It’s time for another instalment into The Endo Project, this time featuring Alix and her story and experience with Endometriosis.

Before we continue, I wanted to mention that submissions for the project are open to everyone, no matter where you are located! I understand travelling to Kingston may not be possible and that is totally fine – your story is still VERY important and I’d be honoured to share it alongside everyone else that has submitted as well.

To submit your own story, click HERE or email info@jackiehallphoto.com if you’d like to participate 🙂 And you can find more into about The Endo Project by clicking HERE.

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And now, here is Alix and her experience so far:

“I have lived with symptoms of endometriosis since I was around eleven years old, long before I was ever diagnosed. What started as painful periods gradually became something that affected every part of my life. I missed school when I was younger, and as I got older, I pushed myself through work and daily responsibilities while managing pain that was often invisible to others.

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.

From the beginning, my cramps were severe and overwhelming. My bleeding would start and quickly progress to extremely heavy bleeding with large pieces of lining being shed within an hour. The pain and bleeding together made me intensely nauseous — often to the point where I couldn’t even keep water down.

I lived like this through my teens and into my early twenties. When I was around twenty, I went to a doctor and was prescribed birth control to see if it would help. It did help manage my symptoms for a long time, and I thought I had finally found some relief.

Years later, I began experiencing a different kind of severe pain, which turned out to be gallstones. I required emergency surgery to have my gallbladder removed. During that surgery, the surgeon told me I shouldn’t be in that much pain and decided to look around. That’s when he found endometriosis. He didn’t remove it, but told me it was “minor” and that if it ever started bothering me, I should talk to an OB. At the time, I had never even heard of endometriosis.

When my symptoms began worsening again about three years ago, I returned to doctors for help. Despite already having a surgical diagnosis, I’ve had a very difficult time getting my family physicians and OB to truly listen. I’ve undergone many tests that didn’t lead anywhere — often repeatedly checking things like my thyroid — before doctors eventually agree it may be hormonal. My birth control has been switched multiple times, and I am now on dienogest, a medication specifically for endometriosis. Despite this, my symptoms have continued to worsen. My OB has acknowledged that this is unusual, but there has been little clarity or direction beyond that.

I lived with symptoms for almost 15 years before endometriosis was discovered, and even then, the diagnosis was incidental — found during an unrelated emergency surgery rather than because my symptoms were properly investigated. While I technically received a diagnosis at that time, 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.

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.

Trust your body. If something feels wrong, it probably is. Pain that interferes with daily life is not normal, no matter how often you are told otherwise.

Document your symptoms, advocate for yourself, and seek out providers who are knowledgeable about endometriosis. If you feel dismissed, keep pushing for answers. You are not weak, dramatic, or exaggerating — and you deserve care that takes your pain seriously.”

Thank you so much Alix! Your story, experience, and advice is so appreciated!