"I Have That Funny Feeling Again"

Her symptoms began as a child but it took detective work as a young wife to get to the bottom of this condition. One womans current journey with diagnosis!

By Melissa (Submitted October, 2003)

Hi. My name is Melissa and I'm in the middle of being diagnosed with this disease I keep hearing so much about. I just had the bladder distention done a couple of weeks ago and I am waiting for my post-op visit to learn if I have I.C. What I do know right now is that the doctor did find irritation and took a tissue sample. He told this to my family but never came to talk to me after I woke up. That made me mad but what can I do? I may find a new urologist after my post-op visit. Anyway, here's my story:

From as far back as I can remember, I recall having the pain/discomfort. I can remember telling my parents when I was around 4 or 5 that I "have that funny feeling again". They would ask me about it and I would say it was my pee. "It burns", I would say. They would check me and I guess they even told my pediatrician about it, who tested me for a UTI on several occasions. The tests came back negative and the doctors didn't know what was wrong with me. I learned to live with it, thinking it was normal. I would find relief by sitting on the toilet after passing urine for a half hour or so. I didn't know why but it made me feel better. I also found a few sitting postions that helped with the discomfort and pain when I couldn't veg out on the toilet. I used to ask my friends if they ever had that "funny feeling" after they went to the bathroom. They would look at me like I was weird. To top it all off I was wetting the bed every night until about the age of 10 or 11. I grew up thinking horrible things about life and my own body. The "funny feeling" or burning/discomfort and bed wetting were the two major reasons for those thoughts. Note: the burning/discomfort was off and on but the bed wetting was constant as a kid.

Then, when I was around 15 my best friend got a UTI. When she told me about her symptoms I thought to myself, "I must get UTI's that eventually clear themselves. I just get them a lot". I thought I had it all figured out. I thought. Then, I contracted a real UTI when I was around 23. My best friend at the time also had one. My symptoms were horrible. My friend and I each took a course of antibiotics. Hers went away and mine didn't. In fact, mine kept getting worse. I thought my bladder was going to explode. So, my doctor tried another antibiotic and tested me for a kidney infection. The kidney infection test was negative and the new antibiotics helped but I still had symptoms for several months off and on. My normal off and on "funny feeling" symptoms were worse after the UTI. Also, what was interesting was that my doctor told me (when I had the UTI) that the bacteria count in my bladder was very low. That was the first time I knew something else was wrong but was too scared to approach the doctor about it.

It was when I got married at 25 and switched my Primary Care Physician hoping that something was finally going to be done. I contracted yet another UTI and the same course of events took place as the first time I got one. The first antibiotic didn't work and my symptoms were the most horrible they had ever been and I've had many UTIs. I was peeing blood and big chunks of "something". I wasn't sleeping and I was in a lot of pain. I almost went to the emergency room on a couple different occasions, but was too embarrased. So, then the my doctor prescribed Cipro and it improved but didn't go away fully. A couple of weeks later I was fortunate enough to get Strep Throat because I gave up on the bladder thing and wasn't even going to say anything (in fact, I told my husband that I thought my bladder was irritated and needed to time to heal). My doctor asked me if my bladder infection went away and I told him that it was a little better but I was still getting the symptoms mostly at night. Puzzled, he took a urine sample from me that day. He said it was clear of infection and I went home thinking that the previous infection just really did some damage and it would improve over the next couple weeks.

A week or so later my husband had a general physical. The doctor asked him how I was feeling and my husband told him of my recurring bladder symptoms. This raised a red flag for the doctor and they made an appointment for me to come it that week. When I got there, he told me that my bacteria count from my last infection was very low (not even high enough to be considered an infection) but that he wanted to give me the antibiotic anyway to knock it out of me and that there was blood in my urine at my Strep Throat visit, which isn't normal after a low-grade infection. He told me he thought it might be I.C. and referred me to a urologist.

My first visit to the urologist was one I'll never forget. I had to relieve myself into this weird machine that read the flow of my urine. The doctors asked me tons of questions, looked at the reading from the "flow" machine, and performed another test having to do with how much urine was still in my bladder after going (it involved a catheter). They concluded that I had a urinary blockage and that it's not "all in my head", which was nice to hear, in a way. I was finally finding things out. He prescribed Cardura and it helped a little bit but not enough. It made me dizzy, anyway. Next, we tried stretching the urethra with these metal rods right in the urologist's office (Ed. Note: Urethral dilations are an old school approach to frequency/urgency and are rarely done now). That was uncomfortable and embarrassing. It helped a little but then the symptoms came back again. Then, I was prescribed a depression medicine that didn't help enough either. Plus, it made me depressed which is ironic. Nothing we tried took it away completely. My symptoms always came back and to be honest I couldn't tell if anything was really helping anyway because my symptoms have always been on and off way before medicine. So, the doctor said we should probably do a test called a bladder hydrodistension to test for I.C.

So, that takes us to now. I am waiting for that post-op visit to find out about the results. I have a feeling I have a milder case of I.C. because my symptoms only get REALLY bad when I have a UTI. When I don't have an infection, I generally feel o.k. during the day. I have my bad days, though, (1 or 2 a week on average) that cause me to resort to the meds that turn my pee orange (pyridium). I love those pills, even though they don't always work. When they don't work I then just try to ignore the pain. If it's really bad I resort to my special sitting position for a half hour to an hour. The position is with my knees drawn to my chest and hugging my knees. I also occasionally resort myself to the toilet for a half hour or so. Those are the days and I am o.k. enough to work and stuff.

It's at night, though, that I HATE my bladder (3-4 nights on average for the burning and every night for the urgency and frequency). It's that gnawing, burning feeling that causes me to have to sit up in bed. Sometimes, I start to cry, but it's more from the frustration of it all, then the pain. The thing that bothers me the most, though is the frequency and urgency. During the day I don't notice it as much. I've learned to ignore it for the most part and keep a positive feeling. But, at night it's a different story and much harder to try to ignore (even though I try because it's the only way to try to get sleep). I have trouble falling and staying asleep because I ALWAYS feel like I have to go no matter how many times I go before bed. Sometimes I'm on the toilet for a half hour or so before I can go even though I feel like I should be able to go right away. A lot of times I don't even end up going. Then, after I do fall asleep each night, I hate to get woken up because when I do (from a noise or my husband moving around next to me) I have to get up and go again or I won't fall back asleep. I wake up very easily and I usually end up tossing and turning all night. It drives me crazy. Even when I do sleep I'm dreaming about it anyway. So, it's like I sleep but I don't. It's hard to describe. Plus, I still have worries about peeing my bed from when I was little and that doesn't help me to sleep, either.

Looking back now it was obviously the never being able to empty my bladder fully that caused me to pee the bed. (Note: just like when I was little, the burning/discomfort is still on/off, only a little more frequent and painful, though- and the having to pee all night is still there. That means I could still be peeing the bed, like I used to but I grew up and learned to get up.) If only my parents and the doctors could have figured it out when I was little. I probably wouldn't feel like this today, or would I?

I've heard that there isn't a cure for I.C. Hopefully, though, they'll find one. I pray for it, but I don't just pray for it for myself. I pray for it for the men and women that have it worse than I. I feel for those of you who can't even walk for days at a time and for those of you who have had your bladders removed. I can't imagine what that must be like for you to deal with it all the time. I only deal with the really bad symptoms on occasion, when I get an infection. I have a milder case and I want you guys to know that I am praying for you and I KNOW it's not all in your head.

(Update: November 6, 2003 - Melissa was diagnosed last week with interstitial cystitis.)

Melissa

Revised: 3/01/05 - kj