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"Living My Life for Me, Not for IC!"

By Jessica (Submitted June, 2003)

My IC began earlier in childhood, with the frequency and urgency. I was diagnosed with my first UTI in September of 1999. That’s when my world began to spiral downward. In the following months of my first UTI, I developed extremely large ovarian cysts that is thought to be caused by endometriosis. For a 17 year old girl, my health began to deteriorate quickly. I was frightened. For the next few years of my life, I was in the emergency room and doctor’s office with recurrent UTI’s; some within weeks of each other. Doctors kept sending me away with varieties of antibiotics.

In July of 2002, I developed my final UTI. I went in to my new gynecologist’s office (today I call him a miracle worker) and he cultured a urine specimen. That’s when I got the phone call.

“Hi, Jessica, I have the results of your urinary culture here. Everything looks fine. It came back negative for bacteria.” I had never had any urine cultured before, so I wasn’t quite sure what that meant. I knew that I didn’t have an infection, but I didn’t understand why I was hurting and peeing so often.

“What does that mean? What is wrong with me?” Words that passed through many an IC patient’s mouth, I’m sure. That’s when I first heard the devastating words of “Interstitial Cystitis”.

“Given your history, and the fact that we aren’t sure if you’ve ever had a true UTI, it might be Interstitial Cystitis. It’s a condition that mimics a UTI”. With that, we got off of the phone after he referred me to a colleague of his, my miracle working Urologist. I went online that same day and looked up IC. The disease sounded scary, and at that moment I decided I didn’t have IC. I was too young. And apparently, the other doctors had thought so, too. Up until my Urologist, I had seen at least 5 doctors, all who dismissed me with a UTI.

I saw my urologist, Dr. Bailey, and he brought up IC. He was quite serious and explained the disease to me as best as he could. I went home and cried.

“Given your history, and your symptoms, it is a strong possibility. I think it has been overlooked before because of your age.” My mother, who always came with me to the 1,000,000 doctors and appointments through all these years, suddenly looked frightened as well.

My cystoscopy with a hydrodistension was scheduled for February 26, 2003. All of a sudden, my insurance company dropped me and in two weeks, I had to find a new company that would allow me to have the procedure. My husband has a wonderful policy, so we upped our wedding date to February 14, and we wed, making that one of the best things I’ve ever done. But I’ll talk about him later.

All of a sudden this insurance company wouldn’t cover the exam, saying that my condition was “pre-existing”. Dr. Bailey became angered, and seriously told my mother at her work place one day that I needed to have this exam done because it was very serious. He said that he would help me with the insurance company because it was not pre-existing. My cystoscopy rolled around, and looking back, it is one of the best things I’ve ever done. Dr. Bailey found the problem, after months of agony. Although I was relieved to have a name for my illness, I was not relieved that it was indeed IC.

He found the classic pinpoint bleeding, and under the hydro found that my bladder could hold half of what the normal person’s bladder could hold. I went home pretty groggy, but I remember a feeling of relief, knowing that I wasn’t crazy, and that it wasn’t in my head, something a previous doctor had said to me.

My treatment on Elmiron and Elavil began soon after. I’ve been on both ever since. It has only been three months, but I’ve learned a lot about myself in those three months. I’ve learned that I can be very bitter about life. I’ve learned that I’ve thought many times that I wish it were cancer so it could be the end. I’ve learned that though times are tough right now, I’m not alone. There are so many more people suffering just as I am. I’ve learned that my husband meant every word of his vow, “in sickness and in health”. I’ve learned that family is a valuable thing, and that they should never be taken for granted. I’ve learned that the human spirit can take a beating, but that it can heal itself through friendship, hard times, and love. IC has become my disease, and my enemy, and though it rules my life at times, it rules just my physical being…not my spirit.

Part 2: InterStim

(Submitted February, 2005)

After giving all my medications a try, and the instills, nothing was helping my IC. My Urologist no longer knew how to handle my IC symptoms, and so he referred me out to a different Urologist who performed InterStim surgeries. I was to see if I qualify, and to find out more about this treatment.

I went to see Dr. R, the InterStim doc, and he did an in office cystoscopy, checked my urine, and we talked about my struggle with IC. He looked at my history, we talked some more, and he decided I would be a good candidate for the surgery. He gave me some information to take home on it, as well as phone numbers of people who had the surgery and liked it and didn’t like it.

“Go through the information, call the people, do your research, and think about, then let me know of your decision,” he said. So I went home and began to research, make phone calls, and talk to people who had already gone through the surgery. What I found was what Jill once told me; with InterStim, there was no middle. People were either going to love it or hate it.

I went in for my stage one implant on September 11, 2003. I have to admit now, it is all just a blur. During the surgery, the doctor would say, “Ok you’re going to feel a little poke and then some stimulation, tell me where you feel the stimulation and what it feels like”. It was a little embarrassing to have my butt hanging out to at least 6 nurses (male and female), the doctor, and the Medtronics rep, but when the drugs kicked in I didn’t care so much.

The pokes and stimulation went on for awhile, and they had a little trouble locating the right nerve. Finally they found the right nerves, and I was knocked out so that they could make the tunnels and place the leads in. When I woke up in recovery, the rep was programming me and off I went. I had the leads in for 3 weeks, and discovered that right side didn’t work for me, if anything, it hurt. During the trial I wore very loose clothing, and had to bathe with a rag and wash my hair by hanging over the tub. No showers! That was, for me, the worst part.

We opted for the implant because my frequency had gone from 40 times a day, down to 4-10, and at night from 10-12 times a night, down to 0-3. I still had IC pain—PLEASE REALIZE THAT THE INTERSTIM IS NOT FOR PAIN—but at least I was able to function a little easier with less frequency, urgency, and bladder spasms. The implant went in on October 1, 2003, and since that time I have required only a few re-programmings. My frequency remains around 10-12 times a day, but I cannot get rid of my IC pain. I have since gone through another hydro, where I found that my bladder capacity has stayed the same (somewhere between 300-500 cc’s, I can never remember), but with the InterStim it feels like I am able to hold my urine a little easier, because the irritated feeling and the bladder spasms that come from IC have lessened.

If you are reading my story because you are considering the InterStim treatment, I urge you to do your research. InterStim is not for everyone. Please give all the other available IC treatments out there a try first, and give them enough time to do their job. For every success story there is a failure, and the failures are not pretty. I was fortunate in that I had a doctor who was very knowledgeable and a great surgeon. The InterStim horror stories out there have involved some awful doctors, so please make sure your doctor is very qualified for this surgery! Just please keep in mind that if you should go through with this surgery, there are great risks. I am glad I went through with it, but again, this treatment is not for everyone.

There are some brave men and women on these boards who have had some awful failure stories—and those are by far the ones you really need to keep in mind. This is not to scare anyone, but rather, raise awareness because this should really be a last resort therapy. My story was definitely a success though, and if I had to, I would go through it again, but only because I had a very qualified doctor, and plenty of knowledge on my side.

Jessica

Revised: 3/01/05 - kj