Ready to Rant: I Was Diagnosed With Thoracic and Abdominopelvic Endometriosis

After spending countless years scouring the internet, pleading for answers, and reading dissertations and blog posts written by other women who are suffering from the same symptoms–I finally found a bit of relief. On June 19, 2019, I was diagnosed with Thoracic and Abdominopelvic Endometriosis by the best-specialized Endometriosis surgeon in the world, Camran Nezhat at the Nezhat Institute in Palo Alto, California.

I have never met such a genuinely down-to-earth professional.

Dr. Nezhat moved from Iran to exercise his passion for helping women after taking care of his mother until she passed.

Thanks to him, I was finally validated and heard. 

I had an overgrowth of tissue completely covering my uterus (95 percent, to be exact) with no ability to have children…ever. Imagine getting that news. It spread to my colon, bladder, and my liver. It made its way to my right lung, which has caused thoracic pain starting from the occipital bone, down the clavicle, arms, shoulders, and down to my hip and sometimes my toes.

I’ve dealt with female issues since coming out of the womb.

My periods have always been painful, heavy, and miserable since I was 13. My symptoms varied from perpetual bloating, bladder, bacterial, yeast infections, the inability to hold my pee, stabbing pains in my uterus, abnormal feelings in my body, horrific constipation (I would shit twice per week, no joke), lethargy — I ALWAYS knew something was off.

I’ve been dismissed and ignored by the staff in the ER, doctors, friends, ex-boyfriends, and even family members. My ex-best friend actually said: “I think you’re making it up in your head…why are you so obsessive about this?”

I began to think: “Fuck, I might be a hypochondriac!”

Whenever I went to the ER, it was because I felt like my right lung was going to explode and implode at the same time. And what did I get? General bloodwork, medication to knock me out (and shut me up), and a straight out “No” to my request for an ultrasound.

I would spend hours waiting for my bloodwork results while the nurses just walked around talking about their upcoming weekend plans and what was going on in their social lives. I’d then be sent off with some ibuprofen. (I was discriminated against whenever I asked for something stronger. They treated me like I was a drug-seeking narcotic-abuser.) 

I have seen naturopathic doctors and tried holistic methods, like Ayurveda and Chinese herbs. Believe me, Western medicine was the last thing I wanted.

I suffered, but no one cared. No one would listen.

Oh, well you could have [insert dumb ass response or tone-deaf advice here.] I would LOVE to have a little test round to see how many of the invalidators in my life would be able to handle an unstable bladder, and juggling numerous infections all the while carrying around five pounds of shit because their colon is blocked with tissue and unable to process the toxins out of their body.

I felt like absolute death every day. I was unable to do anything physical; I couldn’t even walk or breathe — like ever. I didn’t have the words to express the stabbing pain I was in because absolutely no one could comprehend it. I felt like my spinal cord was about to snap…like my organs were going to explode. 

The incompetency of healthcare today is just baffling to me.

My grandmother (who was a nurse in the ’ ’60s-’80s) knew what my disease was! Although she didn’t know the magnitude of it, she was still aware that it can spread. THIS was the last generation of quality healthcare . Back then, they were  focused on healing the patient from within. Instead of masking the pain with medication and rushing them out the door.

One Endometriosis specialist had the nerve to suggest early menopause—I was 26 years old.

I’ve always pushed through, day in and day out. Regardless of Endometriosis slowly growing its ugly self inside me. I’ve always been so outdoorsy, too. I participated in varsity pole vaulting from 2007–2011, hiked five miles a day, swam, and ran…until I was completely robbed of my human body.

January 2017 is when things started spiraling out of control. (I didn’t have a period between March and August 2017.)

I have so much damn appreciation and gratitude for my husband Cody. He’s been there for me the entire time. (Even when my silent, chronic disease reared its ugly head.) 2017 to now, this man has been there—through nights of me screaming in pain, ER visits, hysterical moments that I thought would never stop. 

And yet, I’ve still somehow managed to build two businesses, go to school full-time (I’m pursuing my masters), I’m teaching myself to play piano, I’ve been writing and I’ve had articles and poems published, and I skateboard (whenever I can get out of bed—which is usually three days per month).

I want to encourage those who are out there living without Endometriosis to show nothing but kindness for all of humanity because there are many different types of “invisible” illnesses and diseases lurking in others who look healthy. Educate and empower yourself. You never know who you could be hurting with your words. 

To my Endo friends, we’ve got this. One day at a time.