www.incontinentsupport.org

Hello all, thank you for taking the time to read this.

So, basically, for maybe the past four years or so I've been having random occurances where my bladder has felt somewhat...weak. Like generally, you know normally your body will warn you that you need to urinate soon, and you'll have anywhere from maybe ten minutes to half an hour to get to a toilet? Instead, for me it's sometimes near-instant, that I have to find a toilet within five minutes or less. Not always, but often. There's also some rare days where I'll need to go as much as ten times in one day (usually it's five), or have to wake up maybe once every hour while sleeping to go to the toilet. I should also note that I have IBS.

How this mainly affects me is that I suffer from acute social anxiety disorder, and up until recently I didn't go out of my home more than once a year. But I've been gradually going back out, first just chilling in the back garden, then going for walks, then heading to local shops...and so on. I'm also losing weight from that and exercising too (being honest, I'm quite a fat dude), which is of course all wonderful...but the urine issue has been getting gradually worse, not better. And it's beginning to affect my confidence, which is exactly what I don't need when I'm trying to get my life back on track (I'm 25 and have never worked, something I'm trying to put straight).

The other problem is that if I were to start using some form of protection - pads/briefs/nappies/whatever they're called - I'm terrified of people I know finding out; I live at home with my mother, her boyfriend, and two sisters. I could probably deal with my mother knowing - she's very understanding and easy to get on with - but I don't speak to her boyfriend often (no hate, just no common ground), and I don't think I'd like him knowing. Much less my sisters, both of whom are younger than me and look up to me (yes, I know that the 'wearing adult nappies = lack of respect from family' idea is silly, and also likely offensive to the incontinent; I apologise). I'm looking to move into my own place at some point, but it won't be for a while. Using protection while I'm here would be difficult to hide, especially disposing of used nappies.

I've had no more than a few wetting accidents these last four-ish years, twice because there was a queue for the toilet, and once because I just didn't wake up fast enough. No-one found out, luckily. Of course, it's easier to cope with urine issues when you don't go out much or have a job; not having a restroom ten seconds away would be altogether different. The IBS doesn't help much either.

So, what do you guys think? Am I incontinent, or just overreacting? Is it tied to my IBS, perhaps, or my (over...) weight? Maybe something to do with the social anxiety? Or I could just be a hypochondriac and this is all in my head. What say you?

Note that I'm not looking for a definite solution (though that'd be nice), just thoughts and musings would be helpful.

I recognise that this is quite a wall of text and I apologise for that. If you read through all of it, good job! Thanks for reading.

If you have not already, I would discuss this with a doctor, but I also have bladder disturbances similar to yours that appear to be a secondary effect of IBS. That is primarily why I visit this forum. These bladder disturbances do not happen to everyone with IBS and are not often discussed by many sources in relation to IBS, but they are reported by many people with IBS, as well as recognized by leading functional gastrointestinal disorder researchers. Interstitial cystitis is a common overlapping condition that involves the bladder, but one does not have to have IC per se to have bladder disturbances from IBS. It's unclear exactly why they overlap, but some probable reasons are some nerves in common to the bowel and bladder (part of the problem with IBS is established to be faulty serotonin signaling and transport-- that's a major neurotransmitter), pressure on the bladder from a full colon, and stress incontinence from pain/discomfort in the abdominal/pelvic/rectal region.

This is a link from a year ago to a post on the blog I write for the grassroots IBS awareness and advocacy group I founded. It is about various non-GI symptoms, but I mention bladder disturbances/frequent urination, and include links to reputable, peer reviewed research.
http://ibsimpact.wordpress.com/2011/09/ ... -symptoms/

Since that post came out, the University of North Carolina Center for Functional GI and Motility Disorders in Chapel Hill, NC, U.S., one of the world's leading research centers for IBS and functional GI Disorders, conducted an online chat on non-GI symptoms of IBS in December 2011. The video presentation portion can be viewed here.
http://www.uncmedresearch.com/video/ewte15.html

The main site for my awareness and advocacy group is at http://www.ibsimpact.com We are not a business or charity but a small grassroots volunteer group of people with IBS, family members, friends and professionals. We're independent of any other organization or site, but are known to and collaborate with many reputable entities and link resources from 6 English speaking countries at the moment, including this incontinence forum. (Schoppy and Joe K. approved my posting here about IBS Impact a while back.) We do not deal in quacks or ads. In addition to the main site and the blog, we also are now on Facebook and Twitter. If you or anyone else has further questions in relation to bladder disturbances or anything related to IBS, I can probably direct you.

Hope this helps. Good luck.

(edited to fix typo in date)

I should have noted in my original opening post that I have already been to see a doctor, though not primarily for bladder issues. I claim ESA (Employment Support Allowance, I think, a benefit halfway between Jobseeker's and Disability) and you need a doctor's note in order to claim it. When I went to get a note back in March I also told him of my IBS and bladder issues, the first time I've ever told a doctor since it's not an easy subject to discuss, obviously. He poked and prodded my abdomen a bit and, on the subject of my IBS, advised me to try Kegels (already do those) and drink peppermint tea (again, been drinking that for years know, makes the bladder issues a little worse but helps a lot with the IBS, much of the time). That's it. He didn't say a word on my urination problems. I'm beginning to think that it was in my head that I told him about them at all. Or maybe he thought I was playing up my problems in order to secure benefits, despite the fact that 'social anxiety disorder', 'panic disorder', and 'agorophobia' have been on my medical sheet for a decade. Hence why I'm so uncertain of what to do next, or whether there's anything wrong with me in the first place, urination-wise. If my GP thinks it's not worth discussing, then what do I know?

Thanks for the links, they're sure to be of use - and thanks for replying.

You're welcome. Many general practitioners are well intentioned, but aren't really up to date on IBS research, especially possible related non-GI issues, and even some general gastroenterologist aren't either. If you haven't seen a functional GI specialist (yes, I know they're hard to come by). and can get referred, that might be worth a try. From your post, it sounds as if you may be in the UK. There are some international IBS experts there. The IBS Network organization may be able to direct you.

Good luck.

Just a minor update: I've been to see a different doctor, who was much more talkative and progressive, and he wants me to keep a bowel/mood diary to see if there's any link between the anxiety and the IBS. He also asked me to provide a urine sample to make sure there's no other issues involved. What a difference switching doctors makes; glad I'm finally getting somewhere.

Meanwhile I had another close call a few nights ago, woke up at 4am and barely made it to the toilet, then couldn't get back to sleep. I feel sorry for people who deal with this on a regular basis; I'm not sure I could handle it.

Minor update: I've been to see yet another doctor (since seeing the last one I kinda suffered a relapse of my social anxiety, and this is the first time I've been outside in about five months). He tested the urine sample - which was thankfully OK - and once again I had to tell someone about the problems I've been dealing with (the IBS, assuming that's what it is, and the odd bladder issues). But... I dunno, he didn't seem that responsive. I told him about the bladder problem, and he thought it was just 'habits'. Habit of... what? If he basically meant 'laziness', then he's quite wrong, it's not like I'm ignoring the urge to head to the bathroom just for the sake of finishing whatever I'm doing at the time. If I'm barely-reading a rather dull book and my mind's not really into it and I still get little prior warning of the urge, then it can't be blamed on inattentive-ness. And surely getting the mental notification that you have to go pee overrides whatever you're doing/thinking about at the time, as it's a result of your nerves, rather than mental complication?

In any case... I also said that I was reading up and getting info from various sources online, and I couldn't even finish my sentence before he started up the old spiel: "Well, you know that you can't really trust people on forums and the like...", which frankly is a dated, tired, and dull-as-dishwater perception, in my opinion. (I recognize that there's a lot of garbage on forums on pretty much any subject - and there's a lot of straight, real info on forums too, such as this one.) I told him that I was only taking info from reputable sources - NHS, Bladder and Bowel Foundation, etc. - and he hmm-ed and shrugged in a "Yeah, but no" way. He then asked if the last doctor had given me their leaflet on IBS - he hadn't, I can only assume he didn't feel it necessary - and gave me their 'leaflet'. It's just the info the NHS has on their site printed out on A4! Thanks, I guess I could always re-read it for a sixth time...?

So he wants me to do another bowel diary - which makes sense, it's been five months and more up-to-date info is needed - and if necessary I'll have a blood test, either the next time I see him or at some future point, I guess.

So yeah; kinda mixed. Of course, it could just be me being paranoid and the doc is completely right. But when you wake up an hour earlier than usual and find that you need to go pee very soon, and you've had nothing to drink just before you went to sleep... or the aforementioned getting-sudden-urge-while-not-really-doing-much scenario... it doesn't feel like a 'habit', or something just in my head.

Anyway: treatment/diagnosis ongoing, so I'll just go with it for now.

Dochira:

Have you had an urodynamic test as of yet?
Have any doctor looked to see if you may have any neurological problems?
Have they done en EMG?
Have they done x-rays of the kidneys?
Have they ever scoped your bladder?

These are basic test that should be done to try and determined your problem.
From my experiences with urologist or any specialist don’t tell them you even own a computer. Most doctor see the net as being ab/dl you can’t look anything up about urological problems without seeing these sights. I have nothing against them each to their own but it does make it hard on you the true incontinent to look credible. I been their done that.
Most doctors if they can’t find something then shrugs it off.

I have been incontinence more than 30yrs. At first I leaked large gushes like 500ml or more. I went to urologist they did nothing and basically said it’s my fault.
My neurologist is the one that found my problem but it was totally be accident.
I have CIDP a serious type of neuropathy and I go through a serious of IV's called IVIg every three weeks these IV's are run over four days.
During the IV my blood pressure would go through the roof and he thought I was retaining too much fluid causing the blood pressure spick so he ordered a Foley catheter during the IV. When the nurse inserted the catheter she got some 2000ml of urine out of me. I was sent back to the urologist this time he took me seriously and found I have sever retention and a flaccid bladder.

When you see your urologist get serious with him do whatever it takes but get him to acknowledge your problem.

2lyle

I'm still at the talking-with-my-doctor stage - I've only seen a doctor twice progressively, as such - so I haven't moved on to anything more advanced yet (though I will likely be getting a blood test soon). Plus my urine problem is nowhere near as intense/difficult as yours; it's just that sometimes I don't seem to get much prior warning of the urge to pee. Like, some days I can wake up, turn on the PC, check my emails and whatnot, and then head to the bathroom... but on other days, I wake up and need to get to the toilet urgently. And I stopped drinking fluids before going to bed years ago.

But yeah, anyway: I'll definitely see about more advanced testing if I don't get much help from my doctor on this. Thanks for the advice.

Dochira

If you are in the UK as I suspect by your opening post then you can self-refer to the Continence Advisor without needing to discuss this with the doctor. That person can do various tests and can help with containment issues as well. It might be worth trying that route as it seems the GP is to attached to the IBS. Don't forget, although the bladder issues might be connected to the IBS it is also possible they have an entirely different cause.

That's true, yeah. I guess I'll do the blood test first, and then decide what to do after that. As I said in my original post I'm really hoping to avoid using incontinence products as I don't live alone, and though I know my family would accept that I've - seemingly - got a problem and that it wouldn't affect their perception of me much/at all, if they found out it'd probably make me more paranoid that I already am... mainly because I'm seen as someone without many 'weaknesses' (I know, incontinence/using adult nappies and the like isn't a weakness in the slightest - it's just my irrational mind at work). I guess I could always just speak to my mother - she's quite empathetic (sympathetic?) and would hopefully understand what's going on. I'm still just hoping all this is just me being a paranoid hypochondriac... but I'd like to go outside and have a job, do stuff, go places etc. without worrying whether or not I'm going to wet myself in public. I'm also worried because - apparently, I don't remember it to be honest - I tried to commit suicide when I was younger, or supposedly had suicidal tendencies, and I'd rather not be pushed (by having an accident in public) into doing something irrational and stupid.

But yeah, ignoring all that - I'll take the blood test, and go from there. Thanks for the suggestion - I'll likely go see the Continence Advisor if nothing comes of the blood test.