Do you have shy bladder syndrome?
By our very human nature, some people are shy, but did you also know that your bladder can be shy? While it is by no means a prerequisite, symptom, or issue that is necessarily tied to IC, shy bladder syndrome (SBS) is a problem that one Philadelphia Inquirer article estimates 7% of the population suffers from.
Thought to be psychologically rooted, SBS - or paruresis, as it is also known - is the term that is often applied to people who have difficulty and/or anxiety urinating in public. For people with SBS, the idea of urinating around (in the general presence of) other people, or the idea of peeing where someone could be near you, is often enough to cause them great difficulty in their ability to void at all. Not strictly limited to public settings, sufferers may also have problems using the washrooms at home if they think/feel like other people are around the washroom.
For many people with SBS, the condition goes much further than simply being "embarrassed" that someone might hear (or see) you void, it may cause them to feel anxiety, panic, stress, increased heart rare, recluse and even an inability to void in public settings at all. Though it may be psychologically rooted, paruresis is gaining leverage as a very real condition and in the summer of 2005 it was recognized by the NHS's online health encyclopedia. Fortunately, it is also know recognized by the American Urological Association, who also speak about it on their website.
For someone with Interstitial Cystitis, the idea of not being able to pee in public would be an incredibly frightening and challenging one to face, as so many of us deal with daily urinary frequency and urgency. Yet if SBS numbers as high as 6-7% of the population are true, than it stands to reason that there are some IC patients who also have shy bladders. Leading to an inevitable "chicken and egg" type of question: Did problems relating to SBS, such as holding in the urge to void for long periods of time, and possibly clenching your pelvic muscles to stop the flow of urine if you thought that you were being heard (while voiding), potentially contribute in some way to the development of your IC, or did IC itself cause you to become more self conscious of your voiding habits?
In speaking with numerous other IC patients, it's quite interesting to hear some of them say that, yes, they do in fact have a hard time voiding in public. Of those that I spoke with, all agreed that the problem started before their IC. It is well established fact, the if you hold in the need to void - not only often but for long periods of time - you are setting yourself up for potential urologically related complications and conditions (such as urinary tract infections). Is it possible that for some people, SBS could have been what damaged their bladders and eventually lead to (or contributed to) their IC?
It's important to note that paruresis is not the same thing as purely physically related urinary retention, a symptom in which despite their best efforts to void, a person is temporarily not able to do void. Physical urinary retention can steam from several different causes including both prostate problems and pelvic floor dysfunction, a very common condition amongst ICers. If such a problem persists or is a frequent occurrence this is a clear sign that something is amiss and medical help should be sought. With SBS, it is not so much that the person is actually physically unable to void (as with urinary retention, where the pelvic muscles and/or urethral system are in some way preventing a person from actually passing urine), but that due to very real psychological reasons they are not comfortable voiding in a situation where they may not be alone, and as such choose (consciously or subconsciously) not to void.
For some people with SBS coping strategies such as running water while trying to urinate, using single occupancy washrooms and/or washrooms with locks, reducing their liquid intake while in public, and for men, using a bathroom stall instead of a urinal can help to deal with the ongoing SBS challenge in their lives. If these measure do not offer adequate relief there are medical steps that can be taken as well, including some that we see in the treatment of both IC and PFD, like life stress reduction, biofeedback therapy, anti-anxiety medications and even the use of catheters (though this is not so much a "curative" step for SBS, as it is a very temporary solution).
Personally, while I've never been a huge fan of voiding in public, or even using the washroom at home if I think that others are near the door, but I would not say that I have SBS definitively. Since the advent of developing both IC and d-predominant IBS, I've had to get over such trepidations if they arise, because quite frankly a little shyness sure beats having an accident, especially in public. I do however experience urinary hesitation as a result of my overlapping PFD. Another point that I find myself pondering over is that ever since I was a little girl, I've often found it hard to void at all if I'm suddenly under a lot of stress or in a highly emotional situation. I remembering being about 9 or 10 years old and raising this point with two female family members, both of whom just told me that it was "normal". While there is some truth to that (from an evolutionary standpoint, it is our body's way of aiding in the "fight or flight process" by allowing us to focus not so much on our impending need to void, but on the potentially hazardous situation at hand), it is not something that everyone experiences. Since developing IC, I've found that this inability to physically "force" or exp ell urine from my body in times of heightened stress or emotions can be a big nuisance. It can induce an IC flare and also upset other IC related conditions, for me. I find that just as when I'm dealing with urinary retention certain things such as applying a heating pad to my lower abdomen, taking a hot shower/bath, rubbing my lower back gently, running the tape while trying to go and muscle relaxant medications can all help sometimes. For those with SBS, some of these techniques may also aid in your ability to void with relative ease.
If you believe that you (or someone that you know) may be suffering from SBS, there are some signs to watch for, such as the inability to void when the urge to do so arises, a sense of anxiety or fear in regards to using the bathroom in public settings, a heightened alertness of sounds or people in the general vicinity of yourself when you are tying to use the washroom, and stress arising from the idea of having to void in anything but a private (locked) bathroom. Interestingly, though SBS seems to be discussed more often, I don't think that the problem of using the washroom in public is strictly related to voiding, but that it can also extend to the ability to have a bowel movement in the same types of situations.
How and why a person develops SBS is difficult to speculate. It can occur at any age and affects both men and women. For some people it might have began if they grew up in a home with only one washroom and were often left feeling as through they had no privacy, for others it might be a fear that someone could walk in on you or hear/smell/see you going to the bathroom. Another idea is that it may be the lingering affect of a long gone physical ailment or the by-product of certain types of abuse (such as a child who was harshly scolded for wetting the bed). Some people may have no idea how this problem began for them, and therefore may have an even harder time combating it with such SBS treatment methods as cognitive behavioral therapy. Whatever the source, it's clear that SBS is both a real condition, and one that may be affecting a percentage of the IC population. So the next time that you're having difficulty voiding, stop and ask yourself if you think it's because of a physical reason or a psychological one, like shy bladder syndrome - and remember that no matter what, if the problem persists book a visit with your doctor.
Further reading on SBS:
http://www.philly.com/mld/inquirer/living/health/15214429.htm
http://www.paruresis-europa.org/en/information.php (Information available in a number of European languages)
http://www.shybladder.org/
http://www.ukpt.org.uk/home/home_Home.htm
http://www.urologyhealth.org/search/index.cfm?topic=410&search=paruresis&searchtype=and
http://www.nhsdirect.nhs.uk/articles/article.aspx?articleID=284
"The Shy Bladder Syndrome: Your Step-By-Step Guide to Overcoming Paruresis" Steven Soifer, Ph.D. et al