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mysterious bladder problems

hmnr asg

Senior Member
Messages
558
Hello everyone,
I have recently been having difficulty urinating. I ended up in ER, then urologist and finally a cystoscopy procedure.
Now, this is where things get weird. The report of the cystoscopy showed no issues, no enlarged prostate or urethra issues, BUT it noted this:
"Patient surprisingly has some moderate trabeculation of his bladder".

Now, I haven't had any urination problem until a month ago and the doctor said this develops over years of obstruction of the urine. But he had no explanations why this would happen.

Given that im only 41, I was wondering if CFS could have been the cause of this issue, indirectly: inactivity, autonomic nervous system issues etc.

I was hoping someone could have some answers for me?

ps they put me on flowmax at the moment.
Also, my Post void residual has fluctuated during the last month from 350 - 200 cc. All blood work is normal. Im currently taking Lyrica and cymbalta and occasionally clonazepam.
 

lenora

Senior Member
Messages
4,913
I'm a whole lot older than you, but something similar happened to me over the course of about a week. I'd never had bladder problems but they descended suddenly.

With me, it was a feeling of having to urinate frequently....something common in our world. I knew that an osteopath who specializes in myofasical problems (or acupressure) can work wonders in helping this....just by adjust of the hip/pelvic area utilizing the legs and bladder muscles. If you can find such a person, please try.

In the meantime I fell again and ended up with pelvic fractures. I can hardly wait until I'm able to have an osteopath work on this problem again. It's a simple maneuver, my husband has learned it and we've both forgotten it (these things happen). A chiropractor is not the same and I wouldn't recommend going that route.

Also, Kegels may help....I don't know, but they certainly can't hurt as they're non-invasive. I'm working on them now. I also don't have beverages after 3:00 p.m. (and yes, we can adjust to it). A very hot day is something else...I spend considerable time outdoors, but come inside when the temp. starts to rage (I live in a hot climate).

I wish you well. Yours, Lenora
 
Last edited by a moderator:

hmnr asg

Senior Member
Messages
558
Could it be a side effect of one of the things you are taking?
Thanks for your reply.
I really doubt it because, the doctors have checked and so did i. Also my fiancee is a pharmacist.
Also, the thickening of bladder happens over many years. I just started duloxetine maybe 3 years ago and Lyrica even more recently.
 

hmnr asg

Senior Member
Messages
558
I'm a whole lot older than you, but something similar happened to me over the course of about a week. I'd never had bladder problems but they descended suddenly.

With me, it was a feeling of having to urinate frequently....something common in our world. I knew that an osteopath who specializes in myofasical problems (or acupressure) can work wonders in helping this....just by adjust of the hip/pelvic area utilizing the legs and bladder muscles. If you can find such a person, please try.

In the meantime I fell again and ended up with pelvic fractures. I can hardly wait until I'm able to have an osteopath work on this problem again. It's a simple maneuver, my husband has learned it and we've both forgotten it (these things happen). A chiropractor is not the same and I wouldn't recommend going that route.

Also, Kegels may help....I don't know, but they certainly can't hurt as they're non-invasive. I'm working on them now. I also don't have beverages after 3:00 p.m. (and yes, we can adjust to it). A very hot day is something else...I spend considerable time outdoors, but come inside when the temp. starts to rage (I live in a hot climate).

I wish you well. Yours, Lenora
Thank you Lenora for your response. I will try to find an osteopath. Currently im living in the boonies but hope to go back to civilization some time this year (got dragged here by my fiancee for her job).
I am sorry to hear about the pelvic fracture. I hope you find some relief!
 

keepswimming

Senior Member
Messages
327
Location
UK
I'm having the opposite problem, I'm suffering with mild incontinence. I have tried kegal exercises including using an electric pelvic floor toner but it doesn't seem to be helping. Some ME/CFS lists of symptoms include urinary problems although I haven't come across many personal experiences. I plan to go to the doctor about it soon, however I'm hesitant as if it's connected to CFS I doubt they will know anything about it. But I suppose I should get any other reason ruled out. I have noticed it seems to be worse some days than others, I wonder if its connected with the ups and downs of CFS but its hard to tell. I do notice its worst if I'm doing something which is a big energy drain for me, such as socialising. I'm only 29 and I've never had children, I think it's probably connected to CFS.
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
Hello everyone,
I have recently been having difficulty urinating. I ended up in ER, then urologist and finally a cystoscopy procedure.
Now, this is where things get weird. The report of the cystoscopy showed no issues, no enlarged prostate or urethra issues, BUT it noted this:
"Patient surprisingly has some moderate trabeculation of his bladder".

Now, I haven't had any urination problem until a month ago and the doctor said this develops over years of obstruction of the urine. But he had no explanations why this would happen.

Given that im only 41, I was wondering if CFS could have been the cause of this issue, indirectly: inactivity, autonomic nervous system issues etc.

I was hoping someone could have some answers for me?

ps they put me on flowmax at the moment.
Also, my Post void residual has fluctuated during the last month from 350 - 200 cc. All blood work is normal. Im currently taking Lyrica and cymbalta and occasionally clonazepam.

Happened me too and still does if I let it.

When my bladder goes cfs get worse
I just dump all fluids. I think blood volume goes down cos POTS goes up.
Had the cytoplasty as well. Not a nice experience
It was clear but urine showed blood. Basically inflammation

I narrowed it down to caffeine drinks....tea and coffee.

Drink only sparkling water for a few days it goes away and you will feel much much better then do re introduction diet for your fluids.
Black coffee wipes me. But I can take decaff no issue.
Totally bizarre.
Had to switch to decaf tea as well.

If I bring them.back it starts again. It's a very simple exclude for me...

I'm 48 male
 

hmnr asg

Senior Member
Messages
558
Happened me too and still does if I let it.

When my bladder goes cfs get worse
I just dump all fluids. I think blood volume goes down cos POTS goes up.
Had the cytoplasty as well. Not a nice experience
It was clear but urine showed blood. Basically inflammation

I narrowed it down to caffeine drinks....tea and coffee.

Drink only sparkling water for a few days it goes away and you will feel much much better then do re introduction diet for your fluids.
Black coffee wipes me. But I can take decaff no issue.
Totally bizarre.
Had to switch to decaf tea as well.

If I bring them.back it starts again. It's a very simple exclude for me...

I'm 48 male
We are both too young to be having these issues. Sorry about your cytoplasty exprience. I had a cystoscopy which is just putting the scope in there and it was awful! it made my colonoscopy feel like a walk in the park.

What about caffeine pills? is that the same thing as drinking coffee? i literally cant function without stimulants :(
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
We are both too young to be having these issues. Sorry about your cytoplasty exprience. I had a cystoscopy which is just putting the scope in there and it was awful! it made my colonoscopy feel like a walk in the park.

What about caffeine pills? is that the same thing as drinking coffee? i literally cant function without stimulants :(

This disease not care about age
Don't need caffeine at all. You get used to decaf.

Volume is crucial. So it's not about the caffeine amount alone. E.g. a large Americano will fck me up but espresso wont.

but I can get adrenaline surges with them....make sure you are drinking lots of water same.time so its dilute effect when hits bladder.

If you need caffeine so badly your adrenals must be so low. Pregnenolone a good job for that. 100mg a day.. makes you quite...am what's the word...horny. don't believe all that bollicks about making you fat. We are getting fat anyway cos we can't fckin exercise. Will give you great hormone support.


Yeah regards cystoscopy rough experience. Had a vasectomy few years back. It was a joy compared to this. I mean a 1mm diameter camera and 0.5mm bore was never good maths
 
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Messages
12
I'm having the opposite problem, I'm suffering with mild incontinence. I have tried kegal exercises including using an electric pelvic floor toner but it doesn't seem to be helping. Some ME/CFS lists of symptoms include urinary problems although I haven't come across many personal experiences. I plan to go to the doctor about it soon, however I'm hesitant as if it's connected to CFS I doubt they will know anything about it. But I suppose I should get any other reason ruled out. I have noticed it seems to be worse some days than others, I wonder if its connected with the ups and downs of CFS but its hard to tell. I do notice its worst if I'm doing something which is a big energy drain for me, such as socialising. I'm only 29 and I've never had children, I think it's probably connected to CFS.


I have difficulty urinating, did you manage to solve your case? if yes how?
 

keepswimming

Senior Member
Messages
327
Location
UK
I have difficulty urinating, did you manage to solve your case? if yes how?

Only to figure out its probably CFS related as I suspected. I went to my GP and an incontinence clinic, they ruled out muscle weakness or urge incontinence. They believe it's to do with my CFS and so do I - the incontinence nurse suggested it may be a fight or flight response, as it usually happens when I'm doing things that cost me a lot of energy, and my body is having to work hard. That makes sense to me. I've not figured out anything that helps, I just wear incontinence pads when I'm in situations I know it's likely to happen. Sorry I can't be more helpful, however if you're having problems it's probably a good idea to get checked out as it could be a symptom of something else.