Re: Re: spastic bladder

February 14, 2004

ongoing, chronic bout with insignificant bacteria in the urine culture

-- Re: spastic bladder

> I've taken Ditropan and Detrol to help control my leaky bladder.

I have

> also went through a severe bout of cystitis. I was lead to

believe that my

> bladder problems were due to going through traumatic childbirth

with stage 4

> tears and my being overweight. Who knows. My mother and sister

also

> struggle with this problem.

>

> Jen

Jen, when you say a severe bout of cystitis, do you mean an ongoing,

chronic bout of it where the urine cultures do not turn up any

significant bacteria or...?

Are you talking about recurrent infections or interstitial

cystitis? Are you still suffering from it? Have you been seen by a

urologist?

(As everyone knows I am the IC information advocate on the

board...remember, 1 in 5 " healthy " women have IC and 1 in 2 have IC

who show recurrent bouts with cystitis...)

Gentle

February 14, 2004

I underwent cytoscopy twice and was on high powered drugs for about six

weeks, and I apparently overcame that bout. I don't think I am experiencing

a flare up of this problem at this time, but I do have urine leakage if I

run, lift, sneeze, laugh, etc. It is not near as bad as it was prior to

diagnosis. I was wetting the bed at night and had outright wet my pants in

public when I finally returned to the doctor and complained again. I do

believe my weight has an effect on my problem. When I weigh less, I have

less of a problem. I have no pain at this time and didn't during the above

mentioned bout, and I haven't felt like I have an UTI for quite a while.

Thank you for the link. Ahhh, more reading. <g>

-- Re: spastic bladder

> ongoing, chronic bout with insignificant bacteria in the urine

culture

Aha! Then there are at least THREE of us on this board with

Interstitial Cystitis!

(You know that is the name for what you have, right? Has any doctor

ever told you, " what you have is called interstitial cystitis? " )

Has your urologist put you on Elmiron, Atarax or Elavil? Have you

tried DMSO treatments?

When was the last time you saw a urologist? (Or do you only go to a

general practioner for this?)

Please see this link for WAY more information about what you have

and how to treat it so that you are not uncomfortable any more...

http://www.ic-network.com/

In case no doctor has ever correctly identified your disease, and

you think " oh I don't have IC, can't have that... " here is the

definition of IC to help convince you...

BTW it takes IC patients on average 5 years to get a correct

diagnosis - this disease is overlooked by most doctors, even some

urologists...they are just told 'you have cystitis " and it's left at

that.

One misconception I'd like to clear up is, people often think IC

patients feel like they have a UTI 24 hours a day, 7 days a week.

While that is true of extreme cases (like mine), most IC'ers only

get " flareups " (symptoms of UTI) anywhere from a few times a year to

a few times a month.

So don't think you don't have IC just because you aren't in pain

24/7...this is a disease where symptoms often wax and wane. Most

IC'ers find that their symptoms are worse after intercourse and

right before their periods.

XXXXXXXXXXXXXX

IC is a complex, enigmatic urinary tract disease about which little

is known. It primarily strikes women--about ninety percent of IC

patients are female. Though it is not fatal, IC is a sometimes

debilitating disease that is often more painful than many life-

threatening diseases (Ratner 3). IC symptoms are similar to those

one experiences with a urinary tract infection, but people with IC,

though they may get UTIs occasionally, have the symptoms while

testing negative for infection. People with IC tend to have a

urinary frequency of at least twice during the night and from eight

to fifty times during the day. They experience feelings of urgency

even when their bladders are empty or only partially full. (Keller

et al, 67-68)

Dr. Vicki Ratner, who has IC, wrote in an article published in the

Journal of Urology, " Imagine feeling like you have a lit match in

your urethra--like your pelvis is on fire. Imagine having to void 60

to 80 times a day and 10 to 30 times a night--never getting a decent

night's sleep. Think what it would feel like to have your doctor

tell you that there is nothing wrong with you, that your problem is

just stress, and that you should try to relax " (Ratner 2).

Much to the misfortune of those who have suffered from it for years,

IC is just now beginning to gain credibility in the medical

community. For years, many doctors dismissed IC as a psychosomatic,

hysterical women's disease and directed complaining patients towards

psychiatric rather than physical treatments. The 1985 edition of

's urology described IC as " a disease that is taunting in

its evasion of being understood that may represent the end stage of

a bladder that has been made irritable by emotional disturbance....A

pathway for the discharge of unconscious hatreds " (Ratner et al, p.

2).

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

Interstitial cystitis (IC) is a chronic inflammatory condition of

the bladder that causes frequent, urgent, and painful urination and

pelvic discomfort. The natural lining of the bladder (epithelium) is

protected from toxins in the urine by a layer of protein called

glycoaminoglycan (GAG). In IC this protective layer has broken down,

allowing toxins to irritate the bladder wall. The bladder then

becomes inflamed and tender and does not store urine well.

Unlike inflammation of the bladder caused by bacterial infection

(cystitis), which is associated with urinary tract infections (UTI)

and usually treated with antibiotics, no infectious agent has been

found in IC. Though not curable, IC is treatable and most patients

find some relief with treatment and lifestyle changes.

Incidence and Prevalence

According to the National Institutes of Health (NIH), IC affects

about 700,000 people in the United States, 90% of which are women.

The average age of onset is 40 years. Although only 25% of cases

involve people under age 30, the number of children affected by IC

may be greater than commonly believed. IC is often misdiagnosed, and

sufferers may see several doctors over the course of years before a

diagnosis is made. Increasing awareness of the disease is helping to

speed diagnosis and treatment.

Causes and Risk Factors

IC is a poorly understood disease with unknown causes. Although no

bacteria or viruses (pathogens) have been found in the urine of IC

sufferers, an unidentified infectious agent may be the cause. Others

believe that IC occurs with ischemia (tissue death) or a deficiency

of GAG in the epithelium. It may be an autoimmune disease, in which

the immune system attacks healthy cells, perhaps following a bladder

infection. Spasms of the pelvic floor muscles may also contribute to

the IC symptoms. It is likely that several factors cause the

condition.

Other conditions associated with IC include the following:

Asthma

Endometriosis

Food allergies

Hay fever (pollen allergy)

Incontinence

Irritable bowel syndrome

Lupus

Migraine

Rheumatoid arthritis

Sinusitis

The connection between IC and these conditions is not understood.

IC may occur following gynecological surgery. Some evidence suggests

an increased risk for IC in Jews; and studies of mothers, daughters,

and twins who suffer from it suggest a hereditary risk factor.

February 14, 2004

You mean I was supposed to be knocked out for that procedure. Oops.

Just high powered antibiotics.

I tried Metabolife in 1997, and I think that is when my problems began. I

know it has a history of causing kidney stones. I began having UTIs when I

used it. (and I used it very briefly). Got those cleared up. Quit using

the Metabolife. I think that is when the bladder problem started. When I

begin to get a UTI I can feel it in my back molars (yes teeth). It is a

very weird feeling, but when I go to the bathroom the sensation creeps

through my teeth. I would have that feeling every few weeks, but when

tested for UTI, nothing would show up. Incontinence problems just continued

to get worse and worse.

Incontinence is definitely not a fun problem to deal with, and having worked

in long-term care, I know the #1 reason people end up there.

Jen

-- Re: spastic bladder

Oh, Jen, thank god you are feeling better and not hurting too bad

right now. I was getting ready to send my Elavil, Atarax and

Elmiron to you, even if it is illegal to do that!

And I'm so glad they gave you a cystoscopy (was it with

hydrodistention, too where they knocked you out and stretched your

bladder some?) because alot of IC'ers, they run into incompetent

docs (IC is almost worse than thyroid for that if you can imagine)

and those docs don't get the diagnosis right, don't even do a

cystoscopy or anything.

When you say high powered drugs...was it Elmiron/Atarax/Elavil (the

big three) or antibiotics? (Some IC'ers have claimed to get better

using massive doses of varied antibiotics under Dr. Fuzugotti

(or something like that I know I spelled his name wrong)...doctors

still don't know for certain it's not bacterial in origin, like

maybe some bacteria that doesn't show up for some reason...) Just

curious...

The IC Network has some ladies who have the leaking problem, and I

am hoping they might give you some good advice/help!

It's no fun when your bladder acts up

Gentle

February 14, 2004

It was definately hydrodistention/outpatient/small town hospital. Trying to

remember the year we had enough medical expenses to write off on our taxes,

and that would be the year having had two of those procedures in a six week

period. I want to say 2001.

Jen

-- Re: spastic bladder

Jen, I think a GOOD urologist (like finding a GOOD endocrinologist)

would be so helpful. And I think the IC Network can be a godsend to

you, too, especially the message boards where people can trade

ideas, info, etc.

It must have been some time ago, that they treated you with

antibiotics? Because any decent uro these days (in the past 3-4

years anyway) would treat you with Elmiron, Atarax, Elavil..the big

three IC drugs...because mainstream uros do not think that IC is

caused by bacteria...antibiotics help I guess mostly because of

their antiinflammatory side effects, dunno...sounds like all they

did was an in-office cystoscopy and not a

hydrodistention/cystoscopy/biopsy like they were supposed to..was

this several years ago (more than five years ago) by any chance?

Because IC has only recently come out of the " dark ages " ....

I think I read that in Britain, IC is considered a hypothyroid

disease.

In the U.S. it's considered a fibromyalgia disease (which OUGHT to

be considered hypothyroid reading all the symptoms of fibro).

You might be really interested in what Dr. Lowe has to say - he says

us fibro (IC comes under the umbrella of fibro) patients need

ungodly doses of T-3 in order to be well - that our numbers may look

bad on labs because of the high doses, but that that is the only way

we can heal and high doses don't cause hyper symptoms in us like

they do other people (Lowe thinks we have tissue resistance or

something.) I dunno, looks like he's helped some people, so I

listen to him....I have actually ordered some Cytomel via Mexico but

that was only a week ago, I'm sure it will take a week or two to get

here. I am going to experiment with seeing what T-3 does for me.

If some of us do the " Lowe protocol " maybe we can post about our

results.

His theories seem sound enough to me but I'm not a doc or a

scientist so maybe my judgement isn't so good.

Gentle

February 14, 2004

There was no bleeding or ulcerations mentioned to me, just extreme

inflammation. Like I mentioned earlier, I experienced no pelvic pain ever,

not even during peak inflammatory periods. It was a cystoscopy. I don't

believe this was what you are calling hydrodistention more like

hydroextension. I don't believe I was over extended, just extended with

fluid. It was performed on an outpatient basis in a hospital. It was not

painful just very uncomfortable due to the pressure from the water/fluid.

Jen

-- Re: spastic bladder

> It was definately hydrodistention/outpatient/small town hospital.

Trying to

> remember the year we had enough medical expenses to write off on

our taxes,

> and that would be the year having had two of those procedures in a

six week

> period. I want to say 2001.

>

> Jen

>

>Hi, Jen, if they did a hydrodistension (as opposed to a cystoscopy

which also uses water but does not overfill the bladder) they had to

have put you out (IV sedation usually). The procedure is far too

painful to tolerate otherwise. I have never heard of a

hydrodistention being done without sedation in the U.S. (same as I

have never heard of an appendectomy etc. done without anesthesia of

some sort).

Did they take " snapshots " of your bladder and remark on the

glomerulations they saw? Those are the hallmark signs of IC and can

only been seen with hydrodistention (not a regular, in-office

cystoscopy when they only partially fill your bladder instead of

over-extending it..)

I would say they were completly incompetent in prescribing you

antibiotics.

If you read any of the articles etc. on ICN you will see that IC is

supposed to be treated with drugs such as Elmiron, Atarax, Elavil...

Gentle

P.S. Here's a good description of the difference between regular

cystoscopy and hydrodistention...as you can see, they remark that it

is to be done under anesthesia only. If you truly did have a

hydrodistention and not just a regular in-office cystoscopy, they

were just as wrong not to give you anesthesia as if they did surgery

without anesthesia. Was it terribly painful? My in-office

cystoscopy (before the hydrodistention/cystoscopy) was uncomfortable

but not terribly painful. The hydrodistention, I was knocked out

for of course and did bleed some afterwards which I understand is

normal. I could see it as I had a foley catheter in for several

hours after I came out of surgery.

XXXXXXX

After other disease processes have been excluded, the " gold

standard " examination to confirm the diagnosis of IC is cystoscopy

with hydrodistention under general or regional anesthesia. This

procedure involves slowly stretching the bladder with fluid, thereby

allowing your physician to see changes that are typical of IC. Some

of these changes include the presence of glomerulations (pinpoint

hemorrhages that occur on the bladder wall, and are seen in the

majority of IC patients), or Hunner's ulcers (or patches), which may

be present in a small minority. Ten percent of patients who present

with symptoms of IC have neither glomerulations nor Hunner's ulcers

upon cystoscopy with hydrodistention. However, these patients may

have IC, and need to receive treatment for their symptoms.

Cystoscopy with hydrodistention is not performed in your doctor's

office. This is because the bladder needs to be filled to a high

pressure in order to see the typical abnormalities of IC, a pressure

that would cause significant pain to an IC patient (or even a

patient who does not have IC), who was not anesthetized. In

addition, in-office cystoscopy may not reveal the glomerulations on

your bladder which are the hallmark of IC, and the diagnosis may be

missed.

XXXXXXXXXXXXXX

If the symptoms come back, you can save this list and insist upon

proper treatment for your IC...

XXXXXXXXXXXXXXX

There are not currently any agreed upon gold standard treatments but

the following are commonly used by specialists treating this

condition:

sodium pentosanpolysulfate (Elmiron®) orally, 100 mg three times a

day for at least a 3-6 month trial

antihistamines such as hydroxizine (Atarax® Vistaril®)

antidepressants (for their direct effect on bladder pain fibers)

such as amitriptyline HCL (Elavil®, Triavil®) 25 mg - 75 mg each

evening, doxepin HCL (Sinequan®) 75 mg at bedtime. imipramine

(Trazodone® 25 mg three times a day.

diet alteration avoiding high potassium and acidic foods/beverages

Other therapies used

hydrodistension of bladder

bladder instillations including: dimethyl sulfoxide (DMSO), Heparin,

Cystitat, Silver Nitrate and Chlorpactin and Bacillus Calmette

Guerin (BCG)

transcutaneous electrical nerve stimulation (TENS), surgery

involving substitution cystoplasty

antispasmodics: Anaspaz®, Cystospaz®, Ditropan®, Levsin®, Levsinex®,

Urispas®, Urised®

urinary anesthetics: phenazopyridine (Pyridium®, Uristat®

February 15, 2004

Are you anywhere near menopause? A leaking bladder when laughing or sneezing

is quite common at this time

Lynda

Re: spastic bladder