Interstitial Cystitis Advice

If you are hungry and you are deprived of food this is starvation, if you are tired and deprived or rest this is cruelty, if you have to void (pee) and you aren’t allowed that is torture. Especially if you have Interstitial Cystitis (IC). So would it surprise you to know that a unique technique is sometimes used to help ICers regain larger bladder capacities and less frequent trips to the washroom, in which you actually hold off the urge to void for small intervals of time.

When it comes to treating IC options often lay trapped between a rock and a hard spot. Some patients respond rapidly to oral or intravesical (directly put into the bladder) others respond well but it takes time (months for some medications to take effect, if they are going to) while others still achieve little if any relief. At that point (or earlier if you and your doctors feel it is suitable) the idea of “bladder retraining” may be broached. The first time I read bladder retraining (also called “bladder holding protocol”), the first image that popped into my head was one of potty training a toddler. The first idea was, yah-ummm, don’t really think I have any trouble peeing, seem to be pretty darn good at that one lately. But in terms of bladder retraining for IC treatment, the goal is not to teach you how to pee; so much as to help you (potentially) decrees your overall bathroom trip count and level of bladder sensitivity.

Reading this you should know before hand that it does not always work, and though I have on numerous occasions implemented bladder retraining myself, it is best to at least begin with the help of a doctor, nurse, physical therapist or other properly trained professional. The funny thing is by the time I read the words bladder retraining, I had already been doing it myself for months, trying to make life more bearable (especially at work back then). My crude method was simply to hold of peeing at least five minutes after the urge became so strong I would normally go to void. Since the day I developed IC I have lived with what I have dubbed “continual urgency sensation”, or essentially the feeling that every second of the day, every day of the year I have to pee. It is only when this sensation escalates that I know it’s time to go void. I am not alone in experiencing this feeling. For some ICers it may be relieved either while voiding or for a short period afterwards. I have yet to ever experience either. It’s very strange to always feel like you could pee, I have likened it (for non ICers) to (remember this, back in the days of drinking what you pleased) drinking a 7/11 big gulp, (the really, really mammoth one) your bladder feeling as though it might burst any moment like a water balloon and then not being allowed of pee for hours. Yet after you do finally void, you don’t feel any better, the sensation of fullness and discomfort, cramps and difficulty walking/moving/bending/etc still remains. Makes one shutter at the thought. Yet this is the world in which so many of us with IC live.

So my method was just to hold off five (or even two) minutes longer before I bolted to bathroom to squeeze out a few drops of urine, burning madly as they passed. If I did not experience a flare I could do this over a period of weeks and get it close to voiding only once or twice about ever hour, but in the early days (pre real diagnosis, pre “proper” IC medication and help) flares where common place and most of the time I was going at least five times or more an hour. These days I still implement bladder retraining sometimes depending on the current state my bladder is in, but now I know more about the actual (medical) method of bladder retraining so I feel more comfortable doing it.

The ways in which bladder retraining is carried out can vary slightly, but like a classic dish that every cook adapts with his or her own special touches, it is at its core, the same thing.

ICers often void very small amounts, very often because they are experiencing bladder/pelvic/lower abdominal pain or frequency (and so hence urgency). In the medical world this has been termed as “bladder over-sensitivity” yet these strong urges and high levels of pain rarely (if ever in the case of ICers) relates to the bladder’s real capacity. The urge to go so often means that most people do, you want to escape or relieve even a moment of the discomfort, sadly you re creating a catch-22 of sorts though because your bladder never really gets the chance to properly fill and stretch, thereby staying at it’s proper (pre-IC) size. If this happened and you only lost a tiny, tiny amount of your bladder’s capacity you may not even realize it, but for many with IC their bladders shrink dramatically. In some cases this is reversible or stoppable it depends on many factors, one is what state your bladder is in when you (finally) get diagnosed with IC. A sinister loop begins, the more often you go, the smaller your bladder risks becoming, and at the same time the smaller it becomes the more often you void as it is able to hold only small and smaller amounts of urine.

A lot of treatments options for IC focus on ways to reduce the bladder’s sensitivity; because the less sensitive the bladder becomes the better it is able to fill. In bladder retraining the aim is to gradually, over time, “retrain” the bladder so that it is able to hold a higher volume of urine, and ideally also help to desensitise the bladder as much as possible. You don’t just suddenly say, okay I’m voiding four times an hour lets not void for two hours. Goodness no, this could seriously do you harm (or cause a person to have an involuntary loss of bladder function). Instead bladder retraining focuses on slowly, over a long period of time, re-teaching the bladder to hold more fluid.

Before the actual bladder retraining begins it’s critically important that you keep a voiding diary, to track just how frequently you’re voiding and the volume of outputted urine. Firstly you (and your healthcare professionals) decide on an amount of time to try to increase the duration between trips to the washroom. This may be as little as three or five minutes based on the current condition of your bladder and how often you are voiding. If you re able to do this (and don’t worry if at first you can’t, it may take some time to adjust to saying “no, wait” to your bladder), you may continue waiting five minutes each time for a couple weeks.

Your progress will be noted and monitored, depending on how you are feeling with this change (assuming it’s positively) the increment of time between voids may be increased to say ten minutes each time, or as often as possible. During the night this can be tricky, because forcing yourself to be awake for ten minutes might cause you to not be able to sleep again that night or to lose hours of sleep. During sleep bladder retraining may be “ignored” and resumed the next day.

The goal is to stretch the bladder slowly, and enable it to become more comfortable with holding higher volumes of urine. However before any form of bladder retraining is put into place, underlying issues of pain and pain management must be dealt with, and ICers with very high pain levels are probably not well suited to bladder retraining (at least for the moment). While carrying out bladder retraining it’s important to remember that it my take weeks or even a couple of months to see any noticeable results. By noticeable results I mean that instead of “forcing” yourself to hold the urge to void at bay for perhaps ten minutes you are more comfortable going only every thirty minutes (assuming you were going every 20 minutes prior to start the retraining). One thing you might notice is that though you are gradually able to (actually) hold more urine, or to hold for longer periods of time the initial. However many find that the initial strong urge to pee still happens quickly, even after they are able to increase the amount of time between voids.

Overall, assuming you are not experiencing negative results, it’s a good idea to try bladder retraining for 3-4 months, ICers sometimes feel that pelvic pain decrease more so towards the end of the training period. It’s perfectly fine to keep taking your IC (and other, if applicable) medication while undergoing this trial training period. Some find that they achieve better results if they couple bladder retraining with other techniques like biofeedback, TENS therapy, physical therapy, de-stressing activities and light exercises or stretching (if tolerable). If you are able to achieve results you can either keep trying to increase the amount of time between voids or you can settle for the moment with the level that you have achieved. Don’t feel (nice as it would be) that you have to be able to reach a “normal level of voiding (say only 7 or 8 times a day), this may be really unrealistic. If you were able to cut the total number of times you void per day even by a quarter that would be seen as a positive result. Bladder retraining doesn’t work for everyone, but it is a relatively simple procedure (technique) that you are able to do on your own time, and it essentially doesn’t cost you any money. Forgive the pun, but bladder retraining is something I really urge you to discuss with your doctor, and to give it a go.