Why We Should Be Talking More About Endometriosis
At one point in my life, I was experiencing constant, agonizing vaginal and bladder pain. It was a dull aching sensation that radiated from my groin throughout my entire mid-section, seemingly out of nowhere. It was so unbearable that I spent days indoors for fear of not being able to reach a bathroom or lie down. When it became clear that my pain wasn’t going anywhere, I scheduled an appointment with my OB-GYN, sure she would have a solution. Except that she didn’t. That’s when the ultrasounds started, and the visits to other specialists, until finally everyone gave up and wrote me prescription for Valium to reduce my pain, at the very least.
I later learned that my pain was a side effect of the hormonal birth control I had been taking for years, but before I figured this out, I found myself on an online forum dedicated to chronic vaginal pain run by the Endometriosis Association. Many of my symptoms were identical to those of endometriosis, and reading the personal struggles of women from all walks of life living with vaginal pain for years—or even their entire lives—was just enough for me to feel like I wasn’t alone in the struggle against pain that baffles modern doctors. I had heard the term endometriosis before, but didn’t understand the ramifications of the condition until I found this forum. Johns Hopkins estimates that 2-10% of American women of childbearing age in the United States are living with endometriosis. When I realized how many lives are affected by it and how unreliable the few treatment options available are, I was outraged that there wasn’t more awareness about the disease.
Endometriosis is a chronic disease that occurs when tissue lining the uterus (also known as the endometrium) is found outside of the uterus. It attaches to other reproductive structures like the ovaries or fallopian tubes, but it can also be found just about anywhere else in the body (though that’s less common). The uterine lining tissue sheds itself monthly, which is when a period occurs, but when this tissue does it’s job outside of the uterus it has no where to go, which leads to internal bleeding and inflammation—the cause of the chronic pain. Essentially, the menstrual cycle is happening in a place that it shouldn’t be.
There is no cure for endometriosis, but there are many treatment plans. Even the most extreme treatment options do not guarantee that the pain will be gone forever. Once someone is diagnosed with endometriosis (which involves surgery to officially diagnose) doctors may only treat the symptoms, while other doctors recommend hormone therapy or surgical removal of the growths to attack the source of the pain. Since the cause of endometriosis is unknown, there is no way to prevent new growth from occurring even if they are successfully removed. Some women will experience side effects from these methods that are even more painful than the disease itself, so choosing a method of treatment can be stressful and risky.
While I was not personally experiencing endometriosis, I felt very connected to the other women sharing their stories of vaginal pain. A common denominator between the testimonies I read and my own experience was that there was a feeling of doctors giving patients the runaround. Many women expressed frustration and anger that they were misdiagnosed so many times. Others just wanted a doctor with somewhat decent bedside manner because they encountered a doctor who thought their pain was purely psychological. My hope is that in years to come there will at least be a greater discussion about endometriosis in the medical community so that diagnosing endometriosis isn’t largely a guessing game.
