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IC Doesn’t Have Control Over My Life

My name is Amanda and I have had interstitial cystitis since I was 16 years old. I remember having a lot of pain in my hips and upper legs which was initially believed to be caused by practicing something I really enjoyed – Tae Kwon Do. Problems with my bladder began shortly after the pelvic pain started, and I constantly felt like I had a bladder infection, yet despite constantly being on antibiotics, they never seemed to help. One day in January of 2007 I was very ill with severe abdominal pain and my parents drove me to the emergency room. The doctor checked everything and told me I had a urinary tract infection. One nurse literally said “it’s loud and clear you have a urinary tract infection.” It was not until August 2014 that I finally found out that what I had thought were recurring UTI’s was actually interstitial cystitis. Through it all, I stayed strong and kept up with my dedication and passion for Tae Kwon Do. I made my black belt and graduated high school a year early at 17 years old.

When I felt like I had a UTI working was definitely challenging. Eventually I became used to the burning, urgency, and frequency, and would tell myself the symptoms were no big deal as they became a normal part of my life. Despite this enormous hurdle, I still pursued my bachelor’s degree in human development and family science, worked as a camp counselor, and exercised. I pushed myself in everything I did, but my bladder symptoms nearly always became worse when I was under the pressures of a normal college student. Fortunately, I attended a university that believes in enabling students to practice self-care. I would go for walks, engage in my faith, stay up late with friends, and took advantage of a mindfulness group. After graduating in May of 2014 – which felt amazing (I never felt so proud of myself as when I walked across the stage) – I went to work as a camp counselor. The two weeks of camps were amazing and exhilarating. I loved singing songs, kayaking, sitting by the campfire, and most of all being around people who were just as happy as I was to be there. Unfortunately, I ended up having to leave due to illness.

The first night with my campers I became really sick. As much as I loved being with them, I knew something was wrong, so I went to the doctor and explained that I started getting pain during lifeguard training. The doctor put me on a course of antibiotics, again for a suspected UTI. What’s more, I then had a fallopian tube removed due to a cyst, had many blood tests, CAT scans, and was even forced to call 9-1-1 due to the severity of the pain, which lasted from May all the way to October. I was on bed rest the whole entire summer – when the pain was at its worst – and was prescribed strong pain medications along with physical therapy. The pelvic pain wouldn’t go away and I started to become very depressed.

While I was suffering, my boyfriend was also struggling with taking care of me and wanting me to be at home with my parents, as it seemed as though nothing was helping. My parents became increasingly concerned and began considering having me come back home even if that meant I wouldn’t have health insurance. Moving home would have required me to have left my great opportunity of being in graduate school to study counseling. I was on the verge of going home when luckily, I found a great doctor who finally provided clear answers.

The initial treatment regimen included bladder instillations and taking ibuprofen. These helped for a little bit, but then the pain started to return. The pain was so brutal that it put me into shock which led me to return to the hospital. At that point, my doctor and I decided more aggressive forms of treatment were needed, such as InterStim® therapy. This, along with the IC diet, was the breakthrough for me. InterStim® left me feeling like I had when I was a young teenager, before my IC had emerged. I stopped feeling the pressure, burning, urgency, frequency, leakage, and, most importantly, the pain. Having finally found relief, I’m now attending my classes at the University of Mary for Counseling and I’m excited to start my counseling internship. Throughout my ordeal I always held on to hope, which allowed me to sustain myself. To me, the battle with interstitial cystitis has been a difficult journey, but I’ve also realized that it doesn’t have control over my life.

Amanda O’Connor