Ashamed, Second-guessing, after visiting Urologist

[wwboy]

Just an update really quickly.
I’ve been round and round on medications over the past couple years. I got off oxy because it started making me cloudy in the brain. I tried mybetriq until insurance quit covering it - and then vesicare which worked quite well actually. Now I’m off everything (doctors orders) waiting to get the interstim trial. Who has it that is glad they got it?

[michael_dahlke]

Hi wwboy,

I think what you experience is not unusual if it comes to OAB wet. I think doc's are better (or poor) mechanics. The have they're machines and that's it. In fact they are good good finding "physical" problems but if it comes to nerves or other more complicated things they often tend to fail. But anyway - I think there are a lot of things you can/should try first before thinking about Interstim. First of all: The first line treatment of OAB are no pills but behaviour therapy. The second line is medication and the third any think else. So here some hints what I would try first:

- Bladder capacity: You wrote your badder capacity is to small. So bladder training might help to extend in consequence the voiding intervals. It's best to do this with a professional coach or a PT. This is together with setting up a diet plan is by the way major part of the behaviour therapy.

- Diet: There are a lot of foods and drinks that can irritate the bladder. Try to avoid these and see if it get better. Here is a (not complete) list: https://urologyspecialistsnc.com/foods- ... ve-bladder

- Diabetic: Check your blood sugar values. One side effect of diabetes mellitus could be OAB - and - btw - most of the behavioural changes regarding to diabetes may also help to cope better with OAB

- As already mentioned - the cystoscopy is one part - urodynamics the other. While the cystoscopy help to find issues with the bladder wall - like cancer, IC and others problems, the urodynamic help to see if - and how the muscles work together that are responsible for a controlled voiding. A UD can give also a indication for further checks with a neurologist to see if every thing with the transmission of the nerve signals is fine.

And last but not least - I wouldn't trust a doc anymore that simply prescribe pills. For me it takes 3 years and round about 4 doc's to find the root cause for my problems. So don't give up that fast. There are many things you can do. Unfortunaly with OAB it's not that easy, because most of methods that may help to extend the voiding periods are based on behavioural changes and discipline...

[realworldic]

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.”.

This is a very common reaction sometimes it takes years to find a cause and some people don't ever find the "cause". but I must stress just because the doctors don't know of "the" reason it does not mean there is no reason! and I think many of us get that reaction or even have been told "it's in your head" but I personally reject that as a lazy excuse. If a doctor would tell me that I would go to another doctor because they clearly are not interested in finding the cause,

personally I grew up with issues and While I have no recollection of what the doctors said to my parents the way they treated me and my issue clearly they believed "it was in my head" or "I would grow out of it" it was not until I was 26 and my issues were increasing more as I aged that I went to have a surgical treatment to try to discover and treat my issue that when my Aunt of all people told me about a birth defect I had that may have been a cause or trigger.. and it turns out it was! my parents never told me this! up until this time I Had beliefs it was in my head!

So please don't let this get you down and don't let people or your thoughts let you think that there must be something wrong with your mind or feelings, I would bet if you have an issue you do and its ok if you don't find out right now

you are not crazy, silly, or foolish for experiencing issues its ok to be frustrated, worried but I can say this does not need to limit you! I wish you great success in finding your "reason"

[outofmemoryerror]

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 think the feelings you’re describing can be applied to any number of medical issues. So many of us have experienced the skepticism of medical providers when we present a range of symptoms that don’t fit neatly into a box that it’s almost normal to doubt ourselves or seriously consider that we’re somehow imagining our symptoms.

I’m at the beginnings of a diagnostic process to figure out what is going on with me, and like many or most people here, incontinence is only one of my issues. I’ve already been asked by two doctors if I’m sure that many of my symptoms aren’t just due to my depression. Luckily I do think they mostly believed me when I said that I’m certain it’s not. I’ve been ignoring some symptoms for years because I wasn’t sure they were real and the only result is that they’ve gotten worse. But when many of your symptoms aren’t easily testable or even easily described it’s hard not to wonder if they’re actually real.

Just because you don’t have a definitive, detailed diagnosis doesn’t mean that what you’re experiencing isn’t real and that it’s in any way your fault. The best thing I think you can do is what you’re already doing, which is to treat the symptoms as best you can while pursuing a medical diagnosis. Do ask questions of your doctors and push back when you feel they are yanking you around. Hopefully you will get some answers relatively soon.