To receive a diagnosis of Endometriosis took me eight years of persistently advocating for myself, starting from the age of 13. My periods were never normal, and I knew this from talking to my friends about their periods. Between the ages of 13 and 20, I saw six different general practitioners before one of them finally took my pelvic pain seriously, and they referred me to a gynecologist. I spent years being misdiagnosed, gaslighted, and ignored while trying to cope with severe symptoms of this disease.
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From age 14 to 21 I must have had weekly visits with my family doctor. He never sent me to any specialists, just tried different birth control pills because he kept telling me “all girls my age have cramps”. When I was 21 my appendix burst, and during the surgery, the general surgeon noted my abdomen had a lot of rogue blood in it, he called in an Gynecologist and it was then I received a diagnosis of Stage 4 Endometriosis.
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Endometriosis is debilitating. There are days I’m in so much pain that I can’t get out of bed. It is really hard to live your life when you are terrified the pain will come back unexpectedly..
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I knew the pain that came with my periods was not normal right off the bat. I would be the only one missing days of school, the only I knew who needed help walking to and from the bathroom just to painfully urinate. At 14 years old, I wouldn't know any better, but my mom did. She knew this wasn't normal. Appointment after Appointment with my pediatrician would leave me with the diagnosis of "this is how periods are, for some their more painful then others" or just straight "dysmenorrhea".
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I am constantly tired and in pain everyday, some days I find it hard to do anything, but because I have a child I force myself to get up— I fear my tiredness impacts my ability to do as much with her in a day. Because of where mine is located I have pain sitting in most positions for too long. I also have pain in my pelvis and back when my bladder is full. I constantly have cramping in my back, legs and pelvis
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When I am at my greatest pain it feels like my insides are being slowly ripped. I have stabbing pains in my pelvis. It hurts to do everything - go to the bathroom, have sex, walk around, I curl up some nights in the fetal position crying for hours contemplating whether I want to go to the ED again only to likely have my symptoms brushed off… I disguise it well because I have to but I often want to curl up in a hole somewhere. People can’t see the pain. They think I’m fine because I look fine but I am in agony
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I live with daily cramping, sometimes manageable, sometimes so bad I can't get out of bed. The pain radiates through my left side and down my back and leg. Gas pain brings me to my knees. I don't remember the last time I went a week without spotting or bleeding. I suffer from chronic fatigue and depression
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The pain and effects on my life triggered depression so in addition to having to deal with bad pain I had to deal with clinical depression. My sleep was affected because of the pain, my sex life, my family and friends life, everything. Since my surgery I feel much better and my depression and sleep have improved too. I could not even work and now, returning to work is something I am looking forward to.
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I suffered from painful periods my entire life, and when I was 27 I began to cry during a Pap smear and begged the student doctor to please help me. I was missing work and unable to function 2-3 days of the month because of the pain. Before that I had been told to take birth control, suck it up, pain is normal, use different positions when having sex.
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