“My diagnosis wasnt a death sentence, but it felt like one.
I was in constant, agonizing pain, and the treatments still werent helping.”
I was in a dusty dorm room hallway when Tori told me.
Stage IIIC, she said into the phone in an eerily calm way.
We shared many of the same symptoms bloating, pain, excessive cramping, problems eating and irregular periods.
I was scared that this fate would also be my own.
Tori had gone to the doctor about her symptoms months earlier.
She actually went to see two different ones.
The first one told her it was IBS, irritable bowel syndrome.
He did no tests, blood or otherwise, and didnt scan her.
The next doctor told her it was intestinal fissures and kidney stones.
Those answers werent what wed hoped theyd be.
To say the least.
And neither were mine, although not nearly to the same magnitude.
Itsinterstitial cystitis, the nurse practitioner declared during my visit to address my symptoms.
We wouldnt I despised her.
She was rigid, factual, and the opposite of comforting.
Its bladder disease no one knows what causes it, she said.
Youll have to change your diet and we can do bladder infusions, she added offhandedly.
Was she chewing gum?
When will it go away?
I asked timidly, clutching my paper gown to my chest.
Oh, it wont.
Matter-of-factly, she scrawled something on a clipboard.
This is a lifelong disease.
I wept all the way home.
Soon after, I began my treatments, which were unpleasant, to say the least.
I altered my diet to the bland, flavorless slop that IC-ers were permitted.
No tomatoes, no acids, no coffees, no lemons.
I began getting infusions of lidocaine and anti-inflammatories directly into my bladder.
The pain was unbelievable, and I left each session shaking.
And yet my symptoms remained.
If anything, they worsened.
I was desperate and stuck.
As I trudged through my bladder treatments, Tori began chemo and radiation.
Her hair fell out, and she purchased some beautiful redheaded wigs that flattered her pale skin.
She was filled with it, too.
Her surgeries were intense and painful, and the chemo took a toll on her vitality.
We joked that we felt like old ladies.
One day, we sat in her apartment looking out the window.
I was hunched over in pain, and she was weak from her treatments.
I cant even remember what it was like to stroll like that, Tori said.
My diagnosis wasnt a death sentence, but it felt like one.
I was in constant, agonizing pain, and the treatments still werent helping.
As it turns out, this is because I did not have interstitial cystitis.
So how did I come to this conclusion?
Endometriosis can only be diagnosed through exploratory surgery, and I agreed to the procedure.
I started physical therapy, which I continued to do for four years after my first surgery.
It was a godsend.
However long it took, I was determined to continue my sessions.
I got to a place where I was certain that, in time, I would recover.
I would move on.
I would thrive in my career.
I would meet someone, and I would have a life.
Tori passed away in June of 2017.
She was 27 years old.
I had seen her two months prior.
When it comes to many health issues,women are much more likely to be misdiagnosed than men.
Ovarian CancerAwareness Month is September, but I want women (and men and people of all genders!)
If you arent happy with the way your symptoms are being regarded or treated, seek a second opinion.
It could secure your life.
I wish Tori had had the opportunity to live her life no matter how it might have turned out.
She was smart, she was driven, and she had hopes and dreams.
After Tori died, the urge to text her didnt subside.
At her funeral, her ex-husband arrived looking gaunt, and he sobbed in the back of the church.
I sent the message anyway.
Sophia Harris is a writer and content creator based in the Midwest.
Shes passionate about healthy living, environmental and agricultural issues, storytelling, and greyhound rescue.
She emotionally supports her greyhound Billie in the Indianapolis area.
Her passion is leaving parties before 9 p.m., and her worst fear is Trader Joes on a Sunday.
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