I am 1 in 10

I had no idea that periods were not supposed to be so painful that they kept you in bed for a day or two. I had no idea that it wasn't normal to be in pain every. Single. Day. I had no idea that it wasn't normal to constantly have to pee every 20 minutes even though I didn't have a UTI. I had no idea that it wasn't normal to never have the energy to do anything besides go to work and come home, and even that was a struggle sometimes. My heating pad was my best friend and our kitty would always come snuggle up with me when he new I was hurting.

Not until a trip to urgent care for unbelievable, debilitating pain. Like couldn't move, tried to get up to go to the bathroom and almost passed out, horrific pain, completely out of nowhere.

Urgent care sent me to the ER for a CT scan to check my appendix. Luckily, it ended up being a ruptured cyst instead of appendicitis. But that trip changed the course of my life. They gave me a preliminary diagnosis I had never heard of before.

Endometriosis.

Not only did I have a ruptured cyst on my right ovary, I also had a 3cm endometrioma on my left ovary. Actually a pretty small one but I was instructed to follow up with an OBGYN. Now, that was a whole new ballgame to me as I had never been to one.

The gynecologist did an ultrasound, told me that the ruptured cyst would resolve on its own, but I should follow up with his partner to discuss surgery, as he was getting ready to retire and didn't do it anymore.

This was a huge mental shift for me. I felt broken. I felt like my body had betrayed me. I wondered what I had done to deserve an illness like this. It was so much to try to process, I cried for days.

A couple days later I had an appointment with his partner. He didn't hear me out, he just pushed birth control in an attempt to smother the symptoms. I said no. Then I sought a second opinion, and a third, until I found a doctor that truly listened to me. Dr. Catherine Keefe at Saint Paul VI Institute in Omaha, NE gave me my life back. And all it took was 3 surgeries and a couple thousand dollars. No biggie. 😅

When I went in for the surgery to remove my endo, it was scheduled as 8.5 hours. It ended up taking 10.5 because the adhesions had spread so much in 3 months that it took an extra 2 hours to remove them all. (This was also right at the beginning of the pandemic and all the craziness that brought.) The reports blew my mind. My uterus and bladder were adhered together. My uterus, tubes, and ovaries were all adhered to my pelvic wall. There was endometrial tissue on my uterosacral ligaments, bowels, cervix, as well as bilateral endometriomas. At least that is how I remember it from almost 4 years ago. After all that, we still had no idea if I would ever be able to have kids or not. I consider my children to be one of my life's biggest blessings as I know many women with endo struggle with infertility.

After I recovered from my surgery (abdominal pains, shoulder pain from the gas, swelling, staph infection in one of my incisions) I felt like a whole new person. It wasn't until then that I knew that my pain hadn't been normal. Since then I have mostly been pain free but I know that it's only a matter of time before I have to go back for another surgery. This is not a one and done illness. Your chances of it growing back are high. This very well may be a life long, constant battle. And a journey of learning to love myself and my body again, with all my new battle scars.

The saving grace is that I know that I'm not alone. An estimated 1 in 10 women in the United States have endometriosis. Sometimes it can feel incredibly lonely and like no one understands. Facebook groups have proven to me that I am not alone and it is so reassuring to me knowing that there are other women out there that have gone through the exact suffering as I have. If you are a fellow endo warrior, know that you are not alone, and everything you go through will help make you stronger.