Around May 2023, at 16 years old, I was urinating and shortly after, saw blood.The blood scared me a bit, and it was painful, but I didn’t think to tell my mom anything.

As a couple of days passed by, it was becoming increasingly more bloody, so I finally told my mom. Her reaction was one of distress and disappointment. No parent should have to watch their child go through something like this, and it took me so long to tell my mom what was happening because I felt a sense of embarrassment.

My mom took me to urgent care to see what was going on, and as I was telling the doctor my symptoms, she thought I wasn’t telling the truth and thought I wasn’t being serious. I was prescribed medicine to help the pain and blood while urinating, a urinalysis was run, and I had a follow-up appointment a few days later. I ended up having a UTI, according to the test results.

The hematuria was still there even after I finished the round of antibiotics. Over the course of the next few months, I started developing lower back and side pain symptoms. I went through ultrasounds, loads of bloodwork, CT scans and a cystoscopy. Although the doctors thought something was wrong with my kidneys and my bladder, everything else seemed to look normal. 

After a year, shortly after I finished high school, the medical problems were still ongoing, but it was getting a little bit worse. I was going to see a urologist and a nephrologist, but was still left in the dark.

When my freshman year of college came around, I was in a very dark place with chronic pain every day, on different medications, seeing multiple doctors and in and out of the hospital. Most of the time, it was hard to make it to class, and my grades were slipping because I was in a deep depression from the sickness in my body, with no specific diagnosis. I kept on pushing and learned how to balance my doctor’s appointments and school.

At the end of my freshman year to the end of the summer, I was tested for lupus, cancers and auto-immune diseases; all came back negative. I was told by a doctor that my case is very hard because I am so young and they’d never seen so much workup on an 18 year old, and they don’t know what’s going on. I’ve been to more doctors than I can count on my fingers.

Today, I am still going to doctors with no diagnosis, and I have learned to advocate for myself by going to a larger hospital with more resources. With all that being said, if you are going through a similar situation as mine while still in school, it may be hard, but keep pushing and advocate for yourself.