www.incontinentsupport.org

Hi everyone. Thanks again for your responses to my first post about my first urology appointment. Since then, I’ve been back for a second review that included a cystoscopy exam. Luckily, it doesn’t appear as have any kind of cancer or growth or blockage or other abnormality that is creating my problems. Everything appears to be totally normal. This is a relief. But it also kind of leaves me feeling strangely bad. (Skip to the end if you want to get straight to my feelings

I was very relieved to hear this news right in the office...but it took me a while to process the implication...that something else seems to be wrong. (And then me asking the question, SO WHAT IS CAUSING WHATEVER THAT IS?!?)

Anyways, the urologist essentially said that my bladder does’nt appear able to hold as much as a normal adult...and so I’m emptying more often than most people - sometimes not completely (but in the office, apparently I was able to empty it all the way). So its like a lower than usual bladder size in combination with OAB...or a low capacity that is leading to OAB. I’m not sure.

He prescribed me a long release oxybutynin to try for a couple weeks to see if it helps symptoms at all. Maybe that also will help be experimental in figuring out the underlying cause?? He said the medicine is supposed to relax your bladder and make it so it’ll hold more in between trips to the bathroom. Sounds like this isn’t a permanent thing though - like the bladder gets stretched over time or anything. (Is that even possible?). He didn’t give me any hint of an idea what causes this or what likely caused it in me and I didn’t think to ask...I was so shocked/surprised/happy about the “you dont have cancer” part of the appointment.

So with this news, essentially I feel some combination of embarrassed/ashamed/foolish/silly/freakish/crazy....The doctor didn’t say something to lead me to these feelings...it was more like what he didn’t say. It feels like I am left with the unspoken judgment that “it’s all in my head” or “you need to relearn how to use your bladder properly because there is nothing wrong with it” or “since there is nothing physically wrong with your body, the problem is between your ears.”

I guess part of it is that my symptoms come and go...I don’t have bedwetting every single night. And I dont have frequency or severe urgency during the day every day...it’s hit and miss... But when its happening, I KNOW SOMETHING IS WRONG. It feels a little disheartening to think that I have a mental problem that explains this, and not something in my body. And so it just feels like I’m in this strange gray area. I realize I need to follow up with the doctor some of these questions...I just often need time after interactions to reflect on what’s going on in my mind/heart...it is slow...

Have any of you been through this before? Have you at times second guessed your symptoms? Have you felt freakish or like “its all in your head”? Have you felt ashamed to have these issues? Thanks for this. I realize there are other urologists out there...that there are always other options... But the truth is that i really do like this guy, and it’s not like he’s openly shaming me. And then maybe all this shame stuff is the thing IN MY HEAD!

Ok, ranting over. Thanks for your help.

Your question sounds similar to what I asked about two weeks ago. Still no response? I know the traffic on the site really fell off lately, but I would think someone would have replied with something.



So, could anyone please answer our questions? Together or......individually?

Hello wwboy and due north,

Been there, done that: Urges, frequency, discomfort, greatly reduced capacity, pain, leaking, symptoms coming and going, worrying "it's all in my head", feeling crazy/embarrassed/fearful/isolated. Hearing "Everything looks normal", "it's not cancer", but no other possible causes offered no solice. Distress over "why have I lost control over a very intimate part of my body for 'no reason'?", accidents in front of friends/out in public/at home and all of the stress/anger/fear/embarrassment that comes with that.


Shortly after my problems began, I asked this question of the people here.
It appears that a significant majority of us here don't have a definitive cause for our problems. And that fear/doubts/worry are commonplace when things go awry and we are left not in control.


As to due north's question of "does anyone's isses happen intermittently", the "just in case" discussion here says that yes, intermittent problems happen to many of us. As far as stress being an factor in making our symptoms worse, I can only say that I have read others indicate that this is the case, but for me time and cycles of symptoms (every 4-6 weeks) seem to be a more reliable factor than stress.


It took me a long time to come to terms with needing to wear a diaper, especially since most of the time I get by without one. And if I had to wear one all of the time, I'm sure it would take longer still. But for the time I'm outside of an environment that allows me to get to a bathroom as soon as I need one, wearing a diaper (and the possibility of being discovered wearing one) is much less stressful than having an accident that allows everyone around me to see exactly what my problems are.

You are not alone in dealing with unexplained incontinence issues, my urologist also could not find what was causing my bladder issues. He ruled out any thing life threatening so we were happy with that, from reading other posts it seams some doctors when they can not diagnose the problem will start to guess and look for any answer even pushing the fact it may be a non physical issue.

I am seeing a second urologist in june maybe this time he will find whats causing my issue other then an OAB some members have had it take years and multiple visits to different urologists untill they found a neurological issue. Some times we have to live with the fact there is no know issue just the symptoms of an unpredictable bladder as long as its not life threatening and is managable using meds or diapers its something you can learn to accept and live with.
I choose to skip the meds since they do not work 100% of the time and can cause bigger issues with possible side effects, I have now been back in diapers for 3.5 years and I still have no idea what is causing my issues I only know its not cancer or anorher life threatening issue.

if you did a poll of all the members here and your urologists patients you wil find a large number of us have no definitive diagnosis just an educated guess. There are millions of us who suffer incontinence issues and a good chuck of us have no idea why we just manage our medical issue with either diapers or meds or a combination of the two and we get on with our lives.
the cause of Your bladders issue just hasn't been found yet dont let your urologist make you think its just in your head as its not you are just in the same boat we are waiting for definitive diagnosis.

Question: Did you only have a cystoscopy to diagnose (or not) your bladder dysfunction? There are many other tests doctors can do to evaluate continence issues. Have you had a urodynamics? This can give urologists a lot of information that can be invaluable in order to diagnose your issues. You may also see a neurologist. They look for nerve conditions or conditions of the brain or spine that could contribute to your issues. There are blood tests, MRI’s and CT’s, EMG’s and nerve conduction studies, etc. Neuro tests are highly unpleasant. I’ve had many. They can be painful. But if they find something, you’re gonna want to know about it, not just write it off. This may not be all in your head. There has to be a reason for your issues. You just have to find a doctor who is tenacious enough to find out what it is. I went undiagnosed for 9 years. Bobbing around from doctor to doctor telling my story. Some did not listen. I was labeled by the VA with an anxiety disorder. I can remember seeing the VA doc describing a myriad of puzzling symptoms. He asked about my mental health. I left feeling defeated. I quit seeing him and went private. It was one of the best things I ever did. I found a primary care physician who graduated from an Ivy League university medical school. I brought to her the same symptoms. Incontinence was only part of the equation. She immediately knew something was wrong. I was sent to a neurologist. I was diagnosed with a progressive autonomic neuropathy. It’s not a good diagnosis to carry. It causes me a lot of problems. I have bladder and bowel incontinence, cardiac issues, breathing problems, hypertension, heart rate problems (my lowest HR is 34 and highest has been 200+ beats per minute), and chronic GI distress to name a few. I was so complicated that I was sent to the Mayo Clinic. It is one of the leading research hospitals in the world. I met a urologist who was not only a doctor, but he taught urological medicine as a professor. I saw other doctors such as gastroenterology and an autonomic neurologist who is famous for publishing research in his field. All of this started with bed wetting 9 years ago. I got a diagnosis because someone finally listened.

Thanks for your replies. They are super encouraging. I'm still just barely processing all of this.

I've been on Oxybutynin for a few days now and so far haven't noticed bad side effects...they seem to be negligible if at all present. So that's kind of nice. The downside is that I'm not really noticing much improvement in my symptoms. Certainly, there hasn't been much of a noticeable change overnight...I'm now waking up 1 time or 2 times instead of 3 or 4 times. And I seem to be wet when waking up just as often. During the day, intervals seem to be lengthened to close to 2 hours sometimes, but urges seem to be just as intense as ever.

The only Tests I've had so far are Post Void Residual bladder scans - and cystoscopies. I've also had PET scans because of an unrelated cancer diagnoses taht gets followed up every year. The scan is full body so the urologist was able to check structure and prostate and the like using that. I haven't had any other testing yet. I'm guessing that when I go back in a few weeks, he'll maybe want to urodynamics or other testing unless the drug seems to be working really well.

I don't know what will be next. Like I said before, I live in a rural area with not a lot of options when it comes to urologists. It's tough. I'm hoping this guy will work out... HOping that we figure out the cause and that it doesnt take 9 years. You give me new confidence though to not let it be written off as "all in my head" very quickly.

Thanks again

Echoing what everyone has said better than I could.

It’s not in your head, but there might not be a reason that a doctor can pinpoint. That’s just how it is.

You are experiencing what a lot of folks describe. A lessening of symptoms with the drugs. The question is, is it enough? I am glad to hear you haven’t had any side affects. Headaches and dry mouth were too much for me.

my trouble is not the same as yours been total incon from day one here went threw many tests to see what can be done to keep me dry and clean out of diapers and the pain from all the tests and sickness from the supra public cath placement i had it removed and just let things go was in diapers for bowel incon any way other than the need for aides to change me i am way more happy now ( my incon and w/c are spina bifida troubles )

*Waves hand wildly* Wow! This happens to you too?? Whew, glad i'm not the only one

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"We cannot do great things. We can only do small things with great love" Mother Teresa

"THERE ARE FOUR LIGHTS!" - Captain Picard from Chain of Command, Part II

Although I don't recall the exact figures, it is my understanding that many cases of incontinence are in fact idiopathic. So, you are far from alone in your challenge to identify a cause of your incontinence. I lived that life for many years until Tarlov Cysts were discovered on my s3 sacral nerve in 2006 and identified as the probable cause of my severe OAB.