Few diseases fit the idea of journey quite as much as endometriosis. It takes an average of eight years to be diagnosed. For many, this feels like a lifetime.
I wasn’t what you call a sickly child, but I did struggle with anemia and low blood pressure. It all kicked up a gear — or two — after I got my first period. Some girls have an embarrassing experience, others are showered with gifts, some are barely given any explanations. Me? I ended up in the hospital for three days. I lost so much blood and was in such excruciating pain that my parents rushed me to the emergency room. Female relatives tried to comfort me, telling me I was officially “one of them.” Apparently, two of my six aunts had suffered the same traumatic entrance into womanhood.
During my teens, my periods didn’t really get any easier. I remember lying in bed one summer afternoon, clutching my sheets with my fists, twisting in pain. I heard my parents nearby murmuring, “This isn’t right.”
In adulthood, I braved my yearly gynecological exams, asking about the whole range of uncomfortable symptoms I suffered. Several gynecologists told me stress was the culprit. One specialist said I had polycystic ovaries, while another vehemently denied this. Two doctors told me it was all in my head.
It was only after I spoke to a close friend that I received some proper guidance. As I enumerated symptoms and explained the suffering I had endured for years, she finally concluded: “Sounds like you have what I have — endometriosis.”
Once more, I dragged myself to my GP and said, “Something isn’t right.” After several scans and blood tests, a doctor finally performed the laparoscopy that confirmed my friend’s spontaneous diagnosis.
My endometriosis is a sneaky one. It tricks me into believing I’m a perfectly healthy woman, capable of walking my dogs, running or teaching yoga. Most of the time I am chronically exhausted, fighting through mood swings and agonizing pains. My inability to get pregnant takes me back to my parents’ reflexion that something just isn’t right with me now, nor was it back then.
It took me more than 18 years to realize I was chronically ill, an endo-warrior, another spoonie.
My journey may be my own, but it’s not unique.
Ask a woman about her endometriosis and she will list doctors, years of accepting certain levels of pain as normal, and the complicated misdiagnoses.
I never thought my chronic illness would give me a column, but I am ready to share my experience. The more we share our own journeys, the easier it will be for the women who follow to reach a diagnosis faster and receive effective treatment.
Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.