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"We aren’t lazy. We aren’t being dramatic. This is real. Just because we don’t look sick on the outside, doesn’t mean we aren’t going through hell on the inside."

ELIZABETH

Sharing her Story

I remember clear as day my first period at the age of 13. I remember experiencing so much pain and blood loss that I was convinced I was dying. Every month was hell. So many days missed from school because I couldn’t get out of bed due to the pain. Yet apparently this was normal and I’m just a “drama queen.”

I’ve always been a motivated person so to be called lazy because the pain and fatigue some days is too much really hurts. I kept thinking to myself, this cant be normal. I’m very lucky to have my mother, who sadly also suffered, needing an emergency hysterectomy at the age of 29. She was my biggest advocate, but sadly it was never enough to be heard. At the age of 21 I was in my 3rd year of nursing school, and the excruciating pain and fatigue became a daily thing. I went to emerge 6 times because I couldn’t function only to be told each time that it’s all in my head because all my tests came back normal. They tried to tell me I needed a psychologist. I was bed bound, unable to move, passing out from the pain when a very smart resident came into see me. He asked if I had heard of endometriosis and that he thinks I might be suffering with it. 2 weeks later I was in for surgery. Waking up from surgery, I remember breaking down in tears when they told me I have endometriosis. See, I wasn’t going crazy I thought to myself. I knew this wasn’t normal. Even after surgeries and hormonal treatments I wish I could say it’s been smooth sailing.

A year after my diagnosis I went through a really dark period turning to food and alcohol to numb the pain of my father's death. I became unhealthy, obese, and my endometriosis symptoms kept getting worse until I was bed bound again, unable to move, needing my second surgery. Doctors kept telling me I needed to get healthy but food and alcohol was the only way I knew how to cope. I had found the sports of powerlifting and strongman, and very quickly I was told that I was built for the sports and that I had great potential. I truly believe powerlifting saved my life. The further I got into it, the light bulb went off in that if I wanted to be the strongest I could possibly be, that everything matters including your lifestyle. The motivation for me to be the best athlete I could be managed to get me sober and healthy. After getting sober and cleaning up my diet, I noticed that my endometriosis symptoms were much more manageable. Not as crippling, but still present. Things were great for a couple of years, until the pain became unbearable again. This time, being the healthiest I had ever been, I was crippled over in pain, unable to lift and get my training in.

 

"While I technically received a diagnosis after emergency surgery, it did not lead to treatment, education, or meaningful support. It took many more years, and worsening symptoms, before Endometriosis was taken seriously as the cause of my ongoing pain."

ALIX

Sharing her Story

Over time, my symptoms became more complex and severe. I now live with chronic pelvic and abdominal pain, frequent abdominal swelling (“endo belly”), daily nausea, low back, hip, and leg pain, and nerve-type pain. My body is highly sensitive, and even gentle exercise, long workdays, or certain foods can trigger flares that last weeks.

Endometriosis has impacted my ability to move freely, sleep well, eat without fear of triggering symptoms, and feel safe in my own body. It has affected my career, my relationships, and my mental health. Much of my life has been shaped by managing pain, advocating for myself, and trying to be believed in a healthcare system that often minimizes this disease.

I wish more people understood that endometriosis is not “just bad periods.” It is a chronic, systemic disease that can affect the entire body — including the nervous system, digestive system, and mobility. Pain doesn’t always show up on scans or tests, and a “normal” result does not mean someone isn’t suffering.

I also wish people knew how isolating it can be to live with an invisible illness. Many of us look fine on the outside while managing severe pain, nausea, and fatigue. Being dismissed, told to push through, or made to feel like we are exaggerating is often as damaging as the physical symptoms themselves.
 

"I took me two decades to be diagnosed with Stage 4, I had no idea what Endometriosis was and had only heard the word. I had no idea it was going to change my life forever."

HEATHER

Sharing her Story

I’m more than Endo, even though it has changed me in ways I can’t even imagine myself. Four pelvic floor surgeries in 9 years, continuously living with uncertainty and wondering if I will ever feel better. Wondering will I be able to work today? Can I make it to the dinner on the weekend? 

It started to create a lot of anxiety around travel and leaving the house, never knowing when a flare up is going to happen. How bad is it going to be? What if people see me? I even stopped doing sleepovers at my besties house. The confidence I had was so slowly slipping away. I would only stay in a hotel room with my mom so people wouldn’t see how much pain and suffering I was in. I was always wondering: will I have children of my own one day?  

My last surgery was an 8 hour excision removal of endometriosis and full hysterectomy where all my organs were attached to each other, making me look 6 months pregnant. 8 months later, I’m battling another mental warfare of trying to figure out life without hormones and balance HRT. It is a whole new set of challenges that nobody prepares you for. Being medically put into menopause has been very difficult and when you look in the mirror, you don’t recognize yourself anymore. 
 

" I wish people understood how invisible and yet debilitating this disease is. You can look “fine” on the outside while feeling awful on the inside. We are still showing up, working, parenting, and functioning and that often makes it easy for others to underestimate what we’re dealing with."

KILEY

Sharing her Story

Living with endometriosis has shaped my life in ways most people never see. What started as painful, lengthy periods and painful intercourse, over the years became chronic pain, digestive issues that keep me uncomfortable much of the time and fearful of leaving the house, bloating, brain fog, flare-ups that can completely throw off my days and depression as a result of feeling completely depleted and hopeless. 
As a single mom, artist, and yoga teacher, I don’t really feel like I have the option to stop when I’m having flare ups, sometimes they last weeks. I still have kids to care for, classes to teach, work to do, and bills to pay , even when it feels like my body is working against me. I’ve tried to learn to function while being uncomfortable, exhausted, or in pain, rotating medications. 
 

For those selected to participate in the photoshoot/interview: 

- You'll be scheduled in for your photoshoot, along with your interview, to take place at my studio here in Kingston, Ontario

- Hair + makeup will be arranged for you and we'll discuss wardrobe to wear as well

- You'll receive 5 edited images from your session as a keepsake. 

- A model release must be signed as your images/story will be displayed + shared online, with the potential to be shared in a gallery setting as well once the project is complete. 

- For those that aren't selected for the photoshoot/interview, your story will still be encouraged to share. They will also be shared online and on this site, along with the potential to be shared in a gallery setting as well. You will need to grant permission to share.

* To participate in this project you do not need to pay for your session, it is done on a volunteer basis. 

* Any costs related to travel, milage, wardrobe costs, etc. are not a part of this project and are the responsibility of the participant.

DETAILS

The Endo Project Participant