An endometriosis journey can be described as trailing down a long dark road without any maps, tools, or light to help guide the way. A journey without being understood or heard. At least, that has been my experience.
A little background on endometriosis
Endometriosis is characterized as a chronic pain and inflammatory disease in which endometrial cells and tissue grow outside the uterus.4 These endometrial cells can run rampant in the body, migrating and latching onto nerves and ligaments. The closer a woman gets to her menstrual cycle, the worst the symptoms tend to get. I am one of many women that manage endometriosis symptoms every single day, 365 days a year. Due to the progression of the condition, endometrial cells have now been found on every organ of the body, including the brain.5 Nearly 200 million women worldwide endure the condition. Though the disease is common, Endometriosis continues to be underfunded and under-researched. As a result, those that suffer are perpetually misdiagnosed by medical professionals. Research demonstrates that the condition takes between 8 and 12 years to be diagnosed.2 My diagnosis of endometriosis took over two decades. Over two decades of questions about my body with no answers or solutions from doctors.
My endometriosis journey
My pain and health sciences background motivated me to acquire research about my symptoms. The research led me to endometriosis. When the words “I believe I have endometriosis” left my mouth, I was recovering from another ovarian cyst rupture. Accessing health care during the pandemic was challenging but I finally received a diagnosis of endometriosis. I learned quickly that a woman with endometriosis is just as invisible as she was before her diagnosis. Medical professionals provided no answers so I turned to the stories of survivors.
Stories of survivors
These stories became my lifeline through the pain and helplessness. I noticed common threads throughout each of them and stories overlapped with my experience. One common thread was the medical dialogue. Medical professionals have told me the following statements repeatedly: “You just have bad periods. There is no source to your pain. The pain is in your head. Women just have to deal with this.” On the one hand, the survivor stories provided relief. I was relieved to read that other women shared my experience. On the other hand, the stories revealed how these invalidating statements made by doctors prolonged their diagnosis of endometriosis.
The hindrance of processing women's health
All of us that endure this condition are tired of the same nonsensical dialogue thrown around by medical professionals; it is hindering the progress of women’s health. The urge to point fingers at those wearing white coats during our appointments can be strong but due to the lack of research, doctors are simply uneducated on the debilitating disease. The gap in education has bred generations upon generations of doctors unable to properly diagnose, adequately treat, or provide medications that are effective for endometriosis. In turn, quality of life appears to fall down the rabbit hole for these women; the physical, psychological, social, educational, vocational, and economic implications of endometriosis can bear a heavy burden.3 I know this first hand. Beyond the lack of research, complacency has built a home within the medical arena when it comes to women’s health.
Believe my and others pain
Gender and racial disparities within healthcare impact whether a diagnosis is provided and how pain is perceived by medical professionals.6 Chronic pain experienced by women and people of color is constantly trivialized and dismissed. Gynecologists never seemed to be concerned by the level of pain I reported. A nurse practitioner accused me of drug-seeking during an emergency room visit though I had clearly indicated no interest in opiates or any related drug during admittance. A doctor belittled my endometriosis diagnosis. The list goes on. I do not have the privilege to push endometriosis aside like the medical community. I am reminded by the symptoms I experience; they include: dysmenorrhea, menorrhagia, chronic ovarian cysts and ruptures, inflammation (hips, lower back, pelvis, leg), sharp/dull pain, nausea, vomiting, feeling of a full abdomen, decreased appetite, pressure to urinate, pain while urinating, pain before/during/after bowels, pain during/after sexual intercourse, fever, chills, insomnia/painsomnia, chronic fatigue, feeling faint or fainting, foggy brain, and memory difficulties. These are the symptoms I live with. I muster all the courage I have to attend another doctor’s appointment. Something is ethically wrong when your initial thought before an appointment is “Will the fact that I’m a woman, a Puerto Rican, or both dictate whether my symptoms are taken seriously?”
An endometriosis journey of being unheard does not work for me. It does not work for my fellow survivors either. Endometriosis needs to be addressed. Research needs to be funded. And a complacent health care system that allows gender and racial disparities to persist needs to change.
Have you ever experienced a "weird" symptom and wondered if it was endo related?