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youngin
03-08-2004, 04:59 PM
I'm trying to get a good understanding of these terms, because I think they are different. Some people have frequency because their bladders are literally shruken and cannot hold a normal amount of urine. There is an actual physical limitation as to how much urine can fit into their bladder. But then there are those people who have normal size bladders but still have terrible frequency. Their bladders may be able to physically hold a normal amount of urine (for instance, with a hydrodistension, the bladder stretches as large as it should), but the URGE to urinate occurs when only a small amount of urine has entered the bladder, eventually forcing the person to urinate long before they should have to. Thus the fact that they have a normal size bladder is rendered meaningless - practically speaking, it is the same as having a shrunken bladder; the full size of their bladder cannot be utilized because the urination urge always forces them to void long before a normal amount of urine has time to collect in the bladder. Does anyone get what I'm driving at here? I just want to have a better understanding of this - because it sounds to me like there is a difference. I hear the term "bladder capacity" used a lot, but have never known whether people are referring to those with actual shruken bladders or those who just cannot hold a normal amount of urine before urinating. Please comment. Thanks.

ICNDonna
03-09-2004, 12:54 AM
Frequency is not always related to bladder size. Urine can be an irritant, especially if we've ingested a "problem" food. So the minute any urine hits the bladder, it creates the need to urinate. I know this is what happens to me. And if I take something that makes the urine less irritating, I can go longer before the need to urinate hits.

Donna

Trishann
05-15-2006, 06:12 PM
I do have a shunken bladder, but I know people with normal bladder size still have to urinate frequently too. I think that is part of IC, because the bladder is damage. I would not even begin to think that you are in less pain than I am. IC is painful. I am glad we can share with others that have IC, because maybe we can learn and be able to find answers. For instance, I did not know normal bladder size can have low urine output. But that is common sense, because if you are urinating more that means less output at a time. Thanks for sharing your post with us.

yvette
05-16-2006, 01:59 AM
Youngin: I think you're on the right track, I do agree with Donna--its more of an irritant things with some people (like myself).

My capacity is fairly normal....but my inclination "to go" is frequent. Also despite the capacity being somewhat normal....the bladder is a big enough size....

BUT

even under anesthesia it has been seen that the muscle itself gets irritated upon filling...the last C&H I had done: the uro had to pinch my urethra shut just to check capacity. The muscle involuntarily was starting to spasm, trying to push out the liquid.

So my bladder volume wise-should be able to hold enough.
However, its so easily irritated, it gets angry and revolts ;)

Do that help you any? :)

~*~Christine~*~
05-16-2006, 04:02 AM
I do have a shunken bladder, but I know people with normal bladder size still have to urinate frequently too.
When the bladder "shrinks" it can still be dilated to that of a regular bladder (500-600cc's).
My old uro once explained this to me after a hyrdo/cysto that our [ICers] bladders can frequently "shrink" since we rarely, if ever, hold enough cc's to retain its regular size. It's like if a balloon starts to lose air, it shrinks, but when air is put back into it returns to its regular size.
So, the size of our bladders, for those of us with IC, doesn't seem to make much of an impact on our symptoms since we're not using most of the bladders storage capacity anyways :toilet:

sweetangel2080
05-16-2006, 10:31 AM
I used to think I had a small bladder too but recently experienced a week long remission after ayurvedic medication and realised I could up to 300ml - nowadays back to 50ml and urgency!

Trishann
05-16-2006, 12:39 PM
You all talking about bladder size, do you know if there is a difference between a shruken bladder and a stiff bladder.

~*~Christine~*~
05-16-2006, 05:11 PM
You all talking about bladder size, do you know if there is a difference between a shruken bladder and a stiff bladder.
I did a Yahoo! Search for "Stiff+Bladder" and it said that an IC bladder can become 'stiff' due to scaring of the bladder wall (GAG layer).
That would make sense, it's like if you expose your feet to the elements of the ground without shoes for protection you will eventually develop callus's

This probably explains why I and many others bleed bedpans full of blood after hydros, since it's like having really dry lips and than smiling, your lips will crack all over

Trishann
05-16-2006, 05:38 PM
Thank you for explaining about the bladder. The doctor said I had a stiff bladder and it will not stretch. He said if I don't have surgery, the bladder will keep getting stiffer to the point the bladder will not hold no more. There are days I think I will keep my bladder and then there are days, I am really to take it out. I guess I wonder sometimes is there any possibilities that the bladder can become unstiff or is it to late. If there is a possibility the bladder can heal, I will want to wait but if not, I can not keep living like this, something needs to be done. Again, thank you for the information.

~*~Christine~*~
05-16-2006, 05:50 PM
If by surgery you mean a hydrodistention that prbably would not help unstiffen the bladder, if anything, it would probably make it stiffer since every time it is streched it breaks open wounds causing the bladder to develop thick gag layer, like a callus.
There are certain instils, like silver nitrate, that are supposed to "burn" off the bad tissue and allow healthy tissue to grow from underneath. Though, they don't seem to be used anymore, probably since they are extremly painful (or so I've heard)

Besides that, I don't think there is anything that can be done to remove the tough tissue, unless the bladder, for some reason, goes into remmision allowing the bad skin to disinegrate and allowing the healthy tissue to grow

Trishann
05-16-2006, 06:02 PM
The surgery the doctor is talking about is removing the whole bladder. This is why I wonder if there is any hope for the bladder to become unstiff. Sometimes it is even hard to walk around. Maybe I'm just hitting my head against the wall hoping I don't need surgery. Maybe I need to look at it a different way, the surgery might give me a better life. But hearing about the complication of the surgery, wow, scary.

~*~Christine~*~
05-16-2006, 06:39 PM
ahhh okay. My uro actually refered me to one of the best bladder removal surgeons in Canada, located in downtown Toronto, since I'm through with this as well.
If you feel that it can't get any worse and nothing is helping it can be an option for you as well, but like you said, we all don't want to let go of the hope of a cure that might save our bladders, though waiting can be a gamble since that cure may never come, or may take many years/decades to be found :(

Judith56
05-17-2006, 12:50 PM
Okay after reading the original question I want to clarify the answer to what I think you are asking. Bladder size and capacity are pretty much one and the same. BUT as I see it tehre are two types of capapcity. One is what you bladder will hold under anesthesia, the other is functionalcapacity- the amount that you can hold while you are awake- these two measurments are usually very different whehn it comes to people with IC. In an IC [patient while under anesthseia they can get your bladder ot hold more than if you were awake. When you are awake you are sensitve to feelings of needing to go urinate and that amount that you can hold while awake is your functional capacity. I did end up having my bladder out and when I did at the time my functional capacity was 30 cc's or 3 ounces. I forget what it was under anesthesia I do know it was not very much at all. When the bladder gets stiff what is happening is that all the scar tissue constricts the bladder making it unable to stretch as the bladder fills with urine. Hope this helps to clarify things. Judith

Mimilopez
11-09-2007, 06:27 PM
I have been reading posts on this network for a couple of months. The size of my bladder is exactly what has me confused....or, it seems my urologist confused.

After half a dozen UTIs in the last 5 months, and three different antibiotics, my regular doctor said I was resistant to the antibiotics. I saw my urologist (have been seeing him for a year due to stress incontinence....have had that for about 4 years and seen another urologists prior. I have been taking Detrol for the past year....didn't help tremendously with the stress incontinence, but a little.)

My current urologist listened to my symptoms and then said he suspected IC. He told me to start taking tremendous amount of Vitamin C.(???)vWhen I told him about painful intercourse, he said that has nothing to do with IC! (That's when I started researching IC). He scheduled an ultrasound and for one month, he had me go in each week for four weeks, to leave a urine specimen. When I met with him after the month, he said I had a UTI again, but my ultrasound showed my bladder to be of normal size and capacity, so he said I didn't have IC. When I asked about my symtoms, he didn't seem to know about anything I had learned about IC! He is older, but he is the head of USC Transplant Center. He was so weird about it.

Anyway, He just prescribed twenty days of Cipro. I was stunned and went back to my reg doctor. By then, I began having worse bladder spasms, frequency, back ache and low grade fevers. My reg doctor prescribed Levaquin (sp?) and scheduled a CT scan of my stomache and pelvic. One week later, I still feel awful, pain, fever,etc. but she said the CT showed all is normal.

Does this mean a CT scan and/or ultra sound don't show IC?
Does this mean ALL those who have IC have "small, shrivled bladers" like the uro said?

One thing I really wonder about is two years ago, the first urologist, who after a cystoscpy (sp?) showed no reason for stress incontinence performed silver nitrate instillations for a month to help with stress incontinence...could that have caused this condition??

I am waiting for a referral to a new urologist and in the meantime, elimiating lots of stuff from my diet.

I am in pain, and frustrated because all of these health professionals seem to be stumped or guessing about what the heck is wrong with me.

Feedback?

ICNDonna
11-10-2007, 04:03 AM
Some people with IC have very small bladders, others have bladders of normal or even larger than normal size. A CT scan or ultrasound will not diagnose IC.

No, all people with IC do not have "small, shriveled bladders."

I hope you get to see a different urologist soon.

Donna

Sally939
11-10-2007, 06:19 AM
What can we do to stop our bladders from becoming stiffer? I take all the meds and follow the diet. I thought most of the meds just put a band aid on the symptoms. I know if elmiron works it does help protect the GAG layer. I am following the diet to an extreme but am trying to add. So a food flare here and there will happen. Every time we flare regardless of stress or food or whatever are we making our bladder stiffer?

born2swim
11-10-2007, 06:26 AM
My doctor told me that my urge to urinate (constant) is a pain response. They suspect my bladder is saying "ouch" and spasms while my brain reads that as "I have to pee". My bladder couldn't hold more than 500cc's, but the thing is, if you void small amounts for so long, you can effectively shrink the bladder. My bladder won't hold more than 100cc's awake without being incontinent. From 50cc's to 100cc's the urge is so bad I nearly vomit and do lamaze breathing. It isn't painful, but the urge is just so strong, I can't tolerate it...

gigisgirl
11-10-2007, 09:54 AM
I had a hydro done in 2004 when they did my hysterectomy and the dr. started to fill my bladder. He started with 300 and never got there. At 240 the bladder wouldn't take any more fluid so does that mean my bladder is stiff? That was of course under general anesthesia, just going by trying to hold it as long as I can I never make it past 75cc.

mcdoll
04-01-2008, 08:00 AM
I'd love to know who the surgeon is in Toronto and how he can be contacted. I myself would eventually like my bladder removed, but it's also for a friend of mine who is suffering horribly and has been for years and can't find a uro willing to remove her bladder in Montreal.

mcdoll
04-03-2008, 06:40 AM
from what I've heard, silver nitrate was very bad for the bladder, in addition to being painful, which is why they've stopped using it. It literally strips a layer of your bladder, which when you have ic is a really bad idea! I'm no doctor, but I would think it is possible that silver nitrate damaged your bladder and contributed to your current condition. The doctors you were seeing obviously are not very well educated on ic, because many peoples bladders will be normal sized with ic, the only way to know if that's what's wrong is a cystoscopy with hydrodistention under general anaesthesia. The symptoms sure seem to fit though.

Mothergoose
04-03-2008, 09:47 AM
My Dr. gave different info I think it was born to swim he told for people with normal bladder function normal capasity was around 300 cc, give or take a bit, they get the urge to go before this but can hold on till it is the right time for for them to go.
This is not the case for ICers I know many Icers have small capasity, probably for many reason. In my case I have a capasity of about 750 cc, but I have frequency, pain and urgency because I can't empty my bladder, probable from PFD. The bladder is a muscle and mine dosen't contract enough to empty bladder. I asked IC specilist if I in fact could really have IC when I have large capasity, he said definatly yes IC comes in many forms, that they don't know all causes or types yet.
So I think we really can't compare one person stats to anothers. IC can not be diagnosed by cat scan or ultra sound, but it can give them other information about functon.
I think that many Dr. have no idea what they are talking about, we have take what they say with a grain of salt.
Mostly some how Dr. need to be more educated about IC and it's related problems, not sure how we do this but Dr. beening educated sure would help us all.
I got a bit off track, but IC come sin many fshapes and form.
I also would like to know how do they tell, if bladder is shunk from not being used to capsity or if it is scarred, I think this would help many people to not have their bladder streached, causing pain when it probably wont help.
Mothergoose

Claredale
04-03-2008, 11:18 AM
This is a very interesting thread. Thanks Youngin for starting it.

When I had my last hydro about 10 years ago or so, my doctor told me that my bladder was very scarred and he referred me to an specialist that worked with IC patients. Back then, I didn't know to ask how much my bladder held under anesthesia, I just knew that my freq/urg was so bad that I was constantly feeling like I needed to empty my bladder. I went through several treatments and meds for a couple more years when I was a patient of Dr. Doggweiler. Then I had the interstim, which I am grateful that it helped me tremendously and even allowed my bladder to quit being so irritated, therefore alot of my pain issues decreased as well. I was happy that I could finally go to the bathroom about every 2 hours. I still had problems at night, but not nearly as pre-interstim.

Last summer, I started having problems with feeling as if my bladder was on fire and when I tried to empty it, it was like I was peeing "shards of glass". By that time it had been 19 years since I was diagnosed and 9 years or so since my IC progressed to the severe stage. Last August, my uro/gyno started me on different nerve meds, which didn't help. Then he put me on Prosed DS which after a couple of weeks, I saw a huge difference in my urgency and frequency. I even started keeping a voiding diary again and I was emptying at least 10 ounces at one time, when before I was lucky to empty 2 or 3 ounces. I was finally using the phrase my grandmother used to always say that "I was peeing like a racehorse". Anyway, I just wonder if the Prosed has allowed my bladder to heal or if it has just taken this much time after my surgery. I did have an adjustment last summer as well. Several times, it has made me so curious that I would like for my doctor to do a hydro just to see what my bladder looks like now. Of course I would never do that since I don't want to mess up a good thing. I have been at work since 8:30 this morning and I have not needed to go to the bathroom one time today. Before last summer, that was never ever the case. If I held it for more than a few minutes, I would either have retention or those mean spasms after I emptied. Now I can hold it for quite a while without aggravating my bladder. It is as if I never had severe IC. I meant to ask my doctor if I could see the report on my hydro in 1998, but he is not the doctor that did my surgery. I am sure he has my medical records from Dr. Ragi, but I just didn't ask because we were both in a hurry. I will be sure to ask him next time. I will probably need to call the nurse to make sure that my all my files are available to him. I had 2 huge files with Dr. Ragi. I just wonder if my bladder can go from scarred and shrunken to be more of a normal size.

Tracey

VickiB
04-03-2008, 02:14 PM
Interesting!

I know that in a flare I have very little (seeming) capacity, and when not flaring can go for hours.

Guess from my own past experience I lean towards Mothergoose's statement about taking any doctor's ideas with a grain of salt. A second & even third opinion can never hurt!

Vicki

ngazerro
04-03-2008, 02:51 PM
My bladder size has gone down to 500cc and I have been dxed with servere IC from my hydro, but I hardly ever have frequency. Pain is my worst issues.. My uro also explained we don't use our whole bladder anyway.

snowgirl
07-05-2008, 08:56 AM
Judith explained it well the capacity while asleep and while awake.

The mystery of IC why some people's bladders can hold 750cc under anesthesia and some 200cc but both pt's can have severe pain , urgencey and frequency on same scale? Vicky

I used to years ago hold 500cc in my 22 years somewhere now my uro does all that he can under a general anesthetic to get me to 175cc. I have not been over 200cc max for ten plus years now.

jen74
07-05-2008, 10:22 AM
When they say capacity under anesthesia, how can they really tell? I mean of course they fill the bladder, but are you saying that the bladder muscle will just let go when it reaches it's potential full and the urine will come out involuntarily? I would think this would be pretty unreliable since you are sedated for the hydro and everyone knows sedation messes with all the nerves, so how can they tell by that? My bladder capacity, I have no clue what it is. I never did a hydro, or at least not yet anyhow. I had a regular cysto and was told my bladder looked pretty awful, severe inflammation so the urogyne who did it said the cysto was enough to dx me. Besides , I cannot take pain meds or any meds due to side effects so I was not about to put myself through that and heaven forbid I ended up having extreme pain and could not take any meds for it.
As far as my capacity goes, I usually have the feel that I really gotta go and I will only get out about 7 to 8 ounces or occasionaly when I really hold it, and this means if I cannot get to a bathroom right away, I can get out 10 to 11 ounces which I believe is 330ml. I wonder if my bladder is starting to shrink due to all the chronic inflammation. How long does it take for a bladder to shrink when having IC?
Jen