The hallmarks of IC are urinary frequency and urgency, and bladder pain. It is often associated with other health issues such as IBS, vulvodinia, and fibromyangia. By "associated" I mean that a lot of people with one of those issues have one or more of the others also. There is no connection yet found between them, but it seems more than coincidental. Pain with IC often spreads into the whole pelvic region, shoots down the legs or into the back. Having such severe pain at the center point of your body quickly overwhelms you.
A few years ago I had a great deal of pain in my back. It seemed to be associated with my kidneys, especially the right side. I went to my doctor and he ran a urinalysis and diagnosed a severe urinary tract infection (UTI). (Please note: I always take antibiotics exactly as prescribed and finish them all.) The infection persisted so I returned and tried another antibiotic. The doctor wanted to see me back after a couple of days to retest and make sure the infection was all the way gone. At that point the infection was cleared except for blood in my urine. A while later I was tested again and still had blood in my urine. I was referred to a urologist and by the time I got in there I had another UTI! The urologist also did a kub (kidney-ureter-bladder x-ray) and discovered 5 kidney stones. No wonder it hurt! I was treated for the uti and as the kidney stones persisted I was scheduled for a lithotripsy.
Lithotripsy is a procedure in which ultrasonic shocks are sent into the specific area where the stones have been discovered. The waves break the stone/s into tiny fragments which then pass easily. It is somewhere around 97% successful. Well, I'm just special. A few weeks after the procedure I continued to have pain and blood in my urine. Another kub showed that only about 1/3 of the stone fragments in my kidney were dissolved. When these stone fragments persisted (and I believe there was another infection or so around this point too) they scheduled another lithotripsy. The second procedure was done and in "only" 6 months I was finally rid of all the kidney stones! Since then I have had several more UTIs and a few other stones, but ones that cleared out on their own.
I continued to return to my urologist when UTI symptoms presented. A few times I came in and despite severe pain was told that my urinalysis was clear. So finally a cystoscopy was scheduled. Cystoscopy is a procedure where a catheter in inserted and the bladder filled with saline, then a tiny video camera inserted to view the inside of the bladder. Rather than being a smooth pinkish color the inside of my bladder was spiderwebbed with tiny red lines. At intersections there were pinpoint red pricks. With my symptoms these signs (known as glomerulations) are indicative of IC.
Treating IC is tricky. There are a few options but none will work for everyone. It's a lot of trial and error to hopefully find something that will work. Most end up working with a pain management doctor. Treatments range from pills to catheterization with a "cocktail" of topically applied medications. Diet often plays a role in managing IC symptoms, and all acidic foods may have to be removed from the patient's diet.
I am pretty fortunate in my case of IC. I can go for weeks at a time with no symptoms at all. Diet does not seem to affect my symptoms. I have not yet tried any medications besides an occasional dose of prescription Urelle which works as an antiseptic and anelgesic on the bladder. It also turns your urine neon blue, which is entertaining ;) My case of IC is very much stress related. Almost any time I feeling a lot of stress I get a flare in my bladder. I can go from fine to curled in a chair nearly in tears in a matter of just a few minutes. Sometimes these flares last only a couple of hours, but usually a few days.
My usual treatment for my IC is to manage my anxiety and take Urelle and a good hot bath. Heat is relaxing to spasms that can occur in the bladder. I now keep a bottle of urinalysis test strips. When I feel symptoms of an infection I test myself. If the strip shows signs of an active infection or if the symptoms continue longer than a usual flare, I'll go to the doctor (as the doctor's office is much more accurate), but usually it just reassures me that it's an IC flare, not an infection.
My worst flare was a little over a year ago. I was too cold (being cold tenses my body up and can lead to spasms in the bladder) and under a great deal of stress as I'd gotten lost walking in the dark with one of my young daughters. The ground was icy and I was wearing high heels. All of these things contributed, but I could not "give in" to the flare! We were in a hurry to get to a safe, comfortable place. I had to walk in baby-steps as all my muscles froze up in spasms. After we finally got the evening resolved and got home and warm my pain started to relax. It took a few days to finally resolve, and I was having to urinate a dozen or more times every day instead of just a few times.
IC is one of many 'invisible' diseases. This means that if you walked past me in the grocery store or even lived next door to me you may never know or suspect that I have to organize my life and anxiety around this disease. So please excuse me if I have to run quickly to the restroom or if I prefer to sit under my heated blanket rather than go for a hike in the cold.
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