"Please Tell Me I'm Not Making It Up"
I am 20 years old now, but I can never remember a time when I did not have something wrong with my bladder. As soon as I was old enough to talk, I remember telling my mother that it hurt “down there” when I went to the bathroom. At age six, I was diagnosed with a urinary reflux by a voiding cystourethrogram. My&nbsmother was told that most children grow out of refluxes, and that the best thing to do would be to wait and see if it got better. So, we waited. For years.
My symptoms of frequency, urgency, and urethral pain came and went until I started puberty, when they gradually started to get worse. I starting seeing a gynecologist when I was fifteen because of very painful periods. She prescribed hormonal birth control pills which really did not help, but I had been living with my symptoms for so long that I just decided to continue as I had been.
In high school and in college I remember having to time everything perfectly so I could go to the bathroom and still get to class on time. Sometimes I would have aching pains in my stomach, and sometimes I would have burning in my urethra. I got really good at ignoring the pain.
I was married in 2003. Sex was always painful for me, but I had no way of knowing that the way I felt was not normal, and I never thought that pain could be related to my bladder, even though I now believe sexual activity makes all of my symptoms worse.
By the middle of 2004, I was voiding about every 45 minutes. Still, I remembered the pain from the diagnostic procedure when I was a child and I was afraid to go to a urologist. Then, last August, I got a really bad UTI and I could no longer ignore my problem. When I first started to get the infection, I thought I was just having a bad day. I had had the symptoms before. Then, I began to see a lot of blood in my urine. I went to my regular doctor and was diagnosed with the UTI, and I spoke with him at that time about the problems I had been having for my entire life. He recommended that I see a urologist, and although I was still afraid, my husband was concerned and encouraged me to go ahead and get checked out. Since I had recently gotten in trouble at work for my frequent restroom visits, I agreed. My doctor referred me to a local urologist.
My first visit with the urologist was not very encouraging. From the first, it felt like he was not listening to me. It was like he was trying to tell me where I hurt, instead of letting me tell him where I hurt. He would not let my husband stay in the room for the vaginal exam. Still, he was the doctor so I assumed he knew what he was doing, and when he suggested an IVP and a cystoscope I agreed. The prep for the IVP was awful, and I have terrible veins so I was very worried about the procedure to begin with.
We arrived that morning and I was dehydrated and very out of it from the medications they had given. It was my first time ever under anaesthesia. When I woke up, there was a nurse there, but my husband had not been called like they told me he would be. I remember coming in and out of consciousness a few times, and once my doctor was there talking to me but I could not remember what he said. I asked the nurse a question about what I was supposed to do now, and she said it had all been discussed with my husband. They let me get dressed and I walked to the x-ray room to do the IVP. After the procedure, the nurse started to leave me sitting in the x-ray room. I asked if she was getting the doctor and she said yes, and I asked if she could please call my husband now.
The doctor spent about five minutes speaking to us. He diagnosed me with “recurrent cystitis” and suggested that I “drink more fluids” and “void frequently.” I was sent home with no antibiotics or pain medication and was told that they would see me back as needed. I cried all the way home. I could not understand how I could have recurrent infections when that recent infection was the only one I had ever had in my entire life. And how could frequent voiding, one of my symptoms, make me better? I was still very woozy from the anaesthesia, so my mom called the office to try to get some more concrete information. The nurse never returned her call. That was when I decided I needed to help myself since my doctor was not going to help me.
I did a Google search for “cystitis” and I discovered the Interstitial Cystitis Network. My first post on the message boards was entitled “Please tell me I’m not making it up,” and several of the wonderful people on the boards told me that it most certainly was not in my head, and that I should keep trying until I got help. The more I read about the disease, the more I began to believe that this was what was wrong with me.
While I was researching, the anaesthetics were wearing off. I was able to work the day after only by taking my heating pad and wearing sweat pants to work, but by the third day I was in such terrible pain that I could barely make it from the couch to the bathroom. I was voiding about every fifteen minutes, and I could not get in touch with my urologist. Finally, I called my referring physician begging for something for the pain and for a referral to a doctor whose name I had gotten from the ICN physician referral page.
I was terrified the first time I went to see my new urologist. I was thinking, “What if he doesn’t believe me either?” From the start, though, I knew he was going to be different. His entire staff was wonderful; his nurse was so kind and considerate, the opposite of the nurse at the other doctor’s office. When the doctor came in, he sat down and listened to me, really listened, and he allowed my husband to stay with me for the entire exam. Afterwards, he said that my symptoms were indeed consistent with interstitial cystitis, but he recommended trying Detrol LA for a couple of weeks just to rule out overactive bladder. I went home with lots of Detrol and lots of hope. Unfortunately, the Detrol gave me terrible insomnia and I had to discontinue its use. It had not really been helping anyways.
By this time, I was very active on the ICN boards, I had read the Interstitial Cystitis Survival Guide, and with the encouragement of fellow ICers I had the courage to finally be more pro-active about my health. I started following the IC diet, and I started noticing a decrease in pain. When I went back to see my urologist, I took him a detailed list of my symptoms along with an informal voiding diary. He said that he did not like to do hydrodistensions and just will not do potassium sensitivity tests because of the pain associated with the procedures, but that he felt comfortable diagnosing me based on my symptoms. He discussed several of the options with me, and we agreed upon some medications to try based on the fact that I may also have some associated pelvic floor dysfunction.
And that is how my IC journey began. Now, I am trying different medications and treatments and staying in constant contact with my wonderful doctor. I have high hopes that soon my doctor and I will find some ways to give me relief. Right now, I have good days and bad days, like all IC patients do. Although my frequency has returned to about where it was before the infection, the pain has not and I do not think it ever will without medication. However, I still go on.
I have a wonderful, supportive husband, an understanding family, and a very close-knit church, and I also rely heavily on the amazing support provided by the ICN message boards and chats. I made the decision to not let my IC run my life. I work full-time, and my husband and I breed and show Ragdoll cats. The pain and the frequency may always be a part of life for me, but that is never going to stop me from being the person I want to be. The best advice I can give to others with this disease is to not give up; it is possible to go on after being diagnosed with IC!
Revised: 4/29/05 - kj