Why I'm Sharing My Interstitial Cystitis Story

As a young adult battling interstitial cystitis (IC) and never having health issues up until now, this disease has caused me to lose a sense of normalcy in my life. I was diagnosed last April when I was studying abroad in Ecuador. I began having excruciating lower abdominal pain, which doctors there attributed to appendicitis. I was emergency-evacuated to Miami for the surgery. The pain was so bad that I could not walk, eat or sleep. I was so excited for the surgery to remove my appendix because I wanted the pain to end so badly.

Unfortunately, I reached Miami and multiple CT scans and other tests showed that my appendix was completely fine. Doctors were in disbelief as they looked at my inflamed abdominal area (something I now call the “IC belly,” which happens during bad flare-ups) and exclaimed that they couldn’t help me in Miami, since every test was coming back normal. Still unable to walk, my mom flew from San Diego to Miami to meet me and bring me home.

The next five months were the worst of my life. The pain didn’t subside at all and doctors had no explanation. I was in various doctors’ offices every day of the week and was put on multiple medications in hope that they would magically provide some relief. Each doctor resorted to pushing narcotics at me. As a then-20-year-old, this was the last thing I wanted. I don’t believe this is an appropriate way to truly treat patients. More than anything, I wanted a diagnosis (any diagnosis would’ve done at this point), and I wanted to start getting treatment.  After more scans, multiple uncomfortable pelvic exams, and even a colonoscopy, they had no answer. Everything looked “normal.” But I felt anything but normal.

After a month passed, my OB-GYN diagnosed me with interstitial cystitis, almost as a last-resort diagnosis. They started me on Elmiron, the only FDA-approved medicine for the treatment of IC, and warned me that it may take up to six months to work. They were right. After an additional four months of feeling no improvement, I began to get depressed. Previously an active, adventurous person, I became restricted mainly to my house, as I was unable to walk very much and driving caused an immense amount of pain.  I stuck to the low-acid “IC diet” like my life depended on it, and that helped some, but not enough to keep me below a seven in pain level, on a scale from one to 10. Days of having a seven were relatively good days, if that’s saying anything. I requested a laparoscopic surgery so they could check for endometriosis and perform a hydro-distension to confirm the IC diagnosis. This surgery happened in August 2015, and when I woke up, I was diagnosed with both IC and endometriosis, with pictures to prove it.

I have holes in the lining of my bladder, which causes bladder pressure, bladder pain and pelvic pain. Since I didn’t have the common IC symptoms such as urinary urgency and frequency or pain with urination, confirmation of IC surprised even the doctor who initially diagnosed me. This goes to show that all IC patients are different and can have unique symptoms. In September, the Elmiron eventually kicked in and I’m currently only at a level two or three in pain each day. However, I still have yet to have a total pain-free day since last March. The experience of such terrible pain for an extended period of time has been humbling, to say the least, and has made me appreciate the good days even more. However, it is unacceptable that it took months for my condition to be diagnosed and treated, and it’s discouraging that there aren’t any better treatment options for IC at this point besides Elmiron and Hep-Lido-A bladder instillations.

I want to share my story so my fellow IC sisters and brothers feel less alone. I want to share my story so future patients having similar symptoms as I did can be diagnosed quicker. I want to share my story so IC becomes recognized as a legitimate condition that needs to be taken seriously, despite the unique symptoms affecting each patient and the skepticism it can receive from doctors. I want to share my story so doctors are encouraged to learn more about IC and come up with better treatment methods, because being in pain every day of life is not a way to live at all, especially as a 21-year-old.

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The Mighty is asking its readers the following: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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