Weird Symptoms and Documenting My Experience

For me, hindsight is 20/20. I can look back now and see some of the “weird” things I was experiencing as red flags that should have been checked out sooner. I didn’t start making note of my symptoms until May 2019.

Talking to my gynecologist about blood in my urine

I wrote down notes to take to my gynecologist during my annual visit on June 1st. I really thought everything was going to be gynecology related. I had blood in my urine, but it presented more like menstrual spotting, which is typical for the type of birth control I was on. Same with the clotting, both matched up during when my period should have been. The big stuff I was concerned with was some low pain that seemed to originate from my vaginal canal and difficulty having sex with my husband as it was beginning to feel painful. I was also feeling the most profound fatigue I have ever experienced. She wrote all of this off as PMS and figured I had a UTI.

A deep pain in my left hip

I did OK pushing through these symptoms until I started experiencing a deep pain in my left hip on July 10th that progressed to a nonstop uncontrollable pain. I couldn’t eat from the pain, making me feel nauseous, and I was DRAINED. It all culminated in enough pain that made me drive myself to the ER at 4 AM on July 25th. That day, after x-rays and blood work and CT's and ultrasounds, they found the bladder mass.

My age didn't fit the image of a typical patient

They didn’t diagnose it as bladder cancer for another 5 days as they felt my age and lifestyle did not match with the “typical” bladder cancer patient. It was a painful 5 days of back and forth arguing between a gynecologist, an oncologist, a urologist, and a hematologist until someone decided to do a biopsy and figure out what was going on.

Documenting my experience

Documenting my experience came from 2 needs: my own catharsis and keeping my friends/family informed. I have always loved to write, especially poetry. Thinking up catchy captions and hashtags came naturally. It was a way for me to put into words what I was feeling so that I could process everything. It may be weird to some people that my mom and I took so many pictures, but I am extremely thankful for it now. It allowed me to step outside of myself for the moment and really think about what was happening to me. The writing and photos were huge for my mental health.

Starting my own bladder cancer blog

Then, I just wanted to keep everyone informed of what was going on. I started to notice my posts being shared, comments started pouring in, and I had people from all walks of life -different types of cancers, people who were healthy, all types of people - reaching out to say how reading my story was impacting them. That snowballed into my Facebook page and website NoBladderDontMatter.com.

Educating and supporting others

My goal with writing about all of this is still for my own sanity but has also morphed more towards education and support of others. If I can help one person feel less alone, one person ask about their weird symptoms or one person learn something new, then I have accomplished a job well done.