Studies show that 33% of women do not know what endometriosis is, 45% of women can not name any of its symptoms, and 74% of men have never heard of it. Known as the “Silent Epidemic”, endometriosis, or endo, it is a chronic, debilitating, and extremely painful disease where tissue that is similar to the inner lining of the uterus, forms adhesions and lesions outside of the uterine cavity. It mainly affects the ovaries, fallopian tubes, and the tissue lining the pelvis. In extreme cases, endometriosis can invade other vital organs such as the kidneys, eyes, liver, pancreas, brain, heart, and nasal cavity.
Endometriosis affects 1 million people in Canada, and approximately 1 in 10 women. Despite these elevated numbers, it can take a shocking 4-11 years for most women to receive an endometriosis diagnosis and as many as six out of ten cases remain undiagnosed.
Every woman has a unique story when it comes to their endometriosis journey and I wanted to share a little bit about mine.
In the eighth grade, I walked home from school one day and as soon as I arrived home, that’s when this excruciating pain formed in my lower stomach. The only way I can describe it is that it felt like a blowtorch in my stomach or 1000 little knives stabbing me continuously. My mom thought my appendix had burst and rushed me to the hospital. I arrived at the emergency room of Sick Kids hospital, had an IV inserted into my arm, and sat in the waiting room for a doctor. All of a sudden, the pain lightened a little bit. I went to the bathroom to discover that I had gotten my period for the first time. The doctor told me that because I had a cold, my cramps were heightened and that I should just take Advil if it happens again.
I had heard that cramps were painful, but I did not know they could be anything like this. I knew there must be something wrong because I had never heard anyone describe their menstrual pain with the same severity that I felt.
I wrote off the pain as bad cramps and continued on with my life. But the pain started occurring without rhyme or reason. It began to affect my life. Playing competitive sports was one of the things I enjoyed most. In grade eight, I played competitive hockey and soccer outside of school, and played on every school team that was offered. Cross country running for my school was my main focus, but every time I ran, no matter the time of the month, I felt like my stomach was being ripped open. I have a distinct memory of going for a run around my neighborhood and coming home and throwing up from pain over my porch railing into the garden. When I played hockey, I would have a garbage can ready in case I needed to throw up from the pain in between the first and second period.
Throughout all of this, I had undergone multiple MRI’s, but did not receive my results for over a year. My mom referred me to Tripod Fertility where I met with Dr. Dzineku and Dr. Roumain. After having an ultrasound and a sonogram, it was discovered that I had a 98% chance of endometriosis – only a biopsy could 100% confirm it. I had never heard the word “Endometriosis” before my diagnosis. I began to search up what endometriosis was on the internet and questions such as “can I have kids with endometriosis” and “will endometriosis affect your quality of life” frightened me. For the longest time, only my family and closest friends knew about my diagnosis. I did not know what this condition meant for my future. I did not know if I would struggle with infertility, and I still do not know.
Throughout high school, I would call my mom to pick me up from school because my stomach was in so much pain that I could not focus. Before playing any sport or doing any type of physical activity, I would make sure I had my prescription Naproxen in my bag. Even with birth control, where I skip the sugar pills to avoid menstrual cramps, and with my prescription medication, endometriosis is still debilitating.
In high school, Dr. Roumain invited my mom and me to a screening of Below the Belt, a documentary which follows four women as they urgently search for answers to their mysterious symptoms; symptoms of endometriosis we later find out. The documentary exposes widespread problems in our healthcare system that disproportionately affect women. My mom and I were both brought to tears. This incredibly moving film had a deep effect on me – seeing other women who understood the physical and mental pain of endometriosis and the unwavering courage they displayed while standing up for themselves.
I have learned to live with my disease. I take my birth control daily and I take my prescription pills when I need to. I control what I am able to control. I now know the triggers for my endometriosis – stress, alcohol, and lack of sleep.
I can tell when an endometriosis episode is about to come on because I feel a distinct twinge in my lower abdomen. In June of 2024, I went to the emergency room because the pain was so excruciating. I thought I might have a cyst on my ovary that had burst, a common side effect of endometriosis. Many women freeze their eggs and undergo surgery to try to remove the adhesions, but in most cases, this is just a bandage to try to cover the physical and mental burden of endometriosis.
But, there is a positive to my story! I have transformed my pain into a source of motivation and inspiration. Interning in the summers at Tripod Fertility and working for Fertility Friends Foundation all year-round is an incredible experience that brings me so much joy, and has intensified my aspirations to become a doctor, and maybe even specialize in fertility!
I share my story to create a circle of awareness. Up to 30% of women do not have any of the symptoms of endometriosis, called “silent endometriosis”, but are diagnosed when they have difficulties getting pregnant. On the other hand, many women have suffered with endometriosis their whole life. Endometriosis has historically been associated with downplaying of symptoms and shame, which I am optimistic will continue to change as endometriosis awareness and understanding grows in a global setting.
There is no definitive cause nor cure for endometriosis. It is a chronic disease that lasts a lifetime. The ultimate treatment is a hysterectomy – the removal of the uterus and ovaries, eliminating the endometriosis entirely, while also eliminating the chance of pregnancy.
I believe that one day research and medicine will discover a more definitive cure that does not involve the removal of a woman’s womb, and I hope to one day be a part of this process.
References:
https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656