Endometriosis is a chronic disease that causes severe pain and infertility, along with numerous other symptoms. The disease causes endometrium-like tissue to grow outside the uterus. There is currently no known cause of endometriosis and no cure.
When I think about my endometriosis journey, I often think of the lyrics, “I guess a lesser woman would’ve lost hope/ a greater woman wouldn’t beg/ but I looked to the sky and said/ ‘please/ I’ve been on my knees/ change the prophecy,’” written by Taylor Swift, a famous female pop star. Endometriosis impacts 10% of reproductive-aged women. Historically, endometriosis has been thought of as the woman’s fault. I feel connected to the generations of women before me who have suffered in pain and shame from this disease.
Period pain, in general, is stigmatized and not taken seriously. Even now, it is common for women to feel like they need to try to endure the pain without taking pain medication. It feels weak to have to take pain medication and I know many feel the same way. This is a sentiment that I hope to see shift. You are not a greater woman for not asking for help.
In recent years, there has been more awareness and advocacy for endometriosis research and improved treatments. At the same time, little progress has been made. My mom was diagnosed with endometriosis about 30 years before me. The treatment options then and now are incredibly similar. It is disheartening to see how little progress we have made towards giving women comprehensive medical care.
One solution presented to 17-year-old me was to get pregnant.
This “treatment option” is common today and showcases the archaic state of women’s health.
In 2013, a medical study was conducted that evaluated the physical attractiveness in women with and without endometriosis. This paper has since been retracted. Many women were outraged that time and money were spent on evaluating the attractiveness of women with an incurable disease. Women experience crippling pain from this disease. This medical study demonstrates how women’s pain is written off and dismissed.
With little support from the medical field, many women turn to each other. I have connected with many women to help guide me on my endometriosis journey and have now offered support to friends starting on their journey. My support system emphasized to me that my pain was real and serious. The validation of getting a diagnosis and being told your pain is real is unmatched.
There are incredible doctors who are working toward a better future of women’s health and endometriosis care. My surgeon was the kindest and most supportive doctor I have met. My last memory before going into surgery was her stroking my arm and comforting me. I applaud these professionals for fighting for more research, resources and care for their patients.
In advocating for my pain to be taken seriously, I constantly have to remind myself not to lose hope. While I do not think comparing myself to other women is a great idea, I find comfort in the lyrics from “The Prophecy.” The lyrics provide me with solace because I know so many other women have been through this. It feels like an invisible support system. Swift connects herself to this sisterhood by acknowledging her own begging for help with her struggles. While “The Prophecy” is not written about endometriosis, it perfectly encapsulates my feelings towards the disease.
The question of “Why?” and specifically “Why me?” circles my head constantly. Who decided for me to have this disease? What can I do to cure myself? Swift’s lyrics acknowledge that there is nothing wrong with begging for your life to change. Life’s struggles do not all have to be carried gracefully.
Change comes in many forms. Change can be systemic, like having better treatment, or individual, like feeling better. I hope the prophecy changes in endometriosis care. By writing this one article, I aim to start changing the prophecy.