Sunday, September 23, 2012


Welcome! My IC story begins when I was on a car trip from Illinois (where I live) 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 (a retired registered nurse) also noticed how frequent my trips to the bathroom were becoming and commented that when we got home, I should go see my family doctor.  I made an appointment as soon as we returned and I 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 so 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 have what is called Interstitial Cystitis (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 of medications and pain management. Unfortunately, it turns out I am allergic to all these 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 2 InterStim sacral nerve stimulators implanted to help my urgency/frequency. For me, InterStim treatment has helped my frequency significantly. For pain, I have found success with Heparin & 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 treatment options that are helpful to me, unfortunately they have not been able to give me significant enough relief and as much as I wanted to continue to work, I am now on Disability due to the severe nature of my IC.

Going on Disability is never an easy decision, and it wasn’t for me. One of the best recommendations my IC doctor gave me was a referral to a psychologist to help me deal with what having IC has meant in my life, which as all IC patients know, is significant. I am blessed with a wonderful support system in my family and especially my parents with whom I now live. I did have to sell my home due to my IC, but consider myself so lucky to have parents that welcomed me into their home and insisted I make it as much mine as it is still theirs. My Mom & Dad made this challenging and disappointing life change much easier than it might have been. I am forever grateful for their love and support!

Because of the lack of information on IC, I began to read everything I could find about IC and that’s when I discovered the Interstitial Cystitis Association. Thanks to the information and the work they provide to the medical community and IC patients, I was able to get educated about IC and its treatment options and research. Through my UrogynecoIogist’s office, I met another IC patient who was working to start a local support group and worked with her to make her dream of having a local IC Support Group come true! Through my Support Group Leader and our group, I have been inspired to communicate with other IC patients and work to provide help and direction on where to find the best information on IC and its treatments and current research. And so my journey with IC continues.

My hope for this blog is that it will be a place of positivity, information, support and inspiration. I hope to post regularly; sometimes perhaps just quick thoughts and other times maybe longer pieces about topics I believe are important.

So, welcome.  If you’d like to read more about me, click on the photo or my name in the “About Me” section in the top right corner of this page. There are lots of photos and more information about me. Also, as you scroll down this blog page, you will find more things to explore. 

There is strength in knowledge and I believe sharing information gives us more strength to continue our battle against IC!


  1. I think that this is a wonderful idea Catherine, I also love the fact that your parents are so loving and supportive of you. The picture of the 3 of you is beautiful. I will look forward to your e-mails. You have always been my inspiration ! The first day of my diagnosis you were the first person to respond to me and lead me into an unknown world. You have helped educate me and you have supported me. I have a lot of respect for you for not letting this disease rule you. Good Luck on all of your new adventures, sending message of hope to help people with this dreaded disease.
    Thank you for everything
    Sincerely Val <3

  2. Val; Thank you for such wonderful,kind and supportive comments. I am pleased to know you feel I have helped; that's why I do this and if I've helped just one other IC patient, it's all worth it! Thank you for following me and I will do my best to continue to come up with positive, supportive posts.

  3. I am 65 years old and have suffered from UTI infections for about 15 years +...finally I counted 16 uti infections in 2 years so I went to a uro dr. He cystiscoped me and said he saw nothing but diverticulous (excuse spelling) I couldn't see how that would have anything to do with my bladder. In a few weeks I was in pain again and went to the Nurse Prationer at the Uro dr and she said she thought I had IC so she set me up with the Dr to go in and look at my bladder. He came out and told my daughter that I didn't have cancer but I did have IC and explained that my bladder was covered in scabs and bloody places. I just wonder how long I had this and was being treated for UTI infections. It has been 6 years and I occasionally have flare ups and have to take 6 weeks of Instills and supposed to take Elmiron 3 times a day but it is so expensive and now I am on Medicare and AARP RX and I have to go pick up some tomorrow and it is $195 and the instill is $112. I never expected to retire and have to lay in bed with a heating pad for days. I was taking Loratab that my internist gave me for headaches and for my knees where I had double knee replacement. I also took it for the IC...well...she told me that the Loratabs was worse that anything on my bladder. Why when they have copies of all you medicines do they not tell you this. Well...sorry...have to run to the potty.

  4. Sound like what they were telling you after your cystoscopy with hydrodistention was that you have classic Hunner's Ulcers (a hallmark symptom of IC). I have some but not as many as some iC patients. It sounds like yours are severe.

    I am on Disability due to my IC and I am on Medicare. Your instillations at the doctors office should not cost you anything! I pay nothing for mine. Do you have a Supplemental Policy to cover what Medicare does not? If so, you need to find out why they are not covering your instillations. The general rule of thumb is, if Medicare covers something at their standard 80% level, then your Supplemental Policy will cover the remaining 20%. Does your doctor NOT accept Medicare assignment and is charging you for what Medicare and your Supplemental are not covering? If that's the case then you should find a different doctor that will accept Medicare assignment because you should NOT have to pay for your instillations!

    Elmiron is a whole different story. If your Part D Prescription Drug Plan only covers it at the highest co-pay, there is not much you can do about that. There are Patient Assistance Programs you could look into and see if you qualify. If you are retired with little income, you very well might. So I would check into that. I'll post a link.

    Be sure when you click on this link, you scroll down to the "Programs Offered by the Distributors of Elmiron" section; there are other links to several different assistance programs just for Elmiron.