My symptoms hit the boiling point in the fall of 2013. I woke up one Sunday morning, and as soon as I went to the bathroom, it became apparent that I was at the beginning of a urinary tract infection. I am very aware of what that feels like, since I have had many since childhood. It got to the point some years ago that when I went in with symptoms to see my doctor, half the time, the infection would not show up in the urine tests. But my doctor felt that I knew my body well and that I had just caught it too early to show up on any tests, and he gave me antibiotics anyway.
On that Sunday in the fall of ’13, I was taking a 5-hour trip to tell stories for a small audience. So right away, I began taking Cystex, an OTC analgesic for the urinary tract. It usually did the trick for me when I needed relief from the UTI symptoms, or if I just had a mild irritation that seemed to originate in my urethra.
The Cystex worked at first, but as we headed north, my symptoms got worse and worse. We stopped at a convenience store and picked up 2 bottles of cranberry juice. I figured I would be able to keep the infection from worsening between then and the next day, when I could see my doctor, get my urine checked and get some antibiotics. This time, there was no mistaking the fact that I had a whopper of a UTI.
My symptoms worsened all the way to our destination, and I had to put on a cheerful face while there and especially while performing; even though I was constantly in the restroom with urgent pain and the sensation that I had to urinate, when in fact, I could not. The only relief I received on the way home was by way of one Oxycontin pill I had with me for Myofascial Pelvic Pain Syndrome. It did the job, and I made it home and was able to sleep.
The next day, I went straight to my doctor (a new doctor by this time), but the urinary dip test was negative. No antibiotics this time. That was Monday. By Thursday, I was in excruciating pain and was basically bedridden. I called the GYN who was treating the pelvic pain (and was 2 hours away) and told the nurse my story. They had me come in first thing the next day and the urine test was still negative.
This is when my GYN sat me down for a little talk. He had always suspected that I had Interstitial Cystitis, which accounted for the many times in my life that the test was negative, even though the symptoms were awful. The experience I was having that week confirmed his suspicions. IC feels like the worst UTI that you could imagine, and my symptoms on that road trip worsened because of the acidity of the cranberry juice I was chugging down.
Looking back, I can see the many times I suffered pelvic/bladder pain with no explanation. It had been going on for many years, and at one point, caused me to have to use a walker to get around.
So now I keep to a low acid, no caffeine diet and have had few episodes as bad as that day. The biggest problem is that the IC is directly connected to the pelvic pain issues, and symptoms of one can trigger symptoms of the other. By most afternoons, I am in bed with my feet up. I use Valium vaginally, two times a day for the pelvic pain. I instill medications into my bladder using a catheter for flare ups of the IC, and I use a muscle relaxant when needed.
IC and severe pelvic pain can be debilitating at times. My life has changed a lot because I have to rest my body when I begin to hurt. It hinders taking walks, grocery shopping, working out, you name it. I have been unable to adequately explain my conditions to my family. My husband, who is the only one who lives with me, is the only one who truly gets it. I do whatever I can to avoid symptoms, including wearing very loose clothing that will not aggravate my bladder. I do whatever it takes.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.