Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
This is my first flare up in many many years. I had forgotten how miserable IC is. How it effects every aspect of my life. And I've noticed that with this one, I'm leaking. Just little bits of urine. I hate this! As if living with IC wasn't enough, now I'm worried about smelling like pee. I hate IC. And there have been absolutely no breakthroughs from the time I was diagnosed 13years ago. I am completely miserable.
Sadly, there are not a lot of treatments, but there are some. Here is what I do when I get into a flare. Take the pain/numbing medication that turns your pee orange or blue. It really works to calm down my bladder down. Use heat to relax your belly. If you have another pain medicine I would take that now and on a regular schedule to try to keep your pain under control. The rest is the same old thing... lots of water and liquids that are not acidic. Rest and don't wait to pee. If you feel anything, tickles or small urges, get on a toilet and stay there until you have completely emptied your bladder. In other words, answer all of your urges.
I was on Elmiron for about 3 years and it did not help me. Following a surgical bladder stretch a few years ago, my dr. told me to just stop taking it. I really only works for about 30 percent of those who use it. That's great, but if you are not being helped after 6mos to a year, talk it over with your dr. and figure out if you should still be paying to take something that is doing you no good.
You might consider seeing your urologist for a 'rescue dilation'. I have endured several of these over the years and they can be helpful. It is just one of the few things you can do to help yourself.
Then you might consider the out-patient stretch. Results are almost immediate after, within a few days of the surgery. First you have to get over the 'insult' to your poor bladder, and get some strength back. I have had a few of those. Sometimes they work better than others. Worth a try.
Lastly, the choice will come down to removing your bladder and hooking up a urine bag. Naturally, it would be a last resort.
I forgot one other treatment. The Interstim implantation. It helps to control urine flow if that is an issue for you.
Not a whole lot else in treatment options. Rather depressing, but motivating. The thought of removing my bladder and starting over with a 'bag', is a good incentive to follow the 'rules'.
Are you taking any meds for urine control?
In the past, I've tried pretty much every treatment there was. Elmiron just made my hair fall out. The surgical procedures really took more out of me than they were worth. I'm currently not on any meds. But I have started taking Prelief again. Popping them like tic tacs. And I alternate between ibuprofen and tylenol. And the benedryl seems to be helping. Or it just puts me to sleep so I don't think about it. It's becoming more managible. And I have seemed to regain control of my bladder.
I'm going to give it a couple days before I call my doc. Hopefully, this is just a mini-lapse and not a full blown relapse.
Healing hugs