Hi, my name is Kim and I was diagnosed with IC in August of 2001, at the age of 33. My life with IC started in March of 2001. In February of that year, my second son was born via emergency cesarean section at 35 weeks gestational age. I was extremely stressed out after his birth with lots of breastfeeding problems, dealing with having two children, and I think I had a touch of postpartum depression.

What were your intial symptoms that lead you to an IC diagnosis?
My initial symptoms led me to believe I had “another” urinary tract infection. It felt just the same as all the other ones I have had in my life – urgency, frequency, and some burning. It felt like my bladder was always full and that I had to pee, but when I would go to the bathroom I got little to no relief and felt like I still had a full bladder. I was getting up at night 3 or 4 times a night, at least, to go to the bathroom and had days where I was going every 15 to 30 minutes.

I assumed it was a bladder infection so I didn’t get too worked up about it, although the symptoms were driving me crazy. I assumed I would have a urinalysis, be put on an antibiotic, and all would be well again. The nurse called with the results of my urine culture and said something about “there being no infection, but some bacteria”, whatever that meant. Another nurse spoke to me when I questioned that, and I think it was at this point that the possibility of IC was raised. She said my OB/GYN wanted to put me on a ten day course of Cipro (broad spectrum antibiotic). If the symptoms did not get better, he would then refer me to a urologist.

What were your initial thoughts of hearing about the possibility of IC?
I began to really get worried because I had only vaguely heard of interstitial cystitis before and really didn’t know what it was. I started the antibiotic hoping it would clear up this mess and then I could move on and have my normal bladder back. Well, it didn’t help. The nurse called to make the referral to the urologist and I stressed that I wanted to be referred to someone good, even if it meant having to travel. She told me that my OB/GYN thought I probably had IC and I remember her saying, “He said to tell you that while it isn’t curable it is treatable,” stressing the “treatable” part. I thought, “Not curable? How can something like this not be curable???”

Becoming the proactive and empowered patient
I got an appointment with a urologist in my hometown 6 weeks later. I was so upset that I would have to live like that for 6 more weeks. It was maddening. I understood why someone might become suicidal with chronic pain or illness. I didn’t know anyone else with this disease and none of my friends or family had ever heard of it before. I began my research on the Internet and thank God I found this site. Having looked at some other sites, something about the ICN site seemed thorough, up to date, and honest.

I read the message boards and was, at first, scared. I desperately did not want to have what these other people were dealing with. This disease sounded so hopeless and the stories of unpleasant relationships with doctors really scared me, too. On the other hand, I was feeling more and more empowered with information for when I did finally meet with my doctor. I felt like I would be better able to gauge his familiarity with the disease if I knew as much as I could about it myself. I also felt it would help me be a more active participant on my health care team.

I met with my urologist for the first time in May and walked in with an IC diary I had already started. I still keep one today. I wrote down as much as I could, as clearly as I could, in terms of my symptoms, when they occurred, when they seemed worse, etc. The nurse had given it to him before he walked into the room and one of the first things he said upon entering was, “Who wrote this? Did you?” I responded “yes” and he said, “Wow, this is really helpful.” I knew at that point that he would probably be a good doctor to work with. This has proven to be very true.

As far as medications go, we started with Detrol LA. He thought that maybe I just had overactive bladder. He said my symptoms could be indicative of IC, but he wanted to rule out some other things first. I had already begun the IC diet and knew a lot of my trigger foods. We tried the Detrol for about 6 weeks and it helped a little, but not much. He then added Elavil and he started to sound like he thought we might be dealing with IC.

What diagnostic procedures were used? 
I saw the urologist again about a month later and he wanted to schedule a cystoscopy with hydrodistension. I had had a little improvement of symptoms with the addition of Elavil, but, again, not much. I had done enough reading here to know that the cystoscopy with hydrodistension was one of the best ways to get a diagnosis and I felt good about this doctor, so I agreed. He had my urine cultured prior to the surgery and we did discover that I had an infection – that had somehow gotten by all the urinalyses he had done in his office. I hung onto a little bit of hope that maybe, just maybe, this was some killer infection and not IC. We are probably the only people out there wishing for infection, huh?

Somewhere deep down I knew that what I was dealing with was IC. I drove home from that last appointment crying because I did not want to face the rest of my life living like that. I had seen some positive stories on the message boards here, but my mind latched onto the scary ones and I was terrified that I would never feel better.

My cystoscopy with hydrodistension did show that I had what my doctor called “classic IC”. I woke up in the recovery room to see him showing one of the nurses my photos and there were glomerulations all over that poor little bladder. I was almost relieved because now I at least knew what I was dealing with and could move on to try some new treatments. He immediately put me on Vistaril, in addition to the current medications

After the cystoscopy with hydrodistension, was anything added to your IC toolkit?
About a month later my urologist wanted me to try Elmiron. I was somewhat prepared for that because I had read enough to know that was the treatment that would probably be next in line. I was terrified of losing hair. He assured me that while it was a possible side effect, that none of his patients had had this happen. I trusted him and wanted to feel better, so I agreed to try it. He told me to commit to trying it for at least 6 months, but preferably a year, before giving up on it.

Have you noticed any improvement in your symptoms?
I slowly began to feel better and better about 2 months after adding Elmiron to my treatment regimen. The other great thing was that I began to add a lot of the foods that used to trigger flares back into my diet and I felt OK. I have been on Elmiron for close to a year now and things have only gotten better. I eat chocolate any old time and pretty much everything else. Tomato on the other hand… I just look at it and think “bladder poison” instead of “yummy pizza”. I don’t even miss tomato as much as I did in the beginning. I guess knowing it causes me great misery is pretty good incentive to avoid it.

I have been very fortunate to have no side effects from any of my medications. A couple of them caused drowsiness for the first few days, but once my body got adjusted, those symptoms left. I also had some nausea the first day or two after starting Elmiron, but that subsided and went away, also.

Is there anything that you would like to say to other IC patients?
I wanted to share my story to offer hope to other patients – especially people who have recently been diagnosed. I used to get so scared when I read about this disease. I felt so awful physically and emotionally and the symptoms were unrelenting in the beginning. My fear was that I would feel that way forever and I was very afraid to hope for better. Today I can honestly say that I feel “normal” 90% of the time. I look at the medications as lifelong and that does not bother me today. Small price to pay for feeling good.

I have so many things to be grateful for today. My doctor has been wonderful and up to date on what is working in the IC world. I have a loving husband and two little boys who have a wife and a Mama who is feeling good most of the time. I do have my bad days or weeks when I get flared up. Even on those days that fear creeps back up and I think, “OK, is this the end of feeling good?” But so far my bladder has bounced back. I try to take things one day at a time and try to never take a day of not noticing my bladder for granted. Isn’t that a wonderful feeling when it happens?

I am so eternally grateful to this site and all of you! Even when the site scared the “you know what” out of me, it also offered hope and that was absolutely what kept me going through those dark, lonely, scary months. That and God – I think God works through other people, too. I try to keep posting on the message boards to give back what was so freely given to me. I don’t know how long I will continue to feel good, but I try not to ruin these good days with worry about what may lie down the road. Life is good again for me. Thank you so much for being there for me!