What are your endometriosis symptoms like? Endometriosis is a thief. It has stolen my hope, my drive and a lot of days, my sanity. The chronic, relentless, wide-spread pain robs me of not only experiences, happy memories, motivation to aim big, and normalcy. My suffering robs me of entire days. I ache so deep inside it feels as if my bones are broken and the jagged pieces will soon stick out through my skin. My skin crawls and burns as if I have been dragged across a course wool carpet. My brain is foggy and frustrating. Simple tasks take longer because I can’t focus or remember. Every aspect of my life is affected (the way I dress, the way I eat, travel, drive, pack a purse, grocery shop, dress, plan a social event, work, see a new doctor.) Everything. My belly swells and is so tender I can’t even stand a pair of tight pants or the feeling of wearing a bra. It often feels like my ribs are connected to my pelvis with elastics made of barbed wire and every deep breath or slight movement tears through my muscles and burned my bones. I suffer through intense, searing pelvic pain that will truly bring me to my knees. In fact I have a history of syncope, a vasovagal response which is terrifying when it happens. I suffer from relentless nausea, and horrible migraines. I need to know where the washroom is every where I go because I always need to go and I have urgent, painful bowel movements all day long. Some days it hurts to release my bladder too. I am extremely fatigued, no matter how much sleep I get.
What was your journey to diagnosis like? I can’t remember a time in my life when I didn’t suffer from pain of some sort. I have vivid memories of waking in the night as child in my bunk beds screaming out in terrible pain. When I began menstruating things became so much worse. I have been actively fighting for proper care for more than half my life. 16 years of doctors visits, ER trips, specialist after specialist. Medication after medication. At 16, the pain in my right side became so unbearable, I was missing weeks of school because of it. After going to my family doctor regularly with the same concerns for more than a year, I was finally sent for an ultrasound which showed an 8cm cyst on my right ovary. It was during my first laparoscopic endoscopy that I was diagnosed with endometriosis.