Wow this was just the information I've been looking for. Terrific read Quix with your usual added humour. :-)
I have the frequency thing going on & recorded 16 times yesterday with possibly missing some along the way. I have the urge to go & really really have to go with sometimes not quite making it. I have had bladder problems since my 20's when I used to not be able to go at all which meant a trip to the ER to get a catheter inserted. I don't have this problem more recently.
I have had the reoccurring UTI's in the past with retaining after I void but this seems to have improved greatly. I had urodynamics done back in 2007 & I do remember comments such as I didn't have a regular flow & retention but I don't have the report to know anything further.
I feel like my bladder has probably shrunk from all the mixed signals over the years & now I only need to have a little bit of urine to send me off to the bathroom. I have tried many of the things like toe curling to hold on for longer but this is really just increasing my chances of having an accident. I also feel quite uncomfortable & so I have a desire to just go to relieve myself. My flow is still up & down but I've had that for so long it's part of me now.
I actually don't think my problem is totally neurogenic but probably the miss information from my CNS has taken me to a place of problems I may not be able to solve. Anyone heard of bladder stretching lol. I'm not up for anymore medications at this stage but I will probably have further testing once I can get past the wait list at the hospital.
Thanks again for all that information. It's very much appreciated.
Karry.
Well, stay in your corner because I busy in my corner twiddling my lips.
Normal amount of fluid to retain in the bladder after a void is about 100cc or less.
But, now I am totally confused about the whole thing.
So I will sit in my corner and twiddle my lips, making little blurby noises.
q :((
Thanks for your earlier responses. I thought I had a neurogenic bladder but the uro (who seemed totally perplexed by the findings) did not. My neuro never labeled it as such but did ask me what the uro told me about my bladder. Neuro's big concern was Ess's comment on UTI's but those have not occurred recently(past year and an half). The uro's big concern was the ability to cause contractions by stroking the sacral area...he kept saying that's just not right...be sure and tell your neuro. I did tell him and he just shrugged his shoulders.
As for not emptying my bladder, on the initial visit before the urodynamics, he did a bladder ultrasound for volume- 48 cc. I had voided about an hour before and felt no urges. He stated that would be a normal level.
Also, what the dingbat uro didn't recall, obviously, is that I take a diurectic along with other hypertensive meds. The too much fluid intake was wrong. It was just the fact that I had not taken the evening dose of diurectic the day before I started the voiding diary; so therefore I had a large output. The purpose of the uro-dynamics was ,in part, to ascertain if the bladder spasms I was having had a connection to the diuretics.
At least he couldn't mess up the computerized readings regarding the EMG portion. He received pure data. His interpretation just seems way off.
I guess that this is as good as any place to give my final thoughts on Continence Physical Therapy. I know a lot of you have had your docs suggest it. I suspect that some of you have been hesitant to do it, which is why I wrote my little essays on the experience.
First off, I found that most of my problems were a learned response. I do have neurogenic problems, in that, my sphincter is too hypertonic (it's spasming) and my bladder is secondarily irritated by it. The bladder and the sphincter don't work smoothly together. My problem was urge incontinence. I was totally convinced that the whole problem was neurologic and was offended and embarassed when the PT told me there was a behavioral component.
But, I am doing the program and walkin' the walk. She was right. By, learning to retrain that horrible insistence that I get to the bathroom NOW, most of the problem was solved. I rarely get that insistent scream to run. And I am slowly gaining some undercarriage strength. I do believe that the numbness and weakness I have in the nether regions is mostly neurological, but I am going to get it as strong as I can. I have graduated to a 2/5 strength.
The point that I wanted to make here for you is this: The first problems I had were likely the neuro ones. But, having had an accident - which to me was horrifying and totally a blow to my pride - I began overreacting to my urges to pee. I would rush to the bathroom to prevent the embarassment. I became like Pavlov's dog. The bell would ring and I would react. This became ingrained, and the urges grew all out of proportion. This could happen to anyone. The reinforcer was a strong negative one and it was intermittent - this is the strongest kind of reinforcer if you remember back to Psych 101. My life truly was at the mercy of my tantrumming bladder. What should have been little sensations in the background took center stage and dominated my life.
Now that I have learned to curb my enthusiasm, so to speak, life is truly much better. Not all the way, but leagues ahead of where I was. Somehow I truly did think I was too smart/savvy/well-adjusted - whatever - to let a thing like this happen, but in retrospect, I see how it all makes sense.
It appears to me that the women who go into this PT specialty are those that like and respect women and believe strongly in empowering them. I would encourage any of you for whom this has been suggested to try it. Even if it helps just a little - well, that would be great. At no time did I ever feel embarassed or violated. It was like a friend was teaching me a skill.
I didn't report on it, but the last skill set they have me working on is strengthening some of the core hip muscle groups, like the hip adductors and the abductors. These are the muscles that pull the knees tightly together and the ones that pull them apart (like against a therapy band). Strengthening them has a synergistic strengthening effect for the muscles of the pelvic floor.
There are other parts to the PT that I apparently didn't need or qualify for. There really are little Kegel barbells and there are electrical stimulation techniques.
And that is the end of my seemingly endless essays on Continence Physical Therapy.
I hope it was all entertaining and enlightening and in a nutshell.
Quix
Well, we know your urologist has a very narrow definition of "neurogenic bladder." It is the classic "floppy" bladder that can't empty. My question to him is, "You have shown that Ren has abnormal fucntioning of her bladder. This would be due to abnormal neuro signals. If this is not neurogenic, what would you call it?"
My answer is that any malfunction of the bladder that is caused by abnormal nerve signals - too weak, too hypertonic, out of sync, whatever - is a neurogenic state. Neurogenic means arrising out of the nerve function. Mine is the most accepted definition.
Your bladder is "spazzing out." It can be caused to contract abnormally with stimulation of the some of the sacral nerves. You have incomplete voiding and thus, as ess says, are at risk for UTIs. So, yes, it is obvious to me that you have a neurogenic problem.
In the end, it doesn't matter what his terminology is, as long as he treats it correctly. the goal here is to achieve full emptying of the bladder. So let's see what his plans are.
Ess - the urologist recommended decreasing her intake by one third.
Quix
Hey, Ren. Maybe you should make this a new post. I'm sure no expert on this, but I've been through the tests, and now have to cath. I can't understand why your doctor says what he does.
If you're not emptying your bladder completely, the possibility of UTIs is great. He says you have a dysfunction, says it's not urogenic, so what IS it, doc? A lot is abnormal about your report.
And what's with the idea that you already take in excess fluid (what's his idea of excess?), but you need to take in 1/3 more? What's wrong with this picture?
Since Quix is our 'Micturation Queen,' and champion of the sandbox, I hope she'll comment here. If not, please post again.
ess
bump
PS My neuro didn't seem concerned and did not label it as neurogenic but did mention the InterStim for which I reiterated I have no interest in pursuing.
I received the report from the uro-gyno I saw. His report states:
EMG: Very high EMG baseline with versatility, limted reactivity. No relaxation noted with void.
URODYNAMIC FINDINGS: Hypersensitive bladder of increased capacity and normal compliance. Detrusor overactivity provoked by rubbing the lower sacrum but not by traditional maneuvers. Patient also with excess fluid intake. No evidence of stress incontinence. Voiding dysfunction with incomplete bladder emptying. No evidence of bladder outlet obstrucion. No evidence of neurogenic bladder.
SUGGESTIONS: Pt. should decrease her fluid intake by a third. If symptoms warrant, consider InterStim sacral neuromodulation.
Ok, from what you wrote, I do have a neurogenic bladder correct? With the increased tone, etc
Thanks,
Ren
Thank you for this. I had to pee just reading it!
I am asked to do an bladder ultrasound each time I'm at my neuro. I always refuse.
Maybe it's time to have it done.
bump for the complete story about neurology and urination and incontinence
Thank you Quix!
I went to my old pcp about 6 wks ago. She said that I had blood in my urin, but no bacteria. She gave me some antibiotics anyway. Then a week later I had the iv steroids. I have made an appointment with a new Inturnest, but it is not until May 5th.
Quix: I like "floppy bladder" better...makes me giggle! :)
Lulu: you are right about not being embarrassed about these things. For me, it is partially being embarrassed but also being a bit intimidated. I just have to remember that like you said, this is what they deal with everyday, so there isn't any reason to be embarrassed.
Thanks for the guidance!
Chrisy
I did want you to note that in this article the definition of "Neurogenic Bladder" is what I said it was in the earlier post. It does NOT have to be just a floopy or weak bladder.
I'm feeling fine now.
Yes, Lu, I caught that, too!
Oh, and for everyone. The term "floppy bladder" is my own. I doubt any urologist would know what it means. I just thought it was descriptive. They do sometimes use the phrase "flaccid bladder."
q
Thank You so very much for addressing each of us and making time when you must not feel well either!! Lu, good one we kept it "flowing" heheha LOL
Hopefully we will all get the needed help.
Tracy
Hi everyone,
An undercurrent to this discussion is how embarassed we are to discuss this with our doctors - many of you may remember I out and out lied about not having an incontinence problem the first time I met my neuro. I then had to fess up the truth very soon after.
I hope you can get over the embarassment and talk about this openly. These doctors have heard this before and it doesn't bother them to talk about urination. Just be forewarned that very few of them will deal with this problem and will send you on to a urologist or urogynecologist.
My urogyno has a good saying she learned from her uncle - if you are a hammer you only look for nails. Translation: Her job is to take care of those areas of her specialty and nothing else. The same goes for all our other doctors here.
Thanks again Quix for the delightful, and to eveyrone else who has kept it flowing.
Lu
Thank you so much for taking the time to address each of us! I am frustrated that the neuro did not address my bladder issues when I was at the Mayo clinic in January.
I am seeing my new PCP on March 28th and will definitely be speaking to her about ALL of my symptoms with the hopes that I can get some answers to what is happening to me.
Chrisy
Bio - I am wounded!
I am going to discuss some possible scenarios for the different problems (other than with my humor) that people brought up. But, this should NOT stand in place of telling your PCP or neuro about them.
Leaking a small amount everytime you stand up. Tracy and several people complained about this. (And yes, Tracy, this should be mentioned to your PCP and neuro.)
This is usually a mechanical problem, meaning it has to do with the anatomy and not malfunction of the nerves. Something happens to change the situation at the urethra when you stand.
1) Kathy brought up a common one was a small diverticulum (pouch) coming off of the urethra. It fells with urine while you are peeing and then is squeezed when you stand expelling just enough urine to make you mad. Yes, a nutshell would work here. I have taken several large washcloths and cut them into small 4" squares. Then I use these to catch the "after leak" and this solved the problem.
2) Ess is correct that constipation can cause this problem. The stool sitting in the rectal vault shares the same space as the bladder. The pressure from hard stool can cause some urine to not reach the urethra until we stand up. When this is the cause the leakage is intermittent. Sometimes it's a problems and some not. If we are aware of being constipated we can begin to see if that is causing the problem.
Constipation can also cause us to urinate more frequently because the pressure on the bladder doesn't let it hold as much. Or the constipation may prevent some urine from being expelled at all so it just remains in the bladder. This can be a cause of UTIs in all ages. I frequently saw it in girls in my practice.
3) The shape or position of the bladder may allow some urine to not reach the bladder and when we stand up it dumps toward the urethra. The urethra is still in "pee mode" and releases the urine as we stand up. This may result in the release of a little or a lot of urine.
It is not unusual for women with or without MS to have to learn to wiggle around to get all the urine possible out. They may have to lean to the right and left, rock their pelvis back and forth and then stand up and sit back down. If this is sounding a little like a "lap dance" then you have the picture.
Another common problem is Stress Incontinence. This is often due to poor support of the pelvic floor muscles. The bladder may be full or not full enough yet to have signaled the need to find the "socially appropriate place. The act of laughing, coughing, sneezing, jumping, etc causing the pressure in the abdomen to rise. In a perectly normal person there is also a tightening of the pelvic floor muscles when we do these things, along with the tightening of the shpincter. This causes pressure on the bladder as if it were contracting (but its not). The sphincter is weak and the perineal muscle is weak and can't hold the urine back under the increased pressure and we leak. This is a very shortened explanation of stress incontinence.
The more neurological problems:
Chrisy (goofysmom), Kathy complained about the urine flow starting and stopping. The medical term for this is hesitancy. This can be from one of two problems or a combination of the two. The urinary spincter may suddenly spasm closed mid-stream. This will stop the flow. Or the detrusor muscle of the bladder may relax so there is no pressure to allow the urine out. Mostly this is called Detrusor Sphincter Dyssynergia - lack of a proper coordination between the two muscles. The two need to act in synergy. The sphincter must relax at the same time the bladder muscle contracts.
Guita_grrl - It sounds like you had an episode (the "Not so fast!" one) of having the two muscles being out of sync with each other.
Wobbly - Losing it all without any signal is pure incontinence. Somehow the whole "signal to the brain" thing got sidetracked. This MUST be reported to your neurologist. I would tend to blame the Pontine Micturition Center, but it could be a problem in other places in the whole pathway.
Urge Incontinence - This is when the urge hits suddenly and let's you know you need to pee NOW! This may be coupled with frequency. You spend your life acting like someone trying to steal second base, afraid to get your foot away from the bathroom threshhold. The leakage may begin immediately or during the rush to the bathroom. Often it occurs at the arrival at the toilet itself as you frantically try to remove all necessary layers. Or the classic one is that the leakage occurs as you fumble to get your key in the front door.
The typical problem is that the bladder is spasming like crazy, and the spasms are enough to overcome the tightness of the sphincter. There is also likely a part of the problem that involves the sphincter relaxing too early and allowing the leakage. This is a classic case of Overactive Bladder. Opie, you are correct in stating that your bladder is just too sensitive to having a little bit of urine in it.
It is important for people with urge incontinence to get a urinalysis to make sure they don't have a UTI (urinary tract infection). An infection will cause identical symptoms to Overactive Bladder. A person can have a low-grad urine infection without feeling ill or without burning - just enough to keep the bladder in spasm.
Ess has Urinary Retention, the situation that worries the docs the most - a bladder that just retains the urine and does not send proper signs to the brain that it is full. Or if it does, the detrusor muscle is "areflexic" and cannot contract to expell the urine. This may be coupled with a sphincter in spasm. The concern here is that the bladder my overfill and push the urine up the ureters. These are the tubes that drain urine from the kidneys to the bladder. If the urine backs up into the kidneys it will cause kidney damage. It happens more easily in men, but can happen in women also. Ess they have done ultrasounds of your kidneys or an IVP haven't they?
So, this is how malfunctions of the urinary system can cause the different symptoms and problems we have. I will do a new post on what is happening to me in my Continence Physical Therapy.
Quix
I, thankfully don't have leakage problems. For a year of so, I could not relax the sphenctor. (sp?) Now, I feel the urge, hold it, go. BUT soon after, It starts again. As if my bladder is too sensative. Just a little, and I have got to search for the nutshel or pot, or borrow the kids diaper. LOL again, and again, and again. It is really bad when I go to bed.
Kathy, for a friend of mine, her chronic constipation was at the 'bottom' of her slight leakage. This makes sense to me, since if the bowel gets rather impacted it can impinge on the space the bladder normally takes up. Hey, move over! And problems result.
I think it was you who posted the world's best natural constipation remedy, wasn't it? Or called something like that. Bran and prune juice and other things that can be frozen into ice cubes and added to tea or other drinks. I sent my friend the recipe and it has really helped her. Haven't heard any more about the problem since then.
For me, based on my uro report, I seem to have floppy bladder, coupled with a little confusion in the urination headquarters. Either the bladder would contract and the sphincter just sat there, or vice versa. But I've always been really uncoordinated. :-)
ess
bumping this up for Quix - wondering her thoughts on what we have all posted so far.
Hugs,
Chrisy
Was that fun, or what? :o) Thanks, Quix, I thoroughly enjoyed the explanation and the giggles. A friend called when I was reading it; I read her part of it, and I think she laughed so hard she may have been looking around for a nutshell!
I also have the stop and start flow of urine, and some leakage. My awesome urogynecologist did a lot of testing, and couldn't find any reason for any of my probems, though she said that the reasons don't always show up right away in a neurogenic bladder situation.
One of the suggestion she had for the leakage was a possible diverticulum in the urethra (little pocket in the side of the tube that the urine comes out through) that could retain some urine, which is then pushed out when I stand up.
I had a pelvic MRI with contrast, and it didn't show any diverticulum. It was interesting to see in the report " There are several T2 hyperintense lesions withing the lower uterine segment which is likely to represent small nabothian cysts." Those are just a benign incidental finding, but I thought "gee, I've got glowing spots at both ends!" :o)
Kathy