Everything is stuck together: An Endo Story

My name is Fela, I'm an artist and writer living in Chicago, IL. Like many other women with Endometriosis, I thought my pain was normal. When I started my period at age 11, I not only had crippling pain but I bled a terrifying amount. All of this continued into my teens and when it was time to see an OBGYN for the first time, they told me it was completely normal. I remember one at Planned Parenthood saying, "Some women have hardly any pain and some women have lots of pain, that's just how it goes."

I continued on trying to live my life even though each month I'd spend a week in bed, glued to a heating pad, and hoping I wasn't taking more than the suggested amount of Ibuprofen. Then when I was 22 my pain stopped being just a crippling week long period issue and became an everyday issue. After a trip to the ER, they found an Endometrioma cyst and said I should talk to an OBGYN about the possibility of Endometriosis. I was very fortunate that the next few steps only took 3 months, because I know for so many it can take so long for doctors to believe their pain. After my first surgery the surgeon told my best friend in the waiting room, "She has stage 4 Endometriosis. Her organs are all connected in a ball and I can't separate them."

Since that day I've had six surgeries, a bowel resection to separate my bowel and uterus, an ovarian suspension to put my ovaries back in place, a hysterectomy to remove my uterus and cervix, thoracoscopy to remove Endometriosis off of my diaphragm, and many other procedures. There has been endo on my uterus, bowels, bladder, ureters, diaphragm, ovaries, and the wall of my abdomen. I have had a ton of success and a ton of failure. In having a hysterectomy, I cured my Adenomyosis, but it in no way guaranteed pain relief and it sure as hell is not a cure.

In these 3 years, I have learned more than I could imagine about my body and what my mind is capable of. I've had to mourn the woman I was before and learn to love and accept the one I have become. On top of that, being sick is exhausting. It's a non stop job with hardly any time off and there's definitely no holiday bonuses. But in some sort of crazy way, it can be really beautiful to experience joy the way we do. You know when you finally get to go outside and sit in the sun after days in bed during a flare? When you can close your eyes and feel the heat hit on your eyelids and the wind across your cheeks? That feeling right there. I hold onto that feeling as much as I can, because no matter what pain we endure, that will always be there waiting for us.