my family doctor, who referred me to an OBGYN.

I’ll never forget my first visit to the OBGYN, Dr. Smith (not his real name). He asked why I was referred to him at such a young age. I explained my symptoms and how they had turned my life upside down, forcing me to drop out of college, straining my relationship, and making work impossible—all while fighting back tears. Dr. Smith’s response was dismissive: “It seems like you googled endometriosis and memorized the symptoms. You have two choices: continue managing the pain or opt for surgery, though it’s likely unnecessary and risky. I’d advise you to wait.”

In disbelief, I gathered my thoughts and told Dr. Smith, “The current ‘treatment’ isn’t working, and I can’t function on Tylenol 3. I’ve been suffering for months. I want the surgery to find out what’s going on.” He sighed, agreed, and walked out.

After the surgery, during the follow-up, Dr. Smith entered the room somberly and apologized for not believing me. “You do have endometriosis,” he said, “and it’s severe. I’m referring you to a specialist.”

The specialist, Dr. Nicholas Leyland in Ontario, and I discussed options, and we decided on an IUD and Laparoscopic Uterosacral Ligament Excision (LUNA). The surgery revealed extensive endometriosis on my bladder, bowels, abdominal wall, and ligaments. Recovery was painful, particularly from the gas used during the procedure.

Post-surgery, the pain decreased significantly, and with an IUD, my symptoms were mostly controlled—until my husband and I decided to try for a baby in 2018. I had my IUD removed, and I got pregnant in 2019, giving birth to my daughter in March 2020. During the time between IUD removal and pregnancy, the pain began to increase again but was not as severe as before. After giving birth and recovering from unrelated complications, I requested another IUD, but due to COVID-19, non-emergency appointments were delayed.

In the meantime, my period became erratic and painful. When I missed a period, I took a pregnancy test and was shocked to find it positive. Despite it being a surprise, we were excited, although our daughter was born nine weeks early (another story for a future post). Immediately after her birth in 2021, I got an IUD put in. However, this time, it didn’t alleviate the pain, which continued to worsen before and after my periods.

The Endless Search for Answers

Two years ago, my life changed drastically. As a Registered Nurse, I was accustomed to the demands of my job, but nothing prepared me for the debilitating pain of endometriosis. The pain was so intense that I nearly passed out during shifts, forcing me to leave work early and go on long-term disability. This decision was not made lightly, but the pain was unbearable.

Since then, my life has been an endless cycle of appointments, ER visits, tests, ultrasounds, and referrals. Each test offered hope, but each result brought more questions. Some referrals were outright refused, while others had waitlists of over two years. Ultrasounds revealed a growing cyst and an ovary eleven times its normal size, yet still, no action was taken. The healthcare system, though robust, has been a slow-moving maze, worsened by the pandemic.

The Unrelenting Pain

Two years have passed, and I am still in constant agony. Every day is filled with pain, sometimes more intense than others, but it’s never completely gone. I am still waiting for a specialist consultation. Despite being on long-term disability, the reality of returning to work looms over me. I feel like I’ve tried everything to manage the pain, but nothing seems to help. ER visits have been futile, leaving me to survive day by day in excruciating pain. Today is one of those unbearable days—I can barely breathe, and even two Tylenol 3s aren’t helping. If I try to stand or move, a sharp, familiar pain stabs through me.

The Impact on My Life

This relentless pain has stolen so much from me. I struggle to work, play with my kids, and function in daily life. The agony is ever-present, and the lack of answers or solutions feels like a cruel joke. I’ve been told to wait—possibly another two years—or seek costly medical help outside of Canada, an option that is financially out of reach. How is this the reality of the Canadian healthcare system? Many of us are forced to seek surgery abroad just to escape the pain.

Seeking Connection and Support

Through this blog, I hope to connect with others enduring the silent struggle of endometriosis. My goal is to share my experiences, provide support, resources and raise awareness about the realities of living with this condition. If you’re going through something similar, know that you’re not alone. Together, we can highlight the true impact of endometriosis and push for better understanding and care.

Thank you for reading my story. I invite you to join me on this journey as we unmask the agony of endometriosis and strive for a future with answers and hope.

Warm regards,

Kayla