By: Nina Torres

In 2016, I was diagnosed with interstitial cystitis (IC), also known as bladder pain syndrome. I was diagnosed at 24 years old; however, I have felt this pain since childhood. Interstitial cystitis is a chronic bladder illness that affects 3-6% of women in the United States. It also affects men but is often mistaken for another illness. According to the CDC, 50 million Americans suffer from chronic pain. Chronic pain patients are often overlooked, which causes distrust in the health care system. Chronic pain is widely underfunded, undertreated, and misunderstood. Interstitial cystitis is a chronic condition that consists of recurring pain, urinary urgency, and frequency.

When I was a child, I have vivid memories of going to the restroom, clutching my hands so tight into fists, and leaning my body towards the ground crying. The pain was excruciating, and the worst part of it all…I could not urinate. The pressure was severe, and at times I could not stand up or walk. I felt pelvic pain but did not know why. I shared this with my parents, and we went to the doctors to find answers.

The first time I went to the doctors, they explained it was a bad urinary tract infection (UTI). I felt relieved to know I was never going to experience the pain again. However, it continued to occur. Every time it happened, we went to the doctors, and they continued to provide me UTI medication. As I reached my teenage years, the doctors began to ask me if I was sexually active because I may have a sexually transmitted infection. They also would explain that I may be pregnant and for me to take a pregnancy test. I felt like I had no voice, especially when I shared I was not sexually active.

Once this had occurred, I knew I had to become my doctor. I began to make a list of foods that triggered my pain. The foods included lemon, lime, oranges, soda, and chocolate. Little by little, I gave up one item and then the next. I began to experiment through trial and error. I wrote foods that were triggering in a food journal. It helped a lot because I felt, at that very moment, I was listening to my body. I was listening to my body’s needs and focusing on my well-being. My mother was supportive and she began to cook differently.

In November of 2016, I was diagnosed with interstitial cystitis at the age of 24 years old. Right before my birthday, I met with a urologist after waiting years to speak to a specialist. He scheduled an outpatient procedure to check my bladder and do a biopsy. I was full of emotions because I was finally going to receive answers. Over the years, I felt my feelings were dismissed. I felt isolated and, at times, a bit unsure about my pain. Unfortunately, I know my story overlaps with many people who suffer from chronic illnesses. At 29 years old, I still have my ups and downs with interstitial cystitis, but it has become manageable through community and care.

I have learned there is power in the community and sharing our stories. Sometimes I thought I was alone, but I have learned I am not. I have a community and family of folks who all care for each other. The chronic illness community shares resources, stories, experiences, and a shoulder to cry on at times. It is beautiful because we are a family. For those who are reading this, you are not alone, and your well-being is vital.

November is Bladder Awareness Month and the anniversary month from when I was diagnosed. If this resonates with you, please know I am here—your voice matters. You are valued, and you are worthy.

I am a Junior Ambassador for the U.S. Pain Foundation and Ambassador for the Chronic Disease Coalition. I also participate in the Interstitial Cystitis Association fundraisers and advocacy days. Joining these organizations has taught me so much about myself and the power of a story.

We are interstitial cystitis warriors. As I begin to share my story on different social media platforms, I want to leave people with this. You are courageous; you are strong and resilient. I love flowers, and it is a medium I have been using for self-care crafts and projects. One of my favorite flowers is the protea because it represents strength and courage. It symbolizes overcoming obstacles. This flower can withstand wildfires and various weather conditions. It is a beautiful flower, just like you! You are not alone. Listen to your body and practice self-care. Most importantly, the chronic illness community is here to support you. You matter, and your voice matters!

About Nina Torres

Nina Torres is a proponent of community activism and human rights. She attended the University of San Francisco and received her Master of Arts degree in Human Rights Education. Nina has dedicated her life to advocating for social issues. She has lived with Interstitial Cystitis (IC) for over 15 years and became involved with the IC community through the Interstitial Cystitis Association. Nina is a Junior Ambassador for the U.S Pain Foundation and Ambassador for the Chronic Disease Coalition. This year, she participated in the U.S. Pain Foundation’s Virtual Advocacy series. She continues to participate in advocacy days and attend advocacy workshops.