Growing up with Endometriosis

“You have endometriosis,” my gynaecologist says to me as I wake up from my emergent laparoscopic surgery in 2018. “I removed as much as I could. Here’s a prescription for birth control and/or an IUD.” And just like that I landed a surgical endometriosis diagnosis, nonconsensual removal of endometriosis, and a prescription to curb my lifelong symptoms.  

I remember sitting in that hospital bed at 17 years old and immediately Google searching “endometriosis” (at that time I couldn’t even spell it properly). The first words I saw were “incurable” & “chronic pain.” After that moment my life was altered completely, but I still remember how it felt to live right before that. To live with hope of achieving my dreams, my career and my timeline; but then I saw those words. 

As a type A personality who has lists, goals, and timelines for everything, this disease has completely uprooted my life and who I am as a person. I have had absolutely everything stripped away from me but continue to have the courage to open my eyes in the morning and keep breathing. I am so grateful that I had and continue to have the strength to live; when it comes to living with endometriosis, death and mortality become attractive concepts. 

Ever since my cycles began at 12 years of age, I remember experiencing pain severe enough for medication. I had also struggled with constant fatigue, multiple deficiencies (vitamins and minerals, iron in particular), and stomach discomfort diagnosed as celiac disease when I was 13. Due to my Mom’s experience with adenomyosis & chronic menstrual pain, she pushed me to treat with pain medication and alternative supports such as acupuncture. This was just something every individual AFAB (assigned female at birth) in my family dealt with, this is the burden of being a woman. Nobody in my family, including my Mom, had any concept of the magnitude and severity of this experience. I was the first to receive an official diagnosis and realize that menstrual pain is not normal. I was the first person in my family that was listened to. She had been gaslit her whole life and denied a diagnosis that her daughter (me) was about to receive. I was about to walk the path she did not experience until her 30’s. 

I still remember the night of my diagnosis surgery despite numerous efforts to forget. I don’t remember the words, results, or even the clothes I was wearing very clearly, but I vividly remember the feeling of terror I experienced. I remember it as I write this, and tears come to my eyes. I had about an hour between finding out that my ovary was torsioned to being under anesthesia in the OR. It was impossible for me to process what was happening or about to happen to me — the surgeon’s focus was to save my ovary, as it should be, but I remember every part of my body screaming at me to leave the hospital. My focus was to get out as fast as possible. 

Surgery is terrifying for me because I always experience high levels of pain when coming off the anesthetic. During my first surgery for a large dermoid cyst when I was just 14 years old, I woke up and went into shock right away. I remember convulsing, chattering, and screaming in my head, but my mouth wouldn’t move because my pain was absolutely agonizing. During this second surgery I didn’t wake up with the same amount of pain, but I felt the same nonetheless. I felt violated, insecure, medicalized, traumatized, and distraught. I didn’t want to be in pain, I didn’t want to come to the hospital, I didn’t want this surgery and I certainly didn’t want this diagnosis. What had I done to deserve this? 

The lack of communication and informed enthusiastic consent throughout my health journey has rocked me to my core. My body, soul, and mind will never be able to forget the violating and powerless experiences I had to withstand and continue to experience. To this day I am still trying to process the trauma of having endometriosis in Canada; trauma that no human being, let alone a teenager should ever know.

Every memory where I was silenced, un-informed, violated, taken advantage of, and gaslit is like another handful of mud thrown at the wall. At 21 years old I have thrown enough mud to cover all the walls in my house; I have endured enough trauma to drown me.  

Fast forward six months to the Fall of 2018; due to the surgeon’s inability to thoroughly remove the disease, my body deteriorated rapidly as the disease spread. I mentioned my concerns to the same doctor about my ongoing and increasing symptoms but was met with surprise and dismissal. Despite my ongoing symptoms I wanted to maintain some sort of normalcy (and was led to believe from my doctors that I should be able to do so), and I proceeded to move twelve hours away and start my university career. Only three months into schooling I began to realize that I couldn’t control or dismiss reality. I was sick, very sick, and something was definitely wrong. By the time October rolled around I was at the doctor, ER, and hospital multiple times a week, dependant on opioids daily, three weeks behind in all my schoolwork, and would go days without food, because I was unable to climb stairs and experienced pain with everything I ate (I could only manage liquids & limited anti-inflammatory foods). I was nauseated and vomiting constantly due to my pain levels; experienced sciatic pain 24/7 throughout my sacrum, hips and down my legs; pain during urination and defecation; pain during ovulation and deathly pain during my cycle. Every day became more and more of a struggle as I watched myself fade away. 

Sitting on my bed bawling my eyes out in the fall, I remember saying to my Mom, “I can’t do this anymore, I’m done.” Bless her heart, she organized family members to come scoop me and my lifeless body up and brought me back to my hometown. I continued to decline and I was so angry this disease had already taken so much from me. 

Morphine became a good friend of mine, alongside ketorolac, THC/CBD, and any anti-nauseants I could get my hands on. Every day became a literal struggle to sleep, lay down, sit, and get out of bed. I lost all fat and muscle mass from my previously active body, over 30 lbs to be exact. I would look at myself in the mirror and see a shadow of who I was mentally and physically. I had become my disease and there was nothing I could do to stop it. 

Every week consisted of a flare up of a different quality and I was lucky if I got 1 day out of the month where I could actually leave the house and walk around. The ER trips were by far the worst so we always tried to avoid them if we could. 

The severe flare ups would hit like a freight train and every inch of my body would seize and cramp. I would vomit, defecate, and urinate all at the same time, sending my body into shock with agonizing pain. Despite prescriptions at home, we could never control these flare ups on our own because the medication wouldn’t stay in my stomach for long enough. I suffered as my Mom and support system sat beside me, helped me stand, and coaxed me to keep fighting. My life, the life I chose and created for myself, full of activity, love, vibrancy, hope and joy, had been stripped from me. I was left with nothing; without warning I was plummeting into a paralyzing darkness where no one could help me.

I vividly remember one trip into the ER in December. I was experiencing pain that left me unable to communicate or speak, so I just chose to look out the window of the car and wish that something would take me away from this world. Then the morphine would hit, and I would enter a different universe, a universe of relief but complete disconnect. The nurses knew me by name, and the doctors couldn’t believe that all this pain could be caused by endometriosis. “Humour us and please just go one more blood test, we can’t believe this is endometriosis” they would say. They assumed an 18 year old wanted to be in the ER, faking their pain, getting poked, bruised, traumatized, and begging for morphine. In reality, I felt deeply betrayed by the people who were supposed to be trained professionals. They knew nothing about me or my disease despite years of education. By January my arms were bruised top to bottom from constant IV’s and blood tests. The effects of a body that is exhausted from fighting for recognition and proper care. 

After four months of this disturbing routine, I finally told my Mom that I could not continue with this fight for much longer. Long story short, despite an emergent referral sent during the Fall of 2018 before I started University, I was told I would have to wait until the Fall of 2019 before I got an initial appointment with a Canadian specialist who could potentially address my condition. I couldn’t wait this long, so my family took a leap of faith and sent me outside of the country. 

Despite everyone believing this would finally cure me, I didn’t have hope that I would ever find my way out until I met Dr. Sinervo. I remember meeting this famous excision surgeon and crying when he asked, “how are you?” This was the first time a doctor asked me this question and truly meant it. The whole process was beautiful looking back because that was the point of convergence that shifted my life for the better, but in the moment it was absolute hell: another surgery.

Going into excision surgery in 2019 I was having overlapping anxiety attacks. My body didn’t want to have surgery again, I had just done this less than a year ago! Dr. Sinervo showed me photos of his dogs and put a smile on my face; I looked to my parents who finally had a glimmer of hope and decided to proceed with the surgery and fight for them.  At some point when you hit rock bottom, you can’t fight for yourself anymore because there’s nothing left to you, so you begin to fight for those around you. At that moment I chose to fight for my parents, so they could continue to have a daughter. 

During the surgery they found endo on my ovaries, fallopian tubes, uterus (back & front), cul-de-sac, bladder, and bowels. My appendix was removed due to extensive endometriosis and a presacral neurectomy was performed to diminish the pain I experienced with adenomyosis. The endometriosis had caused adhesions of my fallopian tube to sidewall, appendix to sidewall, and ovary to sidewall. My favorite explanation of an adhesion for those without endometriosis is: imagine your ovary or balls and then strap them to the side of your leg and try to walk around. Every step, stretch, breath and movement can cause sensation and pain at that area or surrounding area the adhesion affects. 

I woke up from surgery and as the night continued I experienced my third psychosis due to morphine. Psychosis was rare for me, but came with overwhelming and fragmenting sensations and memories. As my oxygen continued to drop due to the morphine I remember having a hallucination, I was talking to myself and coaxing myself to take medical devices off my body, such as oxygen. I woke up in a panic and said to my Mom, “I’m scared, something’s wrong.” The terrifying thing about psychosis is that you can’t tell reality from pretend. Fear is ever-present in your body, but you can’t connect to it. I couldn’t connect to any of my emotions and so I had no idea what I would be capable of doing in that moment. 

As my pain medication got sorted I began to experience the harsh effects of morphine and my family urged me to discontinue use. So, without a clear plan of action I went “cold-turkey” off of morphine. Unfortunately the withdrawal side effects were deadly. Running nose, sweating, headaches, extreme temperature fluctuations, fatigue, extreme anxiety, extreme paranoia, insomnia and much more filled my days for over a week until it finally wilted away. 

I am still terrified to touch morphine because if the disease didn’t kill me, morphine would’ve. My whole body craved it, and for months I contemplated killing myself because I couldn’t process the morbid emotions and experiences it caused me. This is the reality of an 18-year-old who is dismissed and unable to get proper care for endometriosis. This is the reality of someone who is following protocol in Canada, for treatment which simply involves palliative care with pharmaceutical medications. 

Now in 2021, two years after my excision surgery. I am the Co-Founder & President of the Endo Educational Organization of Canada and am choosing to believe that my experiences have a greater purpose. My journey is considered “rare” because I was diagnosed early and received a thorough excision surgery shortly after. So, with the blessing and curse that is my narrative, I chose to make a difference and involve myself in advocacy. Within my lifetime I want to ensure effective change surrounding endometriosis culture in Canada. 

To this day I still deal with PTSD, anxiety, depression, symptoms of adenomyosis, fatigue, deficiencies (iron), vulvodynia, and pelvic floor tension. Although with proper support and care I no longer have extreme pain every day, am able to consume a wider range of foods, my hormone levels are normalizing, my hair has grown back, I am gaining muscle and healthy weight every day, and I need less and less pain medication as my body continues to heal. It’s one thing to heal from a laparoscopic surgery, but it’s another ballgame to heal from surgery and trauma when your body becomes as deteriorated as mine did. I remember every muscle and joint being sore every day for eight months after excision because I was regaining my muscles to simply walk, stand, and move! At this time I am able to be a semi-functioning disabled young person which is a huge success for me! There are many factors of my life that continue to be affected by my experiences and current experiences, but I like to believe that the worst is behind me. 

My only hope is that this STOPS happening! I’m so defeated every time I hear another story of another individual in Canada who is having the same or similar experiences. Patients deserve better. Our concerns should be heard the first time, diagnosis surgeries should not be a fight to access, proper excision surgery shouldn’t be impossible to access (due to wait times & lack of proper education for our surgeons), and enthusiastic consent should be exercised as much as possible in order to curb the amount of trauma we experience. We deserve better and I am trying my hardest to advocate for better now. 

Story by Emma Weiland, Endo Educational Organization of Canada

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