I wondered for years what was wrong with me, and then when I finally learned what the illness was I started to wonder how I was going to live with it. There is something about being caught in the middle of the Social Security dilemma: too sick to work without pain, not sick enough for disability.
Interstitial cystitis is a chronic and debilitating disease of the urinary tract and bladder that affects approximately one million people. It may not be just one singular illness but one incorporating many different illnesses. There is an inflamed and irritated bladder wall that leads to many bladder symptoms. The bladder wall of an IC patient will have stiffening and scarring of the bladder, less bladder capacity as a result of the scarring, small pinpoint bleeding on the bladder (glomerulations) and ulcers in the bladder lining (Hunner’s ulcers). 5-10% of Interstitial Cystitis sufferers will have Hunner’s ulcers, the rest have a non-Hunner’s type. So much isn’t known about the illness, even though it has been around for a while now.
My story begins in 1988 when I begun having urinary tract infections quite frequently. By 1991 they were happening every month and I was on a constant stream of antibiotics. I had so many antibiotics going through me; I thought I’d live on yeast infection cream. The antibiotics were lowering my immune system to the point that I caught every cold that went around. I was also having bad hay fever. My body was drained from the attack that the antibiotics were having on my immune system. There were more times than not when the doctors would give me antibiotics to “fight the infection” and I wouldn’t even have an infection. I just had the symptoms of one.
By 1993 I went to an urologist that was highly respected in our city, one that wanted to do a cystoscopy on me to see why I was like that. I had hope for the first time as he wanted to see why I was having so much trouble with my urinary system. During a combination cystoscopy/hydrodistention/bladder biopsy, he found 26 bladder polyps that were causing all the infections and “moderate” glomerations that he diagnosed as IC “on paper”; but never told me in person. I wouldn’t know about this IC diagnosis until I requested medical records in 2004! In fact, this first urologist told me that carbonated beverages and cranberry were fine to keep the urinary tract infections down, and I now know that those two items are killers for IC patients. The acid in these probably ate up a serious amount of the bladder lining I still had at the time.
After the combination cystoscopy/hydrodistention/bladder biopsy I went into what I considered a remission for about 4 years due to me only drinking water and keeping a constant stream of probiotics going through me. My “remission” may have had 2-3 infections a year (these may not have been infections as all, but just flares that the doctor treated with antibiotics anyhow). During these infections I developed an allergic reaction to Sulfa antibiotics. I spent that day in the hospital on a course of steroids and IV fluids to push the drugs out of my system.
When I started having flares more often and the urgency issue was really getting bad (going to the bathroom up to 40 times a day), I went to a new urologist. The one that put me on Ditropan XL. This helped wonderfully with the urgency and the feeling that I lived in the bathroom. I stayed on that for a while and on one visit I had a very bad infection, with blood, protein, and pus in my urine. He put me on Macrobid. I’d previously been fine on this antibiotic, but this time around it landed me in the hospital near death for a week. I had asked the hospital staff what was the longest they had ever seen a case of Anaphylaxis last like this, and they told me that I was it. They had never seen a case that didn’t go away after as many IV bags and steroids as they had me on. During this visit I found out that I was not only allergic to this antibiotic, but to the common OTC Benadryl as well.
I was scared to death at this point. Scared of any medication practically. I didn’t go back to him for a year, and treated only my urgency issue with Ditropan XL. Finally I couldn’t take the pain and fatigue any longer and scheduled another cystoscopy/hydrodistention for January, 2005. There he found no new polyps, and diagnosed me with IC out loud so that I knew. He sent me home with Pyridium Plus for the pain, although it barely touched it. I filed for disability in April of that year, and started my own advocacy and information website: All info About Interstitial Cystitis. (Now relocating to www.allinfoaboutcystitis.com)
May of 2005 saw me with a whole new batch of problems, panic attacks (which I now know is common among IC’ers). My daily pill intake went to a Ditropan XL, Prozac, and a Klonopin if I was having a panic attack. By now I’ve had IC for at least 12 years and not one urologist has put me on a pain management plan. The Prozac after 6 weeks made me jerk like crazy and I settled on a third urologist out of town. He did an Elmiron installation that helped although I had severe pain and burning directly afterwards. He then put me on Elavil. This antidepressant took the place of my Ditropan. I still hadn’t won my disability case so money was tight. I stayed on the antidepressant at a low dose for 6 months. I gained 50 pounds on this drug. I couldn’t take it anymore. I went off everything at the beginning of April 2006.
I am now combating my IC through diet, serious amounts of water intake, and plenty of rest. I will be going back on the Ditropan XL in May when I can afford it again. IC has taken so much out of my life, and there isn’t really anything to do but a trial and error of what works for you. Sadly, what works for one, may not work for another. But I know it’s not the end of the world, you can survive with interstitial cystitis. There are new treatments and options coming out all the time. If you have the symptoms of IC I urge you to go to an urologist and tell them to test you for IC. Early knowledge can be most beneficial.
The symptoms and signs of interstitial cystitis are varied and not every IC patient will have all of them. It is a difficult illness to pinpoint and this is meant only as a guideline to some of the symptoms that the interstitial cystitis patient may have.
1) Pelvic and perineal pain and pressure
2) Urinary frequency: over 8 times/day; average is 16 times/day; can be up to 60 times/day
3) Nocturia (excess urination at night)
4) Urinary urgency: urge not relieved by voiding
5) Over 9 months of symptoms
6) Dyspareunia (painful sex)
7) Hematuria (blood in urine)
8) Symptoms worsen during menstruation
9) Diminished bladder capacity
10)Penis and scrotum pain and pressure
11 )Dysuria (pain on urination)
12) UTI (Urinary tract infection) symptoms that do not improve upon antibiotic treatment