By Alex Marie
It took me fourteen years to be diagnosed with endometriosis, and my pain and my healthcare needs are still not taken seriously today. Endometriosis is a chronic disease that is extremely underdiagnosed or is diagnosed many years after symptoms have begun, causing impacted individuals to endure years of suffering through severe and sometimes debilitating pain along with many other side effects. While there is a general lack of awareness around endometriosis, it impacts approximately one in ten individuals and can impact all genders.
Throughout the fourteen years I was waiting for a diagnosis, I was repeatedly questioned, dismissed, and silenced by nurses, doctors, and specialists. I found I was consistently asking myself “why will no one believe me?” and almost started to doubt my own pain even though it was ruling my life. I was constantly missing days of school because I was physically unable to get out of bed. When I began working, I had to meet with various managers to discuss their concerns over the amount of sick days I was taking each month. My education and finances suffered in addition to my physical and mental health. Countless doctors told me that I was “just stressed” or recommended simple solutions including that I should “just drink more water”. No one seemed interested in working with me to figure out what was really going on. On one occasion, my mom called an ambulance to bring me to the hospital, and when the paramedics arrived, they questioned her in front of me asking if I was a dramatic child who may be making up my pain for attention.
Other than having a medical name to explain my pain to people, my situation did not improve after my diagnosis. I still felt as though my condition was not taken seriously and I was treated as though I was not capable of making decisions about my own body. On multiple occasions, specialists would not consider treatments outside of prescribed pain medications because of my age and gender. One specialist told me: “I’m hesitant to move forward with any procedures that could impact your fertility; your future husband may want biological children.” I explained countless times that I do not ever intend to have biological children, and that as someone who was adopted, I had firsthand knowledge and experience with alternative family structures if I ever decided I wanted children in the future. Every single time, this was completely dismissed with comments including “you may change your mind one day” or that I should wait until I had a husband to help me make that decision. My experience throughout this process was made even more frustrating as a member of the LGBTQ+ community. Even after I informed healthcare professionals that I was a lesbian and would not have a husband one day, many would continue to dismiss my requests for more intensive treatment that could impact fertility for the sake of my future husband and his potential desire for biological children.
For years, and to this day, I have been made to feel as though my health and well-being, surrounding a chronic condition that impacts my daily life, did not matter because of my age and gender. The possible desires of my nonexistent future husband have been held in higher regard than my own daily pain and suffering. Chronic conditions such as endometriosis are often not included in reproductive health advocacy conversations; especially the additional barriers various individuals may experience seeking out treatments based on their intersecting identities. While we have a long way to go and many changes to make for reproductive justice, organizations including Woman Deliver have created several global calls specific to endometriosis. These include:
- “Provide menstrual health and comprehensive sexuality education programs in schools;
- Carry out information campaigns on the social and economic impacts of endometriosis;
- Educate and train the medical community to ensure early detection and adequate treatment; and,
- Integrate endometriosis into reproductive, maternal, neonatal, infant and adolescent health policies and programs.”
No person should have the experience that I, and far too many others, have had when advocating for their own health. We have a right to make our own decisions about our own bodies. One’s individual experience of pain should not be minimized due to the bias or potential desires of another party.
Alex is an LGBTQ+ and disability rights activist from Winnipeg, Manitoba. They are currently pursuing their Master of Arts, with a research focus on protections for the LGBTQ+ community.