One morning in late September 2003, I woke up and noticed some burning when I urinated. It was just like how I remembered a bladder infection felt. I had only two in my life, one around 1975 and 1985. With those bladder infections I had frequency, I could only pee a little at a time and it was blood tinged. What I was feeling on this September morning was a little different. I was peeing about every 15 minutes, I would go a lot and the urine was crystal clear, and it burned.
After about 5 days of self-treating with cranberry juice and lots of water, I went and had a urine culture. There was no bacteria in the urine, but the doctor gave me a prescription for Cipro anyway. I was better for a few weeks, but developed a horrific yeast infection. In mid November the bladder symptoms came back and I returned to the doctor. He put me on another kind of antibiotic and gave me referrals to a gynecologist and urologist. In the meantime, I started searching the Internet. I typed in “Bladder Infections”, and there it was, the IC Network! I started reading that day and self-educating. I then realized that I might possibly have I.C.
I saw the gynecologist first. I had already had a vaginal culture when I had the urine culture, to rule out any STDs. I knew I didn’t have any, but I let them do the tests to document it. The gynecologist set me up for an ultrasound because he discovered my ovary was sensitive. I already knew I had a cyst there for many years, so I knew why it hurt when he pressed hard into my abdomen. He told me to see my urologist, and then get back to him after the ultrasound. I had an appointment with the urologist about a month later, but ended up calling to go in earlier because I was really uncomfortable. I told them, if I couldn’t get in on in an emergency, I was going to the hospital ER. I got in that day.
The burning I was feeling was incredibly bad and I described it to the urologist as follows: “ It feels like a jalapeno pepper is implanted somewhere down there, but I can’t tell if it’s my vagina or my urethra.” I also told him, that if he stuck a slice of onion under his eyelid that pretty much describes how it feels. I would tell my husband that if I could imagine the word size of the “burning”, it would be 8 inches long and 4 inches high. I was not only burning when I urinated, I burned in the urethra constantly.
After my appointment with the urologist, I had a series of the usual tests, ultrasound of the bladder, urodynamics, and IVP. The tests were not explained to me. I was handed some fancy, glossy brochures, complete with pictures that made the procedures look painless. I was having communication problems with the doctor’s nurse, who was rude to me more than once I was also in need of pain medication and got a few things, like an oxydrol patch and pills to make me pee orange, but it didn’t help. In fact, I think it aggravated it. I still BURNED. It was getting worse, like I had a lit match in there. I would call and complain about the pain, but they insisted on doing all the tests first before I could talk to the doctor again, or before they would prescribe any more medication.
I started to use ice cubes wrapped in a paper towel, then I got inventive and found an old wrapped condom in the nightstand and made a little ice pack out of it. It worked well, but it was only temporary relief.
The final test I had to schedule was the cystoscopy but there was a reason I was putting it off. I had the urodynamics test and wasn’t happy with the amount of pain I was in. After this test, I found a new urologist. I got copies of my records, one to be sent to the new urologist and one sent directly to me.
In the meantime, the tests from the gynecologist came back. I still had the cyst on my ovary, but that is another story altogether. All STD tests, etc. were negative. I also saw my primary care doctor and she prescribed several things which didn’t help. Estrace cream, Clobetosol cream, and Vioxx. I gave the Estrace cream several months to work. I figured if I could get my hormone levels in control, my bladder problem would go away. I was also using Prelief and the diet suggestions from the IC Survival Guide. I never felt a significant increase in burning from what I ate and drank because I burned almost constantly. The only time I didn’t burn was when I was sleeping. My urologist was very reasonable in working with me to ease my symptoms through diet and hormone therapy. He did at one time want to do a potassium chloride test, but I wouldn’t agree to it. I just knew too much about it and didn’t want to experience any unnecessary pain.
In February of 2004 I met a naturopathic doctor through an old friend. I started taking different supplements, most of which I never heard of. They were expensive but I thought I’d give them a try. They helped other problems that I was having, like acid reflux and IBS. As time went on I noticed less frequency. I was going about once an hour, then 90 minutes and then sleeping through the night, occasionally getting up once. But I still had that constant burning in the urethra area. I don’t know if the supplements helped with the frequency, but I like to think they did. I did eventually get my urologist to prescribe Amitriptyline. That helped a little.
I burned for a long, long time, approximately nine months before I finally had the cystoscopy with hydrodistention and biopsy in June 2004. The results came back “suggestive of IC.” The urologist has started me on Elmiron and I will see him in three weeks. Days following the procedure were not as painful as expected. There was some “glass-like” urination for about two days and bladder pressure for one day, but I noticed a difference in the usual burning in that it didn’t seem as bad. I thought it might be the Marcaine that was instilled. Five days later and the burning has once again returned. I will wait and pray for the Elmiron to start working.
This is only the beginning of my story and it will continue. At this point I don’t know if I’ll get better or worse, but I’m so thankful that I can use the I.C. Network as a resource to self-educate and get emotional support from others who also have I.C
