My history with endometriosis is extensive. I began having symptoms at age eleven then they escalated at age fifteen. At age twenty and twenty-one I lost two pregnancies at six and seven months, respectively. My son, who was born first, lived for two hours. My daughter died from a severe gash to the neck from a speculum exam done in the ED. I was in labor with both of them for over forty-eight hours and required surgery after their births to stop the bleeding. I was told I had a son by the nurse and not allowed to see him at all. It wasn’t until I went to nursing school and talked with an instructor that she helped me uncover the truth. Prior to that, I had two miscarriages and a forced termination because my kidneys were failing. I have been told that all of this was due to complications of endometriosis, even though I was not clinically diagnosed until five years later, which was eleven years after the onset of symptoms.
At age twenty-two I began having symptoms of PCOS and suffered the loss of one tube and ovary from rupture after spending two weeks in the hospital in severe pain. I was diagnosed with everything from depression and anxiety to a stomach ulcer before being rushed into surgery when my blood count finally plummeted. After suffering for months with cysts on the other side, but hoping to be pregnant, I went for an ultrasound and was shocked to learn that I had a tubal pregnancy and a ruptured ovarian cyst at the same time. I could barely walk, but I was told to go home and return in the morning for emergent surgery. Left with only my uterus and a shattered will to live, I returned home to face the fact that I would not have children. A few months later and I was back in the office in severe pain. The ultrasound showed a fibroid cyst which was very, very large. My doctor referred to it as the size of an orange or small grapefruit. After a month and no relief, he told me that my only option was to remove my uterus. At age twenty-six I underwent the final stage of a complete hysterectomy and placed on estrogen replacement therapy. I was told that I had severe, stage 4 endometriosis.
Between then and now, I have endured more than seventy procedures, with over fifty-five being invasive surgeries of the pelvic organs. I now suffer from severely painful adhesion disease, as well as fibromyalgia which I am told is due to the repeated surgeries. My former PCP told me that if in fact, I had fibro, it meant that “you are crazy”. The last surgery performed in June 2015 was my 55th surgery shortly after my 55th birthday, was certainly even more invasive than any prior to it. But it was excision surgery, which is now considered the gold standard for removing endometriosis. It is still not a cure for the pain I endure. We need more research, more testing and a better way to recognize it in young girls so that early intervention can possibly preserve their fertility and quality of life. Noone should have to be dependent on painkillers to live or count their “good days” as ones where an ER is not involved or going to work is a luxury.
Never let anyone tell you that your pain is not real, or that a hysterectomy or becoming pregnant will cure you. Endometriosis is real and it can affect all of your body systems.
I wish you all well.
XO
Virginia HOPE 