"There Is Always Hope"
By Jennifer (Submitted September, 2004)
“What? You have to go again? We just stopped! That is crazy. You’re like a puppy who has to stop every ten feet and pee on something to mark its territory!”
We were on our way to Cape Cod for our summer vacation, and my parents sat in the front seat of the car, laughing over my mother’s comment. The eight or nine year old me sitting in the back seat, however, did not think it was quite so funny. Regardless of whether we’d just stopped for a break, I had to urinate, and I had to urinate badly. I felt frustrated and alone. Why did I always have to go to the bathroom more than everyone else? I always had to go in the middle of movies, at the mall, in the middle of church, between runs down the mountain when I went skiing, during car trips, and at countless other inopportune moments. Nobody else did this, and even at the young age of nine, I noticed that I was different. I always worried about going places with people other than family – it was embarrassing to ask to stop because I had to pee yet again—and I often avoided those kinds of trips. I was always miserable on them while trying to “hold it” until we got to our destination.
My parents actually asked our family doctor about my perpetual peeing once. He did a urinalysis, but it was negative. So, he just shrugged and said that perhaps it was anxiety about school, or that perhaps my bladder was just small, and that when I hit puberty it would catch up with the rest of me. In any case, he told my parents not to worry, and told me to just try and hold it. Yeah, right! Easy for him to say!
I did try, though. At the very least, I sort of learned to accept that sometimes I peed more often than others, and I quit complaining since it just didn’t do any good. In addition, over the years, “The Peeing Issue” did get better. During high school and the first bit of college, I would have episodes of frequency, but they were punctuated with episodes of normalcy. I’d go weeks, months, even years without any trouble, and I began to forget about my bladder sometimes. When I did have episodes of frequency, they’d last several days to a few months, and they were painless… often I’d chalk it up to either stress or the fact that I’d been drinking too much water, and then the frequency would resolve on its own yet again.
Then, when I was 19 and at college, I developed a very severe UTI. Oddly, I never felt the distinct signs of a bladder infection in the days preceding the kidney symptoms, and the infection traveled to my kidneys before I even knew I was sick. (Since that time, urologists have told me that perhaps it ALWAYS burned when I peed, and that I was just so used to getting that feeling I thought it was normal… I think there is probably some truth in that, as I have described sensations I feel during urination to people and now know it was never normal for me.) All I knew at the time was that suddenly, I had the worst back pain of my life and was spiking fevers of nearly 104 degrees. My doctor on campus gave me a prescription for Bactrim and told me to take that and drink a lot of water.
However, I was too far gone for that. I couldn’t keep the pills or the water down, and finally, screaming in pain, I was hospitalized. I was in the hospital for a week, and during that time I was given two different antibiotics—ampicillin and gentamycin – through an IV. However, despite the excruciating pain I was in, I was denied any type of pain relief… they would not even give me Tylenol! I was miserable, but I realized that in some ways I was not as miserable as the old woman in the next room – she had Alzheimer’s, and they had to restrain her to keep her from wandering off. She would scream for her husband every night, saying he was a professor at the college… but actually, he’d been dead for years. Finally, late one night, I hauled myself out of my hospital bed, and, IV pole in tow, I went to her room, sat with her, and asked her to tell me stories about when she was a young girl. I did this nightly. She could remember that clearly still, and it would make her smile… and somehow, her stories and the way I felt when I got her to smile at me for the first time made me forget about my own agony for a while.
The infection was tough to clear, and even after the IV antibiotics, I left the hospital still needing another 2 weeks of oral treatment. After that, I should have felt better, but I soon realized that my old friend, frequent urination, was back. Over the next few years, I went for several more urine tests, but they were always clear of bacteria. All of my doctors repeatedly told me I was fine. I began to think it was either all in my head, or that my bladder really was small. I assumed I was just going to have to live with it, despite the fact that it made life difficult sometimes throughout the rest of college and through graduate school as well. I went to the bathroom continuously while out at bars with friends. Often I’d have to get up in the middle of classes to urinate and I often wished I could sit through an hour-long seminar like everyone else seemed to be able to, even if they drank a big soda beforehand. I’d have periods of “remission”, but I noticed that the periods of frequency were coming closer together and lasting longer each time ever since that kidney infection.
I finished graduate school and took a postdoctoral position, and still it continued. Meetings were tough; presentations were tougher… stress would amplify the symptoms and I’d be very uncomfortable. Also, as a biologist, I had to do a lot of long experiments, and it was rare that I’d be able to finish them without a break or two. Then I met my now-husband, and we got married… on the plane to Jamaica, where our wedding was held, I was up and down to the bathroom. Even as I was dressing for the wedding, I had to have my maid of honor and my mom help me with my dress so I could pee several times. I remember thinking, “Oh God, please don’t let me have to go during the ceremony!” I didn’t have to, but I should have found it odd that I was even worrying about it!
The final straw came the following Christmas, December 2003. My husband and I flew up to Massachusetts to visit my parents for the holidays. On the way home from the airport, we stopped to eat. I used the restroom after dinner, and it began. Over the next few days, the frequency became worse than ever. I would literally have to pee every 10 minutes, and sometimes, even though there were only a few drops of urine in my bladder, I felt like I had to urinate so badly I thought I would wet my pants. My parents were convinced I was pregnant, but I knew it was something else-- the sensation was so strange that I knew something had to be wrong. I got really scared when the pain began, though. I began having an unending cramping sensation… sometimes like menstrual cramps, sometimes like a heavy bowling ball was sitting in my pelvis, sometimes like someone was reaching up inside my urethra and vagina and pulling down as hard as they could on my bladder. I also had knife-like stabbing pains across my lower abdomen, and often I described the sensation that someone was repeatedly poking a knitting needle up my urethra into my bladder. It was hard to do the holiday thing feeling like that -- walking through the malls and finishing my Christmas shopping with that kind of pain was awful, and the frequency and urgency made it worse and it took forever. Sitting through holiday dinners, with all that cranberry sauce and wine, was excruciating!
After a miserable flight back to Memphis, my husband insisted I see the doctor. I did, and my urine was free of bacteria, although it showed white blood cells and some blood! The nurse practitioner prescribed antibiotics. They made no difference. I could barely drive the 15 minutes from home to work without stopping to urinate, and the urge and pain were so intense I was often in tears behind the wheel of my car. I would get up at least 5 times a night, often 10-15 times, and the lack of sleep, frustration, and pain were getting to me. I went back to the doctor and was given Urispas, and Pyridium. Neither made much difference, although the “spasming” feeling in my pelvis was slightly reduced. Back to the doctor—I was given Urised, and that didn’t make any difference either. What was going on?
Again, to the doctor’s. This time the nurse practitioner brought up the concept of IC. She told me to do a voiding diary, and gave me samples of Prelief and a lot of info on IC. While doing the voiding diary, I discovered I was urinating over 30 times a day!! When I learned that normal was about 7 times or less per day, I freaked – especially since I couldn’t remember EVER going just 7 times a day!
I was scheduled for a urodynamics test, but suddenly, the doctor kept cancelling on me. She cancelled 3 appointments with me in a month, and refused to allow me to take any meds because they would “ruin” the urodynamics test she kept putting off. I was miserable, and finally, my husband called a urologist he knew – he is a teacher, and he’d had the urologist’s sons in school a few years before.
I saw the new uro on Monday, March 1, 2004. He immediately said, after examining me and listening to me, “You have to have interstitial cystitis. There is really nothing else that this could be.” He told me he wasn’t going to do a urodynamics test, because he was pretty sure I would be in excruciating pain during that, and instead scheduled me for a cystoscopy with hydrodistention for three days later to see for sure. While I was still under, the uro told my husband that my bladder was “a mess”—a lot of bleeding places, and several scarred areas. My capacity under anesthesia was 600cc, but the uro told my husband that he would be surprised if I could hold 100-150 cc awake, as my bladder was badly damaged. In other words, I most definitely had IC. Finally, an explanation!
Since then, I have tried many treatments, some of which have helped tremendously, and some of which have not helped at all. I’ve tried DMSO instills, which didn’t work, and anticholinergics like Detrol and Ditropan, which made me retain urine so badly I had to learn to catheterize myself to empty my bladder. That still happens sometimes, during flares, but at least I can do something about it. I also switched uros again, in order to obtain better pain control. My new uro is absolutely wonderful, and I am on Elmiron, Flomax, Atarax, and some things to control my pain. In addition to having IC, I deal with asthma, migraines, chronic myofascial pain syndrome, irritable bowel syndrome, and generalized anxiety disorder-- so some days are still not fun around here, but I do see improvement happening. Recently, I had to give up my job as a research scientist to focus on my health, but I am doing much better without the stress of the laboratory, and I am hoping to eventually go back to work doing something else when I am feeling better. In the meantime, I have the loving support of my healthcare team, my family, and my girls here on the ICN – they help me even in the darkest nights.
I wrote my story because I want to share it with every one here, especially all of the newbies. I want to share that no matter how crappy you feel, there is always hope. I want to be here for all of you, and help all of you, because – just like when I was in the hospital and helped that poor old woman with Alzheimer’s Disease – helping others makes every one involved feel better. It takes my mind off my own pain, and I hope I can help take your mind off yours, if only for a little while. Thanks for reading my story!!
Revised: 3/01/05 - kj