I grew up in a family of doctors and yet I was shocked to learn I had endometriosis
The culture of silence in women’s health means endometriosis is still not well understood
This First Person article is the experience of Ana Pontes de Azevedo, a master's of science candidate studying at the University of Saskatchewan. For more information about CBC's First Person stories, please see the FAQ.
I vividly recall the days my older sisters got their first periods. For one, it was a celebratory affair in our home in Brazil — our extended family gathered, and champagne was poured as if they had reached a grand milestone.
That was not the case for me. When the day finally came where I got my period, I found myself standing in a school bathroom, staring at the unfamiliar sight in disbelief. My first thought was that it explained why I had been so irritated the day before, simply thinking I had premenstrual syndrome (PMS). I didn't realize my relationship with my period would not be cause for celebration, but the start of a tumultuous journey fraught with pain.
Endometriosis is a chronic and inflammatory illness in which cells similar to the lining of the uterus implant abnormally outside the uterus and form lesions, cysts and other growths. It's an illness that affects almost two million Canadians and millions more worldwide.
Ironically, I had never even heard of it until two years ago even though I grew up in a family of doctors and am a scientist myself. But I suppose that's what happens when there's a culture of keeping quiet around women's health.
Fierce and unpredictable pain and moods
From the start, my periods would come with unbearable pain and extreme mood swings. My family nicknamed me ocelot — like the small, fierce and unpredictable animal found in South America.
Once, during dinner many years ago, I broke down sobbing out of nowhere.
When my mother asked what was wrong, all I could think and say was, "I can't even stand myself."
But I didn't understand. I didn't know that normal periods don't make you faint from pain. That normal menstruation doesn't last for seven days with heavy bleeding. That normal women don't cycle between uncontrollable crying and bursts of anger within minutes. That normal doesn't mean suffering in silence.
When I entered adulthood, the symptoms changed. As I moved from Brazil to pursue my studies in Canada in 2019, I continued to have health issues. Severe migraines accompanied my periods. Pain flared during intercourse, making intimacy an ordeal rather than an experience of connection. I tried different contraceptive methods, but none provided relief — some even worsened my symptoms. I knew something was wrong, but I had no name for it.
Finally, a diagnosis
The pieces started to fall into place when my older sisters were both diagnosed with endometriosis. Given my family history and my checklist of symptoms, I knew it was only a matter of time before I, too, would have a similar diagnosis. Endometriosis is thought to have a 50 per cent genetic influence.
In May 2024, when I was back in Brazil for a holiday, I underwent a battery of tests. The results confirmed what I already suspected: I had multiple points of endometriosis.
Sitting in the doctor's office, I struggled to process the news. Words like infertility and surgery swirled around me. My mother and sister sat beside me, yet I had never felt so alone. Why did this diagnosis feel like this?
The answer became clear with time to me. Endometriosis is a woman's disease, one that is poorly researched and little discussed.
That loneliness wasn't just personal; it was systemic.
The aftermath
Receiving a chronic illness diagnosis wasn't easy. It led to moments of self-doubt, guilt and anger. "Why me?" I questioned. "Did I do something to deserve this?"
But with time, I found strength in my sister Victoria, a physician and relentless advocate for women's health. Through her, I learned:
- I am not alone.
- My endometriosis did not mean infertility or a death sentence.
- My pain is real, intense and deserves recognition.
- Endometriosis is a full-body disease, affecting everything from mental health to energy levels.
- Understanding my body is my greatest power.
Funny how life works. Ten years ago, I had so many unanswered questions about my body. Now, I have some of the answers— but they come with new uncertainties, new struggles.
Yet, I am grateful. Unlike many women who suffer in silence, I have the privilege of a diagnosis. But even more importantly, I had someone with a similar story to rely on and trust.
These days, I work hard as a master's student studying plant sciences at the University of Saskatchewan. If anything, I work harder than most because once a month, I have to struggle with pain that would put many in hospitals in five minutes.
I have to attend meetings, perform experiments, go to class and focus on maintaining my career goals, all while my vision goes red with bursts of pain. And no one knows.
But women's health shouldn't be a taboo topic. Women's struggles are not niche.
Getting an endometriosis diagnosis has helped me understand who I am not only as a sister, a daughter, a partner, but most importantly, as a woman.
It helped understand what my needs and wishes are. It helped me understand that I have a beautiful body that needs to be taken care of and trusted. And having this body and accepting it just as it is what gives me the courage to speak, and let others who have this same struggle know that they are not alone.
Do you have a compelling personal story that can bring understanding or help others? We want to hear from you. Email sask-first-person-grp@cbc.ca to learn more.
ABOUT THE AUTHOR
