I am an interstitial cystitis (IC) patient and a patient advocate. I also volunteer with the Interstitial Cystitis Association (ICA, www.ichelp.org). IC is a chronic bladder condition that usually consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency (needing to go often) and urgency (feeling a strong need to go). As many as 12 million American men and women suffer from IC.
My IC story began on a 2002 car trip from Illinois to Colorado for a family celebration. I noticed that I was constantly asking to stop to go to the bathroom, and was suffering from pain in my bladder that I had never had before.
Over the course of the vacation, my mother, who is a retired registered nurse, also noticed how frequent my trips to the bathroom were becoming. When we got home, she said I should go see my family doctor.
I made an appointment and was given a referral to see a urogynecologist. This was not a specialty I had ever heard of. Little did I know that I was to become very familiar with this specialty and that my life would change forever.
I will never forget November 2002. That’s when I had my first appointment with my new urogynecologist and was told I had IC. I had never heard of this condition and knew nothing about it.
All I knew was I was going to the bathroom constantly, between 60-70 times per day and getting up between 6-8 times or more at night, which caused severe sleep deprivation. I was also suffering from chronic pelvic pain, burning on urination, urethra, and vulvar/vaginal pain.
My doctor began my treatment with the standard first-line treatments outlined in the AUA Clinical Guidelines for IC along with pain management. Unfortunately, it turned out I was allergic to all of the medications that were prescribed to treat my symptoms. I would become very sick, often landing in the emergency room or leaving work due to severe side effects.
Eventually, working in consultation with my doctor, I elected to have two InterStim sacral nerve stimulators implanted to help my urgency and frequency. InterStim treatment has helped me significantly.
For pain, I have found success with heparin and lidocaine bladder instillations; but this brings with it another set of problems with recurrent infections that I am constantly working to manage.
While I have found two treatments that are helpful to me, unfortunately, they have not been able to give me significant enough relief. As much as I wanted to continue to work, I am now on disability due to the severe nature of my IC.
Since becoming disabled, I have become a strong advocate for IC and the need for better treatments, doctors, fundraising, and awareness. I am a patient advocate and help other women and men diagnosed with IC by talking with them on the phone and providing online support via the ICA Facebook Community.
I have established a fundraising project with 100% of the money I raise going to IC research. I ask friends and family to make donations instead of giving me presents for birthdays or holidays. So far, I have raised $3,000 in the last three years for IC research.
Having IC has changed my life forever. I cannot work, socialize, travel, or exercise. As any patient suffering from chronic illness knows, this is a lonely life and I spend most of my time being driven to doctor appointments. But I refuse to do nothing and have chosen to do what I can to help others suffering from this horrible and debilitating disease.
I can talk to them on the phone, help answer questions, and provide support and direction toward resources. I can write Congress asking for support for better research funding. I can write my blog to try to share what I have learned and use social media to help spread awareness.
What helps me cope and “live” with IC is focusing my energy on doing what I can to help others, raise awareness, and be active in the IC community. If I can offer even a little information, answers, support, encouragement, or just let them know I care—then living with IC will have some meaning in my life.