My Friend And I Were Both Misdiagnosed. I Lived. She Didn’t.

"I sat through appointment after appointment, having my pain dismissed, being told I was 'depressed,' being told I had 'IBS,' just as they had told Tori."
"As I trudged through my bladder treatments, Tori began chemo and radiation."
"As I trudged through my bladder treatments, Tori began chemo and radiation."
Duane Osborn via Getty Images

I was in a dusty dorm room hallway when Tori told me.

“It’s cancer. Ovarian. Stage IIIC,” she said into the phone in an eerily calm way. Actually, calm is what she would remain over the next 1½ years of her cancer battle ― the opposite of my assumed reaction to such a diagnosis, which would be abject panic.

Selfishly, when my heart dropped to the floor, it wasn’t just for her: It was for me, too, because I had been struggling with my health for a long time as well. 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 didn’t scan her. If he had, he would have seen the mass of tumors nesting on her ovaries, and, though I have no evidence to prove this, I believe if action had been taken during those crucial months, it could have saved her life, or at least prolonged it.

The next doctor told her it was “intestinal fissures” and “kidney stones.” Still, no one took the time to test or scan Tori ― they just gave her some antibiotics and sent her on her way. She didn’t get some actual answers until a romantic date with her boyfriend ended in disaster when Tori collapsed on a bathroom floor and was rushed to the emergency room.

Those answers weren’t what we’d hoped they’d be. To say the least.

And neither were mine, although not nearly to the same magnitude.

“It’s interstitial cystitis,” the nurse practitioner declared during my visit to address my symptoms. When I met her I discovered we shared the same last name, and I wondered if that meant we would have some sort of kinship. We wouldn’t ― I despised her. She was rigid, factual, and the opposite of comforting.

“It’s bladder disease ― no one knows what causes it,” she said. “You’ll 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 won’t.” 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 could control very little about her life, so she calmly focused on the things she could control: taking care of her beagle, Logan, making sure her nails were always flawlessly manicured and cooking for her boyfriend.

We messaged on Facebook constantly about what was going on in our own personal health lives ― something that most 25-year-olds don’t ever have to consider. Although Tori’s situation was much more dire than mine, she had so much empathy for my pain and desperation. 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. We saw two actual older ladies strolling along in flip-flops, looking as though they didn’t have a care in the world. I was hunched over in pain, and she was weak from her treatments.

“I can’t even remember what it was like to stroll like that,” Tori said. We wistfully looked out at those women, envying them, coveting their aura of ease and comfort ― something that had been missing from our lives for months.

“My diagnosis wasn’t a death sentence, but it felt like one. I was in constant, agonizing pain, and the treatments still weren’t helping.”

As a juxtaposition to Tori’s calm, measured state, even with a very serious cancer diagnosis and not many options, I spent most days crying or falling down rabbit holes online, reading horror stories about people who had interstitial cystitis and how they were trapped in their pain, never to be released from the horrid cycle of illness. My diagnosis wasn’t a death sentence, but it felt like one. I was in constant, agonizing pain, and the treatments still weren’t helping.

As it turns out, this is because I did not have interstitial cystitis. I never did.

What I had was severe endometriosis that had gone unnoticed and undiagnosed because my symptoms presented a little differently than how they most often do. So how did I come to this conclusion?

After sitting through appointment after appointment and having my pain dismissed, being told I was “depressed,” being told I had “IBS,” just as they had told Tori, even after going to therapy because a male gynecologist suggested to me that my pain was coming from my emotions, I found a great doctor who saw the urgency in my story ― who saw that I couldn’t continue living with such a high level of pain. Endometriosis can only be diagnosed through exploratory surgery, and I agreed to the procedure.

After a laparoscopic excision from one of the most skilled surgeons in Nashville, Tennessee, my pain subsided substantially. However, due to the length of time I’d suffered with no answers and, therefore, without managing the condition, it had wreaked havoc on my organs. Although the beyond-painful endometriosis had been removed, I was left with scarring, scar tissue and a diagnosis of fibromyalgia, which isn’t uncommon for chronic pain sufferers.

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 would not.

While my misdiagnoses led me down a path to antidepressants, ineffective bladder treatments, therapy sessions, wasted money, emotional trauma and possible infertility, Tori’s had far more severe consequences.

Tori passed away in June of 2017. She was 27 years old. I had seen her two months prior. She seemed to be doing well ― she looked great, albeit a little thin, but her cheeks were rosy and her attitude was upbeat, optimistic and cheery. I am genuinely not sure I heard her complain once the entire time she had cancer, which was most of our friendship.

I did not get to say goodbye to her, and that is one of the biggest regrets of my entire life. My boss at the time decided not to give me the day off to drive four hours to see her. The next week, when I informed him ― not asked ― that I would be going to her funeral because she had died over the weekend, he looked down and said nothing. While I still harbor some anger at him about that, much more of my focus is directed at those who didn’t take Tori seriously when she was in pain.

When it comes to many health issues, women are much more likely to be misdiagnosed than men. Why?

  • Many doctors, both male and female, brush women’s health issues off as “complaining” or “being dramatic.”

  • Women’s health symptoms may present differently than men’s ― for example, classic heart attack symptoms may be absent from a woman suffering from heart disease.

  • Sex-specific disorders are even more complex: Many gynecologists tell women to lose weight, to reduce stress or just to go on birth control instead of really taking a deeper look at what’s going on.

  • Many doctors believe that pain is normal for a woman to experience in her menstrual cycle. Though this may be true on a low level, symptoms still deserve examining. The symptoms of ovarian cancer ― which is what Tori died of and can include bloating, fatigue, trouble urinating and loss of appetite ― can be shockingly silent or hard to differentiate from symptoms of other, less fatal conditions.

Ovarian Cancer Awareness Month is September, but I want women (and men and people of all genders!) to be vigilant all year long about their health and their bodies ― not just looking for potential cancers, but for any symptoms that arise and concern them. There are great doctors out there who will hear you, listen to what you’re going through and take you seriously. If you aren’t happy with the way your symptoms are being regarded or treated, seek a second opinion. Seriously! It could save 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. She was one of the first people in her family to graduate from college, and on that sweaty, humid day when we threw our caps in the air and celebrated, I knew it meant something different to her than it did to many of the other graduates.

After Tori died, the urge to text her didn’t subside. At her funeral, her ex-husband arrived looking gaunt, and he sobbed in the back of the church. It wasn’t until I had yanked out my phone and opened Facebook Messenger to tell her about it that I remembered she wouldn’t read it. She wasn’t there.

I sent the message anyway.

Sophia Harris is a writer and content creator based in the Midwest. She’s 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 Joe’s on a Sunday. You can find her on LinkedIn or Instagram, or down another YouTube rabbit hole, where she currently is.

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