Neurogenic Bladder or Overactive Bladder Anyone?

[Changexpert]

I was reading a thread on orthostatic intolerance and came across a new medical condition that may be relevant to my issue. Ehlers-Danlos Syndrome or EDS. My joints are very flexible including wrists and fingers and I just naively thought I was born with flexible joints. My lower back is very weak, especially for a young guy, which fits the general symptom of EDS. This is still my speculation as I was never diagnosed as a EDS patient, but it definitely seems plausible.

As I was digging some information about EDS, I noticed that another common symptom is neurogenic bladder. I've always had a problem with urination since I was a small kid. Most notable problems are frequent urination that gets worse right before going to bed, problem with emptying urine from bladder that happens toward the end of the "journey", and waking up in the middle of the night to empty bladder. The second problem has been the worst as it takes me at least 3 times as long as normal guys to empty out urine. This is definitely a type of overactive bladder, but I am not sure what the heck is causing it or how go about treating it... Is there any lifestyle change or supplement that would help with this? This is not an urinary tract infection and I have tried taking cranberry extract and D-manose without any success. Please share your thoughts and recommendations. Thank you so much in advance.

PS: Just did a quick evaluation that was laid on ENDF website. I can do everything except the first one

 

[Aurator]

I'd advise you to see a urologist. There may be a straightforward explanation, e.g. a urethral stricture, or an overactive detrusor muscle. Alternatively, the cause may be complex. You won't know until you get it checked out.

 

[barbc56]

Don't know if this applies to you but I was to have a procedure to remove a troublesome kidney stone. The urologist could not get the scope to reach the kidney as my uterers are narrow so I had to wear a stent from my kidney to the bladder for three months. It sounds worse than it was.

After a month or so, I had an urge to empty my bladder to the point I felt I had to go about every three minutes. Sometimes even after I urinated, if I passed any at all. I was pretty miserable. Evidently, the coil that holds the stent in place was pressing on a nerve. The doctor gave me vesicare which cleared it up.

But I absolutely agree with @Aurator. There are so many things that can cause your symptoms, I would see a urologist.

Barb

 

[ahmo]

This website is from a woman w/ EDS and mast cell issues. My periodic very urgent need to urinate I've traced to mast cells. I'm no longer experiencing this, but I found that under stressors that caused MC flares, this symptoms would as well. The link is to her post re MC, but you'll see the EDS section.
https://mastcellblog.wordpress.com/2013/11/12/canary/

 

[Seven7]

@Changexpert I also have OI, not sure if I have EDS I do not think so, But I have the bladder issues, I am female, before going to sleep I can go 20 times in a row (more desire than actually peeing). If I treat the OI during the day (midodrine, florinef, betablocker) I do not go as bad, I notice that when I am having bad OI, I go too much at night. I do not have any issues during the day.

 

[ppodhajski]

Do you drink tea?

 

[M Paine]

I am currently a 30 year old Male, since I was an adolescent, perhaps around 12, I have had issues which have varied in severity with:

• Nocturia (excessive urination at nighttime)
• Feeling the urge to urinate when there is not much urine in my bladder

Probably other urinary symptoms, but I think that covers the worst of it.

I did not connect my urinary symptoms to my cognitive, neurological and other symptoms. At the time, I thought that I had some problem specific to my urinary system.

Eventually I became fed up with my problems. I had previously complained to doctors before, but at around the age of 13 I got serious about it. I visited my doctor, and went through the basics (no drinking before bed, no caffeine, no alcohol, less sugar) and had urine and blood tested for any easily recognizable issues. Diabetes, Kidney function, etc etc. All came up pretty normal except for B12 being a bit low (which was usual for me, even though my diet is good).

I went on to visit a Urologist, they went on to test various bladder, kidney and prostate related functions. There was no sign of pathology, or any other issues. I have had urine flow tests, bladder volume tests, a camera up the urethra (not as bad as people say), ultrasound of kidneys (fun to watch).

Next thing they tried was to put me on some sort of steroid or other drug, which was intended to have an effect on the nervous system in-case the issue was the nerves being overactive... I'm sorry, but I can't recall the explanation they gave, but that can help for some people.

The next step would have been to undergo some more invasive testing, I can't recall what exactly that procedure was sorry, but I recall it was some sort of operation I think. At that point of investigation, they had to stop and ask "will this make things worse". At that point, I opted out of the investigation and the cause was suspected to be the nervous system.

It has now been a few years, and I can say for certain that the urological issues I have are related to CFS/ME. If I experience PEM (Post-exertional malaise), my urinary issues flare up. When I have swollen glands, my nocturia is bad... etc. I can now predict when I will experience bad Nocturia, and it's always when my other symptoms flare up.

My conclusion is that there is an interaction happening between the immune system and the nervous system controlling the bladder. CFS/ME is a neuroinflammatory condition, when an episode occurs and the immune system flares up, the nervous system controlling the bladder is negatively effected.

I hope that my situation helps someone else who is going through the same thing, I wish I had known that these other issues (memory/cognative issues, swollen/sore glands in neck, malaise, etc... etc..) were related to the nocturia.

I always thought that the sleepless nights were causing my other problems with tiredness. As though I was tired because I was waking up all the time. I was confusing the symptoms of CFS/ME as just being side effects of being sleep deprived due to Nocturia. In fact, I had things the wrong way around, and nocturia is not the main issue, it's just another symptom.

I find that simple Ibuprofen does wonders to help with Nocturia during an episode. I think the anti-inflammatory effects of the drug help to lessen the need to urinate and help me to stay asleep in general during such times. Take two 30 mins before bed, and another 2 when you wake up to urinate a few hours later.