My Story: Living with Interstitial Cystitis

I am an Interstitial Cystitis (IC) patient, volunteer and patient advocate.

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.

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.

Catherine Horine

Catherine Horine

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 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 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 of medications and pain management. Unfortunately, it turned out I was allergic to all of the medications that were prescribed. 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, 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.

I am a member of the Interstitial Cystitis Association. I also have an IC blog and Tweet to help provide information, support and encouragement for others suffering with this disease.

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 $2,000 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 with 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.

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Catherine Horine lives in Grayslake, Illinois.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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