How to figure out the “why”

[iatec779]

early this year I finally saw a urologist for the 1st time to figure out my leakage issues. I’ve been there only twice and have communicated in health portal a few times. Meds have helped urgency but, I still have leakage in pads without knowing it during day and some nights, loss of bladder control during sleep.
I’ve done uroflow, couple bladder scans, sleep study, all they seem to want to do is give me more or different meds. I’m open to trying it all but ide really like to know the why, I have wet pads randomly during the day.
Anyone have trouble getting to the bottom on why this is happening to you?
Guess I’ll bring it up again at my next appt. I go to a large highly recommended hospital and no where else larger to go in area as far as seeing different urologist.
Thoughts on how I can actually figure out the why is appreciated.

 

[mickdl]

Hello iatec,

It would be important to know what the urologist suspects to be the cause and what kind of incontinence it is.

Then we can tell you from our own experience how it was with us and what helped.

Basically, it is unfortunately so that you have to bring some patience. These problems do not just disappear overnight like a cold but you have to do a lot yourself.

What this can be in detail is very different and it always depends on the reason for the incontinence. The general approach is always to try to eliminate the root cause. Unfortunately, it is sometimes not easy to find it out. In complicated cases, this requires the cooperation of several specialists (urologists, neurologists, radiologists, internists, etc).

So, if you are not getting anywhere with medication and the urologist has no explanation for the root cause, then a clinic with a certified pelvic floor center is often the better option.

 

[Petya217]

early this year I finally saw a urologist for the 1st time to figure out my leakage issues. I’ve been there only twice and have communicated in health portal a few times. Meds have helped urgency but, I still have leakage in pads without knowing it during day and some nights, loss of bladder control during sleep.
I’ve done uroflow, couple bladder scans, sleep study, all they seem to want to do is give me more or different meds. I’m open to trying it all but ide really like to know the why, I have wet pads randomly during the day.
Anyone have trouble getting to the bottom on why this is happening to you?
Guess I’ll bring it up again at my next appt. I go to a large highly recommended hospital and no where else larger to go in area as far as seeing different urologist.
Thoughts on how I can actually figure out the why is appreciated.

I do not know the root cause of my issues. I've been to urologists, neurologists, had a bunch of X-rays, MR scans, UH diagnostic scans, did lab tests from blood and urine, visited pelvic floor specialist, still noone has any idea. All they can say is they find nothing wrong with me. Yet, I still can't control my urine, so there is something wrong, but noone knows the reason.

I gave up on finding it out. And I refuse to take meds without knowing what is the reason, as they are pricy and have a bunch of really unpleasent side effects. I can manage my condition with diapers and move forward with my life.

 

[Pino]

I am with Mick on this, we do need some more information about the results and opinions, what about your prostate, all O.K. there?
Do you have got other conditions as well? For example Diabetes? Dysautonomia? Polyneuropathy? Depression?
What about your spine? All O.K. here?
Which medications are used for you?

 

[mickdl]

Hi Petya,

if it‘s ideopathic then this is basicaly a good and a bad news… In this case it have often a psychological root cause. The good think is, that nothings is physical damaged that could later cause a bunch of other problems. The bad think is, that - depending on your willingness to dig deeper into it you propably will never find the answer and end up just in managing the situation.

 

[Pino]

I do not know the root cause of my issues. I've been to urologists, neurologists, had a bunch of X-rays, MR scans, UH diagnostic scans, did lab tests from blood and urine, visited pelvic floor specialist, still noone has any idea. All they can say is they find nothing wrong with me. Yet, I still can't control my urine, so there is something wrong, but noone knows the reason.

I gave up on finding it out. And I refuse to take meds without knowing what is the reason, as they are pricy and have a bunch of really unpleasent side effects. I can manage my condition with diapers and move forward with my life.

Three urologists said to me "everything is fine", they found nothing, said it is all in my head.

I did not accept that and convinced my family doctor for a transfer to a special clinic for continence.
They did the UDM and found a neurological dysfunction and later suspected interstitial cystitis.
Later i learned, that Dysautonomia is often combined with bladder dysfunction, but "nobody" knew it, so they did not look for it.
Same for IC and ME, it is just nearly impossible to find a doctor knowing both, but it is a known comorbidity.
Sometimes the doctors simply do not look for the right stuff and / or have no clue and the result is "idiopathic" or "psychosomatic".

 

[iatec779]

I guess it’s my nature to know why something is the way it is. So far they just give me meds and say try this. Which, have helped slightly but not fixed it.
Maybe there is no fix and I need to get used to the new life of wearing pads daily. I’m just not ready to give in and accept that until someone says this is exactly the issue and no fixing it.
Guess I’ve just been frustrated and impatient lately that I haven’t seen much improvement. Tired of going to bathroom noticing a wet pad and not knowing why or even feeling it happen.
Think I will send urology clinic another message and ask a few more questions. See what they say.

 

[iatec779]

About me since a few asking…
biggest 2 contributing factors according to Dr are my sleep apnea and diabetes.
I been on a bi-pap for 13 years and recently had it all reviewed. I’m not waking up due to apnea or low O2 with my current machine.
Diabetic for 5 years or so. I take meds to manage sugar level, A1c is 7.2 right now so not crazy high.
Rest of labs are good.
Urology says I have OAB and urge incontinence.
Prostate exam few months back was ok they said.
No other knows neurological issues I know of. Only ever had 1 surgery in 45 years, to Remove appendix.

 

[BabyHailey1977]

I do not know the root cause of my issues. I've been to urologists, neurologists, had a bunch of X-rays, MR scans, UH diagnostic scans, did lab tests from blood and urine, visited pelvic floor specialist, still noone has any idea. All they can say is they find nothing wrong with me. Yet, I still can't control my urine, so there is something wrong, but noone knows the reason.

I gave up on finding it out. And I refuse to take meds without knowing what is the reason, as they are pricy and have a bunch of really unpleasent side effects. I can manage my condition with diapers and move forward with my life.

That’s what I decided as well. My urologist was shocked when I told her I didn’t want to take meds. My reason is that I worked with a lot of chemicals in the military and don’t want to expose myself to more without knowing the why. Also, the side effects aren’t worth it to me.

 

[mickdl]

I think there are many with different background and experiances. For me it was a bit like for Pino. In my case the urologist had found two of the three problems - and was at last able to cure the pain problems from the bladder. When it went even worse with my incontinence and I also began to loose stool I started also searching for other explanations. Several MRI‘s, UD‘s and SSEP later it was clear that a spine problem is the root cause. Bad luck for me because because there is no cure and I‘m lucky if I not end up in a wheelchair…

 

[mickdl]

Hi Iatec,

If you not already did it I would try to get some MRI’s namely from the brain, the cervical spine and the lumbar spine. This is often much easier as to get a date scheduled with the clinic. Micro Strokes as well as compressions of the spinal cord can have such a effect.

I had always thought that there must be horrible back pain in such a case but this was not the case for me. I had a bike accident many years ago, where my where my intervertebral discs were compressed. This time I had bad pain and also some miss sensations on arms and legs but this was gone with intensive training. Many years later the miss sensations came temporarily back - but without pain. I did’t thought about the spine at this moment. But when the incontinence get worse I remember the accident and thought the spine might be a reason. The MRI then shows, that in the meantime several intervertebral discs were pressing on the spinal cord.

Unfortunately, there is not much hope for a chirogic solution of the problem, because among other things there are now overgrowths that cannot be removed minimally invasively. The chance that ithe surgery makes it even is unfortunately given and the chance that the incontinence will disappear after a surgery is low because the compression is to long there. I'm trying now just for the time being as long as possible to delay the process with the muscle building and hope that this will work for some years and delay the surgery for the time.

 

[iatec779]

Hi Iatec,

If you not already did it I would try to get some MRI’s namely from the brain, the cervical spine and the lumbar spine. This is often much easier as to get a date scheduled with the clinic. Micro Strokes as well as compressions of the spinal cord can have such a effect.

I had always thought that there must be horrible back pain in such a case but this was not the case for me. I had a bike accident many years ago, where my where my intervertebral discs were compressed. This time I had bad pain and also some miss sensations on arms and legs but this was gone with intensive training. Many years later the miss sensations came temporarily back - but without pain. I did’t thought about the spine at this moment. But when the incontinence get worse I remember the accident and thought the spine might be a reason. The MRI then shows, that in the meantime several intervertebral discs were pressing on the spinal cord.

Unfortunately, there is not much hope for a chirogic solution of the problem, because among other things there are now overgrowths that cannot be removed minimally invasively. The chance that ithe surgery makes it even is unfortunately given and the chance that the incontinence will disappear after a surgery is low because the compression is to long there. I'm trying now just for the time being as long as possible to delay the process with the muscle building and hope that this will work for some years and delay the surgery for the time.

Sorry to hear about your condition; that’s a tough situation.
I did have a fall from about 4 feet up right on my back/head required about 15 staples in my head 6 years ago or so. Only thing in recent history I can think for regarding spine. 20 years ago I was passenger in car accident that twisted 2 vertebra slightly mid back. I still see a chiropractor for that occasionally.
I’ll ask about MRI next time I speak with urology.

 

[sledder23]

Hi Iatec,
I’ve got the same thing diabetic wise. A few things happen with diabetes and one of the mechanisms has to do with layers in the detrusor changing with increased sugar and higher urine production. I’ve got OAB and urge as well and just accept that I’ll be managing this from here on out.

A few good reads of studies that I’ve dug up in the past shed some light on the changes, but they’re still researching what happens with the bladder after diabetes. Look it up. If I run across the studies I’ll paste a link.

 

[Pino]

Hi Iatec,

when Diabetes is diagnosed for several years the chances are high you have got some kind of autonomic neuropathy as well, this is a common cause for a neurogenic bladder, in this case perhaps neurogenic detrusor over activity, resulting in an OAB wet.
You should get an UDM for sure. Best wishes.

 

[sport1]

early this year I finally saw a urologist for the 1st time to figure out my leakage issues. I’ve been there only twice and have communicated in health portal a few times. Meds have helped urgency but, I still have leakage in pads without knowing it during day and some nights, loss of bladder control during sleep.
I’ve done uroflow, couple bladder scans, sleep study, all they seem to want to do is give me more or different meds. I’m open to trying it all but ide really like to know the why, I have wet pads randomly during the day.
Anyone have trouble getting to the bottom on why this is happening to you?
Guess I’ll bring it up again at my next appt. I go to a large highly recommended hospital and no where else larger to go in area as far as seeing different urologist.
Thoughts on how I can actually figure out the why is appreciated.

I go to the urologist next Mo. I just wear my padded incontinence pants. I also have diabetes which is a main cause.

 

[sledder23]

https://www.med.upenn.edu/idom/Newsroom/documents/Chacko_DiabeticBladder.pdf

Mechanisms of Action for Diabetic Bladder Dysfunction — State of the Art - Current Bladder Dysfunction Reports

Purpose of Review Diabetes (DM) is a common cause of lower urinary tract symptoms (LUTS), known as diabetic bladder dysfunction (DBD). The phenotype for DBD is described in the literature with considerable heterogeneity and includes poor sensation, increased compliance, detrusor underactivity...

link.springer.com

12. Retinopathy, Neuropathy, and Foot Care: Standards of Care in Diabetes—2023

The American Diabetes Association (ADA) “Standards of Care in Diabetes” includes the ADA’s current clinical practice recommendations and is intended to pro

diabetesjournals.org

These were a few of the studies that better helped me understand what to expect from my bladder going forward with diabetes.

Best of luck and wish you well with the management.

 

[nikthewerelion]

OK wow I read the beginning part of that article the abstract in the summary. So I know I have a better basic idea of why I am having issues with my bladder. being on a diabetes medication‘s since like 2018 to help control my blood sugar and also being on a glaucoma eyedrops med that is known to cause issues with bladder since about the same time combined with diabetes in general making my bladder situation, worse, although it’s also gradual that I didn’t just realize it and put everything together until like right now. that makes a lot of sense. Basically it’s just going to continue to gradually get worse as long as I have diabetes which obviously is going to be for the rest of my life but as long as I can keep it manageable, I’ll be fine, but I won’t be surprised if I go completely bladder incontinence at some point in the next 10 to 15 years, since I’m 45 now .

 

[iatec779]

OK wow I read the beginning part of that article the abstract in the summary. So I know I have a better basic idea of why I am having issues with my bladder. being on a diabetes medication‘s since like 2018 to help control my blood sugar and also being on a glaucoma eyedrops med that is known to cause issues with bladder since about the same time combined with diabetes in general making my bladder situation, worse, although it’s also gradual that I didn’t just realize it and put everything together until like right now. that makes a lot of sense. Basically it’s just going to continue to gradually get worse as long as I have diabetes which obviously is going to be for the rest of my life but as long as I can keep it manageable, I’ll be fine, but I won’t be surprised if I go completely bladder incontinence at some point in the next 10 to 15 years, since I’m 45 now .

I’m 44 and the leakage, frequency etc all really kicked up in the last 12 months. Guess I’m not ready to just accept it may be forever yet. I go back to urologist end of next month to see what they do next.
My wife and I think it’s diabetes related but that’s yet to be proven. Maybe figure it out eventually

 

[nikthewerelion]

I’m 44 and the leakage, frequency etc all really kicked up in the last 12 months. Guess I’m not ready to just accept it may be forever yet. I go back to urologist end of next month to see what they do next.
My wife and I think it’s diabetes related but that’s yet to be proven. Maybe figure it out eventually

yeah, for me it seems like it’s become more prevalent in like the past two years or so but like I said, I think it’s been a very gradual thing that I just now realized, especially after reading some of that scientific stuff, combined with the meds that I take, it just makes a lot of sense. I don’t care whether I can prove it for sure, or not. Because it means going through a bunch of tests that I don’t really wanna have to deal with, and to be honest, what the hell Zack gonna do put the words in continent on my file. And that’s about it it’s not gonna mean that I get free diapers that are of any quality or anything like that so I’ll just keep going how I’m going. I’m also a lot more excepting of this because I started out as a DL anyways . So the transition to excepting Diapers has been a hell of a lot easier for me than it would be for a lot of other people. Even if I am officially diagnosed as incontinent, I’ll still be having to spend like $200 a month and Diapers.

 

[sport1]

https://www.med.upenn.edu/idom/Newsroom/documents/Chacko_DiabeticBladder.pdf

Mechanisms of Action for Diabetic Bladder Dysfunction — State of the Art - Current Bladder Dysfunction Reports

Purpose of Review Diabetes (DM) is a common cause of lower urinary tract symptoms (LUTS), known as diabetic bladder dysfunction (DBD). The phenotype for DBD is described in the literature with considerable heterogeneity and includes poor sensation, increased compliance, detrusor underactivity...

link.springer.com

12. Retinopathy, Neuropathy, and Foot Care: Standards of Care in Diabetes—2023

The American Diabetes Association (ADA) “Standards of Care in Diabetes” includes the ADA’s current clinical practice recommendations and is intended to pro

diabetesjournals.org

These were a few of the studies that better helped me understand what to expect from my bladder going forward with diabetes.

Best of luck and wish you well with the management.

I've been in the same boat for over 30yrs.