IC has stolen my life. I cannot think of anything but pain, pressure, burning, peeing and leaking.
It all started ten years ago. I moved to Florida from New York , where I caught an upper respiratory infection. I had 6 rounds of antibiotics. (I believe this contributed to my bladder problems).
In July, 1994, I thought I had a bladder infection. I was given several courses of antibiotics-still my symptoms of pain (in the genital areas), frequency, urgency, burning remained. Repeated trips to the doctor resulted in “She needs a psychiatrist”. Well after several weeks of lying in bed screaming in pain, my parents took me to a urologist.
He looked at my urine under a microscope and said that there was blood in it. After an IVP that came out normal, he said for me to take my trip back to NY. My “vacation” was hell; I was in pain, scared out my mind about what was wrong. Did I have cancer?
Back in FL, I had my cystoscopy (with no anesthesia). I screamed in pain when the Uro started to fill up my bladder. He looked at me and said angrily, “I haven’t done anything yet”. Then he looked at the TV monitor and said “Oh my God” and quickly unfilled my bladder. Then he said “Danielle, I know this is going to be painful, but I need to fill up your bladder as much as you can stand it” Well I don’t know how much it was filled, but I know I screamed the whole time and put nail marks in the nurses hands. Then I looked at the monitor and started screaming, “OH my God I have cancer”. The uro took the pics of my bladder to my parents and said “I don’t know how your daughter has been walking around like this”. He came back to me and asked if I wore nail polish. I thought this was odd. He said that he had only seen this two times before in men that were exposed to chemicals, and mine was the worst. I asked what it was and he said he could only call it hemorrhagic cystitis. (I know it was IC). I was given elavil and it helped with the pain for a few months but then stopped working.
I managed to maintain all A’s at school, but could not work.
By the time November rolled around my uro sent me to the Mayo clinic because he did not know what to do for me anymore. At Mayo they did another cysto (no anesthesia again). The uro told me my bladder looked fine and did not know why I was still in pain. (Now I know your bladder must be distended for them to see anything). At this point my symptoms were basically just pain (in the genital area) just a bit of urgency and frequency. He said if I wasn’t feeling better in a couple of months to come back.
I was back in January. This time I saw a gyno. They did an exam and a biopsy. The uro said again to come back in a few months, if I didn’t feel better and they would put me in the hospital and run tests.
I started having times of no pain after that, first a few hours, then days, eventually I was doing OK.
From then to 1998, I was pretty much OK. I had some times of pain and urgency and frequency (that scared the heck out of me), but then they would go away.
In 1998, my husband and I moved to Houston . (Got married in ’96). Well I took a trip back to NY for 2 weeks and I guess hubby missed me so much- I got pregnant. I was thrilled. (I didn’t think I could get pregnant after having cysts removed from both ovaries at the age of 17).
This was October of ’98; well in November of ’98 it started again. First frequency and urgency, then pressure and pain. I could not walk, I couldn’t do anything! I barely ate or slept. I was in and out of the hospital. I had an X-ray, cysto, saw an orthopedist, did PT, Saw a psychiatrist. I wanted to die, I really did. When I knew my baby was grown enough to live outside me, I begged the Dr.’s to take her out, so I could just die. Well somehow I made it through and gave birth to a healthy 9lb. 7 oz. baby girl. After the birth, my pain and pressure went down 80%. I still had frequency and urgency, but after the hell of the pregnancy, it wasn’t anything I couldn’t handle.
We moved back to Florida when my daughter was 4 months old. I was still having problems with frequency and urgency. The first uro I saw insisted I had IC without even doing a cysto. I changed docs…The new Doc did an urodynamics test and said my bladder had an “attitude”. My brain was sending messages to my bladder that I had to go when I didn’t. I did bladder retraining. IT worked!!!! I was bladder fine until August of 2003.
In August, I supposedly had a bladder infection. I was given 2 rounds of antibiotics. Then my urine came back negative after being cultured. I was in denial NO NO NO not again. I put off having a cysto until October. In the meanwhile I lost my job. Then came the news I never wanted to hear. My husband came in the recovery room and said the Dr. says you have IC. I didn’t believe it. I said OK that’s fine let’s go home, I know I was in denial. After the cysto my symptoms became worse. After a few weeks, the symptoms got better. Some days I had pain. Some days just urgency and frequency. Some days totally fine!!
Until now, for 2 and half months now, I have gotten only a few days of relief from pain. I cannot take my daughter to school, to dance class, to the park, etc. She watches me lie in bed and cry. She asks me “Mama when are you gonna get better? Or “Mama is you better today”? She prays for me every night. My husband and parents are at their wits end. Oh and the kicker is my old doc said the last time I saw him: I could try injecting Botox in your bladder, but due to your financial situation, I can’t help you.” So I have a new doctor. I have also applied for disability, but found out last week none of my docs sent records.
My new doc has me on Elmiron, Neurontin, and Narcotics. I also take Prozac and Xanax. All these meds do nothing but make me sleepy. He is doing another cysto on May 25th. I had two instillations and the second one landed me in the ER. (Where I was blown off and told I needed to go to a mental institution because I could not handle the pain of my CYSTITIS).
All I can say is that I am hanging on for the love I have for my family, especially my daughter. And my faith in the Lord, that he will take this disease from me, so I can have a life again. And I pray that a cure will be found soon, so that no one will ever have to suffer from this disease that has stolen my life.
