Hi! My name is Pam. Here is my IC story. I always thought that I had a lot of bladder infections – 3 or 4 a year. Since being diagnosed with I.C., I now realize that these were more than likely not bladder infections, but were IC flares. I always self-diagnosed them, and never had a urinalysis. My doctor had no problem calling in Macrodantin over the phone, so I never got a clear cut diagnosis of a UTI. So, I have probably had I.C. for 4 years, but didn’t get a diagnosis until May 2005.
Up until February 2005, my symptoms would go away within a day or 2 of starting antibiotics, more reason for me to think they were UTIs. But the flare I got in February of this year scared the life out of me. It started at my brother’s funeral. I will never forget that day for many reasons. I felt like I had to urinate, and did, but as soon as I left the restroom, I was overcome with the overwhelming urge to go again. I went back to the restroom, went again, and it was ok. Throughout the day, however, the urge kept coming back. I thought I had another bladder infection. I called the doctor, started pyridium, got some antibiotics, but the urge to urinate never completely resolved. After 4 or 5 days, I saw my primary doctor, who saw no infection but gave me some different antibiotics. By this time, I was becoming very concerned that maybe something was really wrong. It just didn’t seem right. The new antibiotics didn’t help, so I saw a urologist.
By this time, the pyridium was no longer working, and I was waking up every few minutes to pee. Soon, I just stopped sleeping and after about a week, was really concerned. The urologist was kind and reassuring, but I saw him write two words in my chart that I had never heard of: “Interstitial Cystitis.” When I got back to work, I looked this up on the internet, and literally panicked. Did I have this horrible disease? How can this be? These people are in pain, suffer from loss of quality of life, are literally chained to their toilets. No! This can’t be!! I cried and called the doctor back. He told me he did not think I had I.C., because it “did not present that way.” He tried some new meds – Detrol LA, Urelle, Elavil, Torodol… Nothing worked. He even tried to prescribe me Oxycontin, a powerful narcotic. But I was not in pain! I felt like no one was listening to me.
Finally, I think the Elavil put me into a state of anxiety. I called my primary care doctor in tears. I couldn’t function. I wasn’t sleeping. I was afraid I had cancer. Thank God he prescribed me some Xanax to calm me down, and Restoril to sleep. I got my first good night sleep in 2 weeks, and started to calm down. A CT Scan and a cystoscopy were ordered. The cysto was normal, but the CT showed an ovarian cyst and a kidney stone. “Great!” I thought. Maybe this is what’s causing the problems. But none of my doctors thought so.
I followed up with my gynecologist on the cyst and he did more tests and determined it was an endometrioma. “Great!” I thought this was causing it. But, when the doctor did the surgery to remove them, my urologist was also there to do a hydrodistension with a cystoscopy. There was the answer. Tiny pinpoints of bleeding when the bladder was reduced back to normal size. My diagnosis was official. I have I.C.
I have been pressure free since the hydrodistension and removal of my endometriomas, so maybe it was a little of both. I am medication free at this point. All I know is that I’m glad to have a diagnosis, but fearful that my condition will worsen as so many others have. This whole ordeal has made me thankful for my family, especially my wonderful, patient and loving husband who held my hand and wiped my tears away for months while we were waiting a diagnosis.
Pam
