Nothing Prepared Me for Life With Endometriosis

I was 12 years old when I woke up one Saturday morning laying in deep red blood on my hot pink bed sheets. I got up and went to the bathroom to discover I had just started my first period. “Welcome to womanhood, my love” my mom said from her bedroom jokingly. I wasn’t that phased; it was a part of life. I got up and started a shower, and the next thing I know, I’m on the bathroom floor coming too again as my mom tries to frantically wake me up after passing out while trying to get out of my shower.

Nothing could have prepared me for the way my life would drastically change forever from that Saturday morning as a 12-year-old girl.

Nobody had told me that every month in the days leading up to my period I would have pain that would stop me in my tracks and make my whole body freeze and tighten up out of nowhere. As if the pain was slowly suffocating me to the point where I had to hold my breath because each breath made the pain just travel further and further.

Nobody told me about the chronic fatigue I would feel that would put my life on hold because my body feels like it starts to shut down in this haze of exhaustion.

Nobody told me about the golf ball-sized blood clots I would pass each month, and how the heavy bleeding would always soak through every single pair of underwear I changed into, regardless of the pad I just changed not even 10 minutes ago.

Nobody told me I would have my head over the toilet being physically sick from the pain I’d endure for days on end each month.

But when I presented these symptoms (and more) that I was experiencing to my doctor, what they did tell me is that it was a “normal part” of being a girl. I was told to take some acetaminophen and I’d be “right” in no time. Each and every doctor I went to assured me I was fine and these things are normal.

Years passed, and I was still experiencing the same dreaded period pains. I also began to bleed and clot heavily out of my normal cycles and pain started to persist through the month, regardless if I was bleeding or not. I felt like I had no control over my body.

I was 18 when I finally heard the word endometriosis after being sent to a doctor first thing in the morning from my boss at work, as she could see I was unwell and “white as a ghost” as she put it.

The doctor referred me to a gynecologist who I met with and was soon put on a waiting list for a laparoscopic surgery to try and get some answers for my years of pain.

My one-hour scheduled diagnostic laparoscopy turned into a four-hour procedure where my surgeon found extensive endometriosis in my uterus, pouch of Douglas, bowel, and bladder, and it had damaged my uterosacral ligaments.

Nothing prepared me for the heart dropping, gut-wrenching feeling I would feel at my post op appointment where I was told at just 19 years of age that my chances of having children “naturally” were very limited. They said to act quickly if I wanted a chance to be a mother because of the extent of damage my endometriosis had caused in my reproductive organs.

Nothing could have prepared me for the side effects of the multiple drugs I would trial over the next 12 months to try and get some relief and manage this disease, and then the disappointment of them all failing.

Nothing could prepare me for the fact that at times, I would be labeled as a drug seeker by medical professionals when trying to get pain relief, despite my never-ending paper track record of endometriosis and everything that comes with it.

Nothing prepared me for the emotional and psychological toll endometriosis would take on my mental health. The toll it would take on my relationships both intimately and with friends and family. The fact that no matter how much I threw myself into my work that it would never be enough due to my endometriosis making me ill so often. It changed my own views of who I was as a person; I felt like my own body had failed me and broken me, along with my spirit.

Nothing prepared me for the words I would hear from my surgeon 18 months later at the hospital after my second laparoscopy where she said, “It has all grown back, there are new endometriosis lesions that have formed in the same places where I previously removed them, and then more too.”

This is life with endometriosis. There is no cure. This is just one story out of thousands of other stories of women just like myself. We go through surgery after surgery, in hopes to get some relief, in hopes to live pain-free, even if we know it may only be for a short period of time. We live with hope to fall pregnant and have the families we’ve always wanted, in hopes to live better quality lives.

End the delay in diagnosis. I am one in 10.