My Diagnosis Story: Strange Symptoms

Being a young woman diagnosed with bladder cancer, the thing I'm most often asked is, "How did it happen?". I've told my diagnosis story many times, and each time I remember another detail or another moment that reminds me how unusual my story is.

I'd like to share my story here for those who haven't heard it before. So here it is, part one of how it all happened.

July 25th, 2019

On July 25th, 2019, I received the most devastating news. "You have cancer."

Looking back, I can now recognize all the signs and symptoms pointing at cancer. But at the moment, I was too young, too healthy otherwise, and didn't fit any of the normal parameters for cancer, let alone bladder cancer.

Instead of going over all the "Well, that was probably" cancer symptoms, I will just start with when I knew something was wrong.

My annual well woman's visit

On June 1st, I went to my annual well woman's visit with my gynecologist. I had written down a laundry list of my symptoms and concerns. Strange pains. Pain during intercourse. Bleeding that did not match up with when my period should occur. Clotting. Constant spotting and cramping.

I went over all of it with her, and she dismissed it all. During my exam, it was very uncomfortable, and she mentioned, "This wasn't painful for you last year, was it?"

I had never had difficulty during a gyno exam. She ordered a test of a vaginal swab, a pap smear, a urine culture, and a blood draw. The blood draw was only because my mom had been diagnosed with thyroid cancer a few months prior. They noticed blood in my urine, but wrote it off as a UTI.

She said I had a possible yeast infection. And diagnosed the pain I had been feeling as vaginismus. I was sent home with antibiotics and an appointment for an ultrasound 2 months later on August 2nd.

Remember that date. It will be important later.

Everything clears

I diligently took my medication. They said my urine was clear, and my pap was clear. But I didn't feel better. I started feeling worse. I had frequent urination but in small amounts. This was attributed to vaginismus. I was exhausted 24/7. I was eating smaller and smaller amounts because I would feel full with just a few bites of food.

Then the hip pain started.

Hip pain

On July 10th, I started to feel an off-and-on ache in my left hip socket. I felt this was one of my normal aches and pains. I have been a recreational and professional dancer for over 20 years, followed by 5 years working a desk job.

I figured I needed to stretch and walk around more. A little bit of Tylenol, and it would go away. But then it started not to go away. And it got worse. July 16th was the last day I went to work. I actually have a picture from this day because I had made an effort to dress nicely to try and perk myself up.

I hate this picture because I can now see how badly I was doing. My once-thick hair is thin and limp. My eyes are dull. My face is ashy. This was a Wednesday.

Spiraling symptoms and extreme fatigue

I ended up teleworking from home on Thursday and Friday as I did not feel well at all, and the hip pain was pretty awful. The only outing I took that weekend was to get groceries at Sam's Club on Sunday, and I actually almost passed out. I constantly needed to stop walking, stretch my hip, or catch my breath.

I did not return to work Monday or Tuesday. I slept on and off on both days. A combination of icing and heat on my hip. I just couldn't keep my eyes open. On Wednesday, I was a mess. I could barely walk down the stairs to let my dog out to use the restroom. I was in pain and just experiencing a level of fatigue that I still can't comprehend.

Going to the ER

That evening July 24th, we ordered some takeout that I could barely eat. As the night wore on, I felt weak and nauseous, and the hip pain was constant. Around 1 am, I ended up throwing up what little I ate. By 3 am on July 25th, I couldn't take it anymore.

Something in my soul said, "This is NOT ok." I got dressed, grabbed a water bottle and a heavy sweatshirt (in the middle of an Atlanta summer), and made the decision to go to the emergency room.

I was so out of my mind I didn't really wake up my husband. I only nudged him and said, "Hey, I'm going to the ER." I got in my car and drove myself, crying the whole way from the pain.