Bladder problems

[Guest guest]

Does anyone have Interstitial Cystitis of the bladder? (The bladder and urethra fill up with painful cysts, and chronically inflame.)

To make a LONG story short, I've been thought based on symptoms and urine tests by a urologist to have it for about 4 years, but I'm afraid to do the "scope" that confirms it. (Cystoscopy, I think.) I scheduled and canceled out of fear over and over, because I've been told it's painful after being scoped. Plus there's not much they do to treat this anyway -so I don't see where it would be worth going through just for confirmation.

My urethra actually "fell" into my vaginal canal a few years ago, and they can literally feel marble sized cysts all along it upon pelvic exam. (I'm sorry if that is too much info, but I'm trying to compare with anyone else.) I'm used to it, but it's worsening and I may look into it more when I look into a hysterectomy ---BUT I'm holding all this until later. I want to get through the breast explant first.

Anyway, I'm having some painful issues with it and it made me think to ask about that, too ---since you gals have confirmed everything else for me having been related to these "toxic bags." LOL

Thanks,

Brigite

[Guest guest]

Brigite,

Actually, I have noticed alot of women coming here complaining of

IC. I haven't had problems with it myself, but I had never heard of

it until I came to this site, and it seems to be a common

complaint.

Sis

>

> Does anyone have Interstitial Cystitis of the bladder? (The

bladder and

> urethra fill up with painful cysts, and chronically inflame.)

>

> To make a LONG story short, I've been thought based on symptoms

and urine

> tests by a urologist to have it for about 4 years, but I'm afraid

to do the

> " scope " that confirms it. (Cystoscopy, I think.) I scheduled and

canceled out of

> fear over and over, because I've been told it's painful after

being scoped.

> Plus there's not much they do to treat this anyway -so I don't

see where it

> would be worth going through just for confirmation.

>

> My urethra actually " fell " into my vaginal canal a few years ago,

and they

> can literally feel marble sized cysts all along it upon pelvic

exam. (I'm

> sorry if that is too much info, but I'm trying to compare with

anyone else.) I'm

> used to it, but it's worsening and I may look into it more when I

look into a

> hysterectomy ---BUT I'm holding all this until later. I want to

get through

> the breast explant first.

>

> Anyway, I'm having some painful issues with it and it made me

think to ask

> about that, too ---since you gals have confirmed everything else

for me having

> been related to these " toxic bags. " LOL

>

> Thanks,

> Brigite

>

[Guest guest]

Be sure it is medical grade.

Lynda

At 07:46 AM 7/16/2006, you wrote:

>In a message dated 7/16/2006 8:27:14 AM Eastern Standard Time,

>coss@... writes:

>

>Many women have found that taking medical grade aloe vera greatly

>reduced the symptoms of IC.

>

>Lynda

>

>Wow! Thank you!!! I will check it out.

>

>Brigite

>

[Guest guest]

I would avoid this procedure because of the problems that can

occur. Try the medical grade aloe vera and see if the problems

subside, as I have heard from several women that most of their

symptoms have gone away doing this.

Lynda

At 08:04 AM 7/16/2006, you wrote:

>I have IC but I have never had cysts with it. I have never heard of that

>before. I know that some women develop ulcers, which I have had. I think

>if you have cysts, you really do need to have the scope done. The scope is

>slightly uncomfortable but filling your bladder, generally under anesthesia,

>is the only way to confirm the diagnosis. I have always had improvements

>in symptoms following the scope because stretching the bladder improves IC

>symptoms for some women.

>

>I have had IC for 25 years and was diagnosed by one of the top docs, Dr.

>Parsons, in California. I have been all kinds of drugs, been in drug trails

>and have found the only drug that works for me is heparin injections.

>Heparin brought on a nearly complete remission of symptoms for 10 years.

>Unfortunately those 10 years are up now and my symptoms are intensifying

>again. Since I moved 20 years ago, I can't see Dr. Parsons. My new doc

>refuses to prescribe heparin! He said the drug is too risky because of

>bleeding problems. Amazing that Dr. Parsons didn't think so. I'm going to

>find a new urologist!

>

>Kenda

>

> > Does anyone have Interstitial Cystitis of the bladder? (The bladder and

> > urethra fill up with painful cysts, and chronically inflame.)

> >

> > To make a LONG story short, I've been thought based on symptoms and urine

> > tests by a urologist to have it for about 4 years, but I'm afraid to do the

> > " scope " that confirms it. (Cystoscopy, I think.) I scheduled and

> canceled out

> > of

> > fear over and over, because I've been told it's painful after being scoped.

> > Plus there's not much they do to treat this anyway -so I don't see where it

> > would be worth going through just for confirmation.

> >

> > My urethra actually " fell " into my vaginal canal a few years ago, and they

> > can literally feel marble sized cysts all along it upon pelvic exam. (I'm

> > sorry if that is too much info, but I'm trying to compare with

> anyone else.)

> > I'm

> > used to it, but it's worsening and I may look into it more when I

> look into a

> > hysterectomy ---BUT I'm holding all this until later. I want to get through

> > the breast explant first.

> >

> > Anyway, I'm having some painful issues with it and it made me think to ask

> > about that, too ---since you gals have confirmed everything else

> for me having

> > been related to these " toxic bags. " LOL

> >

> > Thanks,

> > Brigite

>

>

[Guest guest]

Lynda,

What problems are associated with the scope? I never encountered any and

have had several over the years. The aloe does help significantly.

Kenda

> I would avoid this procedure because of the problems that can

> occur. Try the medical grade aloe vera and see if the problems

> subside, as I have heard from several women that most of their

> symptoms have gone away doing this.

>

> Lynda

>

>

> At 08:04 AM 7/16/2006, you wrote:

>

>> I have IC but I have never had cysts with it. I have never heard of that

>> before. I know that some women develop ulcers, which I have had. I think

>> if you have cysts, you really do need to have the scope done. The scope is

>> slightly uncomfortable but filling your bladder, generally under anesthesia,

>> is the only way to confirm the diagnosis. I have always had improvements

>> in symptoms following the scope because stretching the bladder improves IC

>> symptoms for some women.

>>

>> I have had IC for 25 years and was diagnosed by one of the top docs, Dr.

>> Parsons, in California. I have been all kinds of drugs, been in drug trails

>> and have found the only drug that works for me is heparin injections.

>> Heparin brought on a nearly complete remission of symptoms for 10 years.

>> Unfortunately those 10 years are up now and my symptoms are intensifying

>> again. Since I moved 20 years ago, I can't see Dr. Parsons. My new doc

>> refuses to prescribe heparin! He said the drug is too risky because of

>> bleeding problems. Amazing that Dr. Parsons didn't think so. I'm going to

>> find a new urologist!

>>

>> Kenda

>>

>>> Does anyone have Interstitial Cystitis of the bladder? (The bladder and

>>> urethra fill up with painful cysts, and chronically inflame.)

>>>

>>> To make a LONG story short, I've been thought based on symptoms and urine

>>> tests by a urologist to have it for about 4 years, but I'm afraid to do the

>>> " scope " that confirms it. (Cystoscopy, I think.) I scheduled and

>> canceled out

>>> of

>>> fear over and over, because I've been told it's painful after being scoped.

>>> Plus there's not much they do to treat this anyway -so I don't see where it

>>> would be worth going through just for confirmation.

>>>

>>> My urethra actually " fell " into my vaginal canal a few years ago, and they

>>> can literally feel marble sized cysts all along it upon pelvic exam. (I'm

>>> sorry if that is too much info, but I'm trying to compare with

>> anyone else.)

>>> I'm

>>> used to it, but it's worsening and I may look into it more when I

>> look into a

>>> hysterectomy ---BUT I'm holding all this until later. I want to get through

>>> the breast explant first.

>>>

>>> Anyway, I'm having some painful issues with it and it made me think to ask

>>> about that, too ---since you gals have confirmed everything else

>> for me having

>>> been related to these " toxic bags. " LOL

>>>

>>> Thanks,

>>> Brigite

>>

>>

>

>

>

[Guest guest]

Brigite,

I was having some problems my doctor thought were potential bladder

issues - or at least she wanted to rule it out. Such as

incontinence that became acutely worse, microscopic hematuria.

Among other things, I had the cystoscopy and it did not hurt at

all. It is an " in office " procedure and it reminded me of a pelvic

exam. Actually the pelvic is more unpleasant than this was...at

least for me anyway. So is a mammogram. LOL They put a little

scope up there and look around to see " what they can see " . In my

case they saw nothing and the cancer screening came back negative

too!

Please don't be afraid..

.

>

> Does anyone have Interstitial Cystitis of the bladder? (The

bladder and

> urethra fill up with painful cysts, and chronically inflame.)

>

> To make a LONG story short, I've been thought based on symptoms

and urine

> tests by a urologist to have it for about 4 years, but I'm afraid

to do the

> " scope " that confirms it. (Cystoscopy, I think.) I scheduled and

canceled out of

> fear over and over, because I've been told it's painful after

being scoped.

> Plus there's not much they do to treat this anyway -so I don't

see where it

> would be worth going through just for confirmation.

>

> My urethra actually " fell " into my vaginal canal a few years ago,

and they

> can literally feel marble sized cysts all along it upon pelvic

exam. (I'm

> sorry if that is too much info, but I'm trying to compare with

anyone else.) I'm

> used to it, but it's worsening and I may look into it more when I

look into a

> hysterectomy ---BUT I'm holding all this until later. I want to

get through

> the breast explant first.

>

> Anyway, I'm having some painful issues with it and it made me

think to ask

> about that, too ---since you gals have confirmed everything else

for me having

> been related to these " toxic bags. " LOL

>

> Thanks,

> Brigite

>

[Guest guest]

Women have had constant leakage of urine and spasms after this

procedure. Check out all the side effects prior to considering

it. Try anything alternative.

Lynda

At 08:51 AM 7/16/2006, you wrote:

>Lynda,

>

>What problems are associated with the scope? I never encountered any and

>have had several over the years. The aloe does help significantly.

>

>Kenda

>

> > I would avoid this procedure because of the problems that can

> > occur. Try the medical grade aloe vera and see if the problems

> > subside, as I have heard from several women that most of their

> > symptoms have gone away doing this.

> >

> > Lynda

> >

> >

> > At 08:04 AM 7/16/2006, you wrote:

> >

> >> I have IC but I have never had cysts with it. I have never heard of that

> >> before. I know that some women develop ulcers, which I have had. I think

> >> if you have cysts, you really do need to have the scope done. The scope is

> >> slightly uncomfortable but filling your bladder, generally under

> anesthesia,

> >> is the only way to confirm the diagnosis. I have always had improvements

> >> in symptoms following the scope because stretching the bladder improves IC

> >> symptoms for some women.

> >>

> >> I have had IC for 25 years and was diagnosed by one of the top docs, Dr.

> >> Parsons, in California. I have been all kinds of drugs, been in

> drug trails

> >> and have found the only drug that works for me is heparin injections.

> >> Heparin brought on a nearly complete remission of symptoms for 10 years.

> >> Unfortunately those 10 years are up now and my symptoms are intensifying

> >> again. Since I moved 20 years ago, I can't see Dr. Parsons. My new doc

> >> refuses to prescribe heparin! He said the drug is too risky because of

> >> bleeding problems. Amazing that Dr. Parsons didn't think so. I'm going to

> >> find a new urologist!

> >>

> >> Kenda

> >>

> >>> Does anyone have Interstitial Cystitis of the bladder? (The bladder and

> >>> urethra fill up with painful cysts, and chronically inflame.)

> >>>

> >>> To make a LONG story short, I've been thought based on symptoms and urine

> >>> tests by a urologist to have it for about 4 years, but I'm

> afraid to do the

> >>> " scope " that confirms it. (Cystoscopy, I think.) I scheduled and

> >> canceled out

> >>> of

> >>> fear over and over, because I've been told it's painful after

> being scoped.

> >>> Plus there's not much they do to treat this anyway -so I don't

> see where it

> >>> would be worth going through just for confirmation.

> >>>

> >>> My urethra actually " fell " into my vaginal canal a few years

> ago, and they

> >>> can literally feel marble sized cysts all along it upon pelvic exam. (I'm

> >>> sorry if that is too much info, but I'm trying to compare with

> >> anyone else.)

> >>> I'm

> >>> used to it, but it's worsening and I may look into it more when I

> >> look into a

> >>> hysterectomy ---BUT I'm holding all this until later. I want to

> get through

> >>> the breast explant first.

> >>>

> >>> Anyway, I'm having some painful issues with it and it made me

> think to ask

> >>> about that, too ---since you gals have confirmed everything else

> >> for me having

> >>> been related to these " toxic bags. " LOL

> >>>

> >>> Thanks,

> >>> Brigite

> >>

> >>

> >

> >

> >

>

>

[Guest guest]

I have had spasms but that is common after the bladder is stretched. It is

not uncomfortable, at least to me. I have never experienced any leakage

whatsoever. In order to get the proper diagnosis and treatment, I would not

avoid being scoped.

Kenda

> Women have had constant leakage of urine and spasms after this

> procedure. Check out all the side effects prior to considering

> it. Try anything alternative.

>

> Lynda

>

> At 08:51 AM 7/16/2006, you wrote:

>

>> Lynda,

>>

>> What problems are associated with the scope? I never encountered any and

>> have had several over the years. The aloe does help significantly.

>>

>> Kenda

>>

>>> I would avoid this procedure because of the problems that can

>>> occur. Try the medical grade aloe vera and see if the problems

>>> subside, as I have heard from several women that most of their

>>> symptoms have gone away doing this.

>>>

>>> Lynda

>>>

>>>

>>> At 08:04 AM 7/16/2006, you wrote:

>>>

>>>> I have IC but I have never had cysts with it. I have never heard of that

>>>> before. I know that some women develop ulcers, which I have had. I think

>>>> if you have cysts, you really do need to have the scope done. The scope is

>>>> slightly uncomfortable but filling your bladder, generally under

>> anesthesia,

>>>> is the only way to confirm the diagnosis. I have always had improvements

>>>> in symptoms following the scope because stretching the bladder improves IC

>>>> symptoms for some women.

>>>>

>>>> I have had IC for 25 years and was diagnosed by one of the top docs, Dr.

>>>> Parsons, in California. I have been all kinds of drugs, been in

>> drug trails

>>>> and have found the only drug that works for me is heparin injections.

>>>> Heparin brought on a nearly complete remission of symptoms for 10 years.

>>>> Unfortunately those 10 years are up now and my symptoms are intensifying

>>>> again. Since I moved 20 years ago, I can't see Dr. Parsons. My new doc

>>>> refuses to prescribe heparin! He said the drug is too risky because of

>>>> bleeding problems. Amazing that Dr. Parsons didn't think so. I'm going to

>>>> find a new urologist!

>>>>

>>>> Kenda

>>>>

>>>>> Does anyone have Interstitial Cystitis of the bladder? (The bladder and

>>>>> urethra fill up with painful cysts, and chronically inflame.)

>>>>>

>>>>> To make a LONG story short, I've been thought based on symptoms and urine

>>>>> tests by a urologist to have it for about 4 years, but I'm

>> afraid to do the

>>>>> " scope " that confirms it. (Cystoscopy, I think.) I scheduled and

>>>> canceled out

>>>>> of

>>>>> fear over and over, because I've been told it's painful after

>> being scoped.

>>>>> Plus there's not much they do to treat this anyway -so I don't

>> see where it

>>>>> would be worth going through just for confirmation.

>>>>>

>>>>> My urethra actually " fell " into my vaginal canal a few years

>> ago, and they

>>>>> can literally feel marble sized cysts all along it upon pelvic exam. (I'm

>>>>> sorry if that is too much info, but I'm trying to compare with

>>>> anyone else.)

>>>>> I'm

>>>>> used to it, but it's worsening and I may look into it more when I

>>>> look into a

>>>>> hysterectomy ---BUT I'm holding all this until later. I want to

>> get through

>>>>> the breast explant first.

>>>>>

>>>>> Anyway, I'm having some painful issues with it and it made me

>> think to ask

>>>>> about that, too ---since you gals have confirmed everything else

>>>> for me having

>>>>> been related to these " toxic bags. " LOL

>>>>>

>>>>> Thanks,

>>>>> Brigite

>>>>

>>>>

>>>

>>>

>>>

>>

>>

>

>

>

[Guest guest]

There are some of us who avoid doctors because we find that we are

far better off to go the alternative route. I, personally, would not

allow any procedure I could do without trying all possible

alternatives. Symptoms alone can make a diagnosis of most

problems. I have had far too many complications from what doctors

do, and I have heard from many others who also have had problems. We

have learned the hard way.

I have a friend who has leaked ever since this treatment. I do know

that it is a complication, and not rare.

Lynda

At 12:06 PM 7/16/2006, you wrote:

>I have had spasms but that is common after the bladder is stretched. It is

>not uncomfortable, at least to me. I have never experienced any leakage

>whatsoever. In order to get the proper diagnosis and treatment, I would not

>avoid being scoped.

>

>Kenda

>

> > Women have had constant leakage of urine and spasms after this

> > procedure. Check out all the side effects prior to considering

> > it. Try anything alternative.

> >

> > Lynda

> >

> > At 08:51 AM 7/16/2006, you wrote:

> >

> >> Lynda,

> >>

> >> What problems are associated with the scope? I never encountered any and

> >> have had several over the years. The aloe does help significantly.

> >>

> >> Kenda

> >>

> >>> I would avoid this procedure because of the problems that can

> >>> occur. Try the medical grade aloe vera and see if the problems

> >>> subside, as I have heard from several women that most of their

> >>> symptoms have gone away doing this.

> >>>

> >>> Lynda

> >>>

> >>>

> >>> At 08:04 AM 7/16/2006, you wrote:

> >>>

> >>>> I have IC but I have never had cysts with it. I have never heard of that

> >>>> before. I know that some women develop ulcers, which I have had. I think

> >>>> if you have cysts, you really do need to have the scope done.

> The scope is

> >>>> slightly uncomfortable but filling your bladder, generally under

> >> anesthesia,

> >>>> is the only way to confirm the diagnosis. I have always had improvements

> >>>> in symptoms following the scope because stretching the bladder

> improves IC

> >>>> symptoms for some women.

> >>>>

> >>>> I have had IC for 25 years and was diagnosed by one of the top docs, Dr.

> >>>> Parsons, in California. I have been all kinds of drugs, been in

> >> drug trails

> >>>> and have found the only drug that works for me is heparin injections.

> >>>> Heparin brought on a nearly complete remission of symptoms for 10 years.

> >>>> Unfortunately those 10 years are up now and my symptoms are intensifying

> >>>> again. Since I moved 20 years ago, I can't see Dr. Parsons. My new doc

> >>>> refuses to prescribe heparin! He said the drug is too risky because of

> >>>> bleeding problems. Amazing that Dr. Parsons didn't think so.

> I'm going to

> >>>> find a new urologist!

> >>>>

> >>>> Kenda

> >>>>

> >>>>> Does anyone have Interstitial Cystitis of the bladder? (The bladder and

> >>>>> urethra fill up with painful cysts, and chronically inflame.)

> >>>>>

> >>>>> To make a LONG story short, I've been thought based on

> symptoms and urine

> >>>>> tests by a urologist to have it for about 4 years, but I'm

> >> afraid to do the

> >>>>> " scope " that confirms it. (Cystoscopy, I think.) I scheduled and

> >>>> canceled out

> >>>>> of

> >>>>> fear over and over, because I've been told it's painful after

> >> being scoped.

> >>>>> Plus there's not much they do to treat this anyway -so I don't

> >> see where it

> >>>>> would be worth going through just for confirmation.

> >>>>>

> >>>>> My urethra actually " fell " into my vaginal canal a few years

> >> ago, and they

> >>>>> can literally feel marble sized cysts all along it upon

> pelvic exam. (I'm

> >>>>> sorry if that is too much info, but I'm trying to compare with

> >>>> anyone else.)

> >>>>> I'm

> >>>>> used to it, but it's worsening and I may look into it more when I

> >>>> look into a

> >>>>> hysterectomy ---BUT I'm holding all this until later. I want to

> >> get through

> >>>>> the breast explant first.

> >>>>>

> >>>>> Anyway, I'm having some painful issues with it and it made me

> >> think to ask

> >>>>> about that, too ---since you gals have confirmed everything else

> >>>> for me having

> >>>>> been related to these " toxic bags. " LOL

> >>>>>

> >>>>> Thanks,

> >>>>> Brigite

> >>>>

> >>>>

> >>>

> >>>

> >>>

> >>

> >>

> >

> >

> >

>

>

[Guest guest]

Brigite . . . I think you need to bite the bullet and do whatever it necessary regarding those cysts . . . take care of the, or rule out the need to do anything. My ex had reoccuring bladder cysts for years . . . Apparently due to a lifetime of smoking . . . He had to have them removed several times before they quit coming back. His doctors told him he was likely to develp bladder cancer if they weren't taken care of. I'm sure they'll do whatever is necessary to keep you comfortable during whatever procedures are necessary. Hugs and prayers, Rogene

[Guest guest]

I'm with you and avoid docs whenever I can, that's why I treat with an ND

for as much of my healthcare as possible. If a woman feels a scope is

necessary, I wouldn't avoid having it. It isn't painful and can actually

help IC symptoms.

Kenda

> There are some of us who avoid doctors because we find that we are

> far better off to go the alternative route. I, personally, would not

> allow any procedure I could do without trying all possible

> alternatives. Symptoms alone can make a diagnosis of most

> problems. I have had far too many complications from what doctors

> do, and I have heard from many others who also have had problems. We

> have learned the hard way.

>

> I have a friend who has leaked ever since this treatment. I do know

> that it is a complication, and not rare.

>

> Lynda

>

>

> At 12:06 PM 7/16/2006, you wrote:

>

>> I have had spasms but that is common after the bladder is stretched. It is

>> not uncomfortable, at least to me. I have never experienced any leakage

>> whatsoever. In order to get the proper diagnosis and treatment, I would not

>> avoid being scoped.

>>

>> Kenda

>>

>>> Women have had constant leakage of urine and spasms after this

>>> procedure. Check out all the side effects prior to considering

>>> it. Try anything alternative.

>>>

>>> Lynda

>>>

>>> At 08:51 AM 7/16/2006, you wrote:

>>>

>>>> Lynda,

>>>>

>>>> What problems are associated with the scope? I never encountered any and

>>>> have had several over the years. The aloe does help significantly.

>>>>

>>>> Kenda

>>>>

>>>>> I would avoid this procedure because of the problems that can

>>>>> occur. Try the medical grade aloe vera and see if the problems

>>>>> subside, as I have heard from several women that most of their

>>>>> symptoms have gone away doing this.

>>>>>

>>>>> Lynda

>>>>>

>>>>>

>>>>> At 08:04 AM 7/16/2006, you wrote:

>>>>>

>>>>>> I have IC but I have never had cysts with it. I have never heard of that

>>>>>> before. I know that some women develop ulcers, which I have had. I think

>>>>>> if you have cysts, you really do need to have the scope done.

>> The scope is

>>>>>> slightly uncomfortable but filling your bladder, generally under

>>>> anesthesia,

>>>>>> is the only way to confirm the diagnosis. I have always had improvements

>>>>>> in symptoms following the scope because stretching the bladder

>> improves IC

>>>>>> symptoms for some women.

>>>>>>

>>>>>> I have had IC for 25 years and was diagnosed by one of the top docs, Dr.

>>>>>> Parsons, in California. I have been all kinds of drugs, been in

>>>> drug trails

>>>>>> and have found the only drug that works for me is heparin injections.

>>>>>> Heparin brought on a nearly complete remission of symptoms for 10 years.

>>>>>> Unfortunately those 10 years are up now and my symptoms are intensifying

>>>>>> again. Since I moved 20 years ago, I can't see Dr. Parsons. My new doc

>>>>>> refuses to prescribe heparin! He said the drug is too risky because of

>>>>>> bleeding problems. Amazing that Dr. Parsons didn't think so.

>> I'm going to

>>>>>> find a new urologist!

>>>>>>

>>>>>> Kenda

>>>>>>

>>>>>>> Does anyone have Interstitial Cystitis of the bladder? (The bladder and

>>>>>>> urethra fill up with painful cysts, and chronically inflame.)

>>>>>>>

>>>>>>> To make a LONG story short, I've been thought based on

>> symptoms and urine

>>>>>>> tests by a urologist to have it for about 4 years, but I'm

>>>> afraid to do the

>>>>>>> " scope " that confirms it. (Cystoscopy, I think.) I scheduled and

>>>>>> canceled out

>>>>>>> of

>>>>>>> fear over and over, because I've been told it's painful after

>>>> being scoped.

>>>>>>> Plus there's not much they do to treat this anyway -so I don't

>>>> see where it

>>>>>>> would be worth going through just for confirmation.

>>>>>>>

>>>>>>> My urethra actually " fell " into my vaginal canal a few years

>>>> ago, and they

>>>>>>> can literally feel marble sized cysts all along it upon

>> pelvic exam. (I'm

>>>>>>> sorry if that is too much info, but I'm trying to compare with

>>>>>> anyone else.)

>>>>>>> I'm

>>>>>>> used to it, but it's worsening and I may look into it more when I

>>>>>> look into a

>>>>>>> hysterectomy ---BUT I'm holding all this until later. I want to

>>>> get through

>>>>>>> the breast explant first.

>>>>>>>

>>>>>>> Anyway, I'm having some painful issues with it and it made me

>>>> think to ask

>>>>>>> about that, too ---since you gals have confirmed everything else

>>>>>> for me having

>>>>>>> been related to these " toxic bags. " LOL

>>>>>>>

>>>>>>> Thanks,

>>>>>>> Brigite

>>>>>>

>>>>>>

>>>>>

>>>>>

>>>>>

>>>>

>>>>

>>>

>>>

>>>

>>

>>

>

>

>

[Guest guest]

Hi Brigite, Yes, I aslo have Interstitial Cystitis, which I had find out on my own research. This is very hard to diagnose and there is not a cure. Tends to feel worse around time of the month. I just try to drink lots and lots of water when symtoms flare. Makes traveling difficult sometimes. I sure wish I knew something to cure this. This is new with me too, only had it 6 months. Margie

From: KissofSadness@...Reply- To: Subject: Bladder problemsDate: Sun, 16 Jul 2006 06:43:58 EDT

Does anyone have Interstitial Cystitis of the bladder? (The bladder and urethra fill up with painful cysts, and chronically inflame.)

To make a LONG story short, I've been thought based on symptoms and urine tests by a urologist to have it for about 4 years, but I'm afraid to do the "scope" that confirms it. (Cystoscopy, I think.) I scheduled and canceled out of fear over and over, because I've been told it's painful after being scoped. Plus there's not much they do to treat this anyway -so I don't see where it would be worth going through just for confirmation.

My urethra actually "fell" into my vaginal canal a few years ago, and they can literally feel marble sized cysts all along it upon pelvic exam. (I'm sorry if that is too much info, but I'm trying to compare with anyone else.) I'm used to it, but it's worsening and I may look into it more when I look into a hysterectomy ---BUT I'm holding all this until later. I want to get through the breast explant first.

Anyway, I'm having some painful issues with it and it made me think to ask about that, too ---since you gals have confirmed everything else for me having been related to these "toxic bags." LOL

Thanks,

Brigite

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[Guest guest]

Actually, IC is very easy for a urologist to diagnose. They simply fill the

bladder with water, generally under anesthesia, and see if the bladder

hemorrhages. It is the hemorrhaging of the bladder that is the tall tell

sign.

As far as a cure, you are right, there is no cure. The best treatment if

you don't want to take prescription drugs is aloe vera, which was discussed

here yesterday.

Kenda

> Hi Brigite, Yes, I aslo have Interstitial Cystitis, which I had find out on my

> own research. This is very hard to diagnose and there is not a cure. Tends to

> feel worse around time of the month. I just try to drink lots and lots of

> water when symtoms flare. Makes traveling difficult sometimes. I sure wish I

> knew something to cure this. This is new with me too, only had it 6 months.

> Margie

>

>>

>> From: KissofSadness@...

>> Reply-

>>

>> Subject: Bladder problems

>> Date: Sun, 16 Jul 2006 06:43:58 EDT

>>

>> Does anyone have Interstitial Cystitis of the bladder? (The bladder and

>> urethra fill up with painful cysts, and chronically inflame.)

>>

>> To make a LONG story short, I've been thought based on symptoms and urine

>> tests by a urologist to have it for about 4 years, but I'm afraid to do the

>> " scope " that confirms it. (Cystoscopy, I think.) I scheduled and canceled out

>> of fear over and over, because I've been told it's painful after being

>> scoped.

>> Plus there's not much they do to treat this anyway -so I don't see where it

>> would be worth going through just for confirmation.

>>

>> My urethra actually " fell " into my vaginal canal a few years ago, and they

>> can

>> literally feel marble sized cysts all along it upon pelvic exam. (I'm sorry

>> if

>> that is too much info, but I'm trying to compare with anyone else.) I'm used

>> to it, but it's worsening and I may look into it more when I look into a

>> hysterectomy ---BUT I'm holding all this until later. I want to get through

>> the breast explant first.

>>

>> Anyway, I'm having some painful issues with it and it made me think to ask

>> about that, too ---since you gals have confirmed everything else for me

>> having

>> been related to these " toxic bags. " LOL

>>

>> Thanks,

>> Brigite

>>

>

>

> All-in-one security and maintenance for your PC.  Get a free 90-day trial!

> <http://g.msn.com/8HMBENUS/2752??PS=47575>

>

>

[Guest guest]

Brigite, I was diagnosed with IC three years prior to explant. I have also had a growth and 20 calcified stones removed from my right kidney. Urinary problems seem to plague those with implants also. KissofSadness@... wrote: Does anyone have Interstitial Cystitis of the bladder? (The bladder and urethra fill up with painful cysts, and chronically inflame.) To make a

LONG story short, I've been thought based on symptoms and urine tests by a urologist to have it for about 4 years, but I'm afraid to do the "scope" that confirms it. (Cystoscopy, I think.) I scheduled and canceled out of fear over and over, because I've been told it's painful after being scoped. Plus there's not much they do to treat this anyway -so I don't see where it would be worth going through just for confirmation. My urethra actually "fell" into my vaginal canal a few years ago, and they can literally feel marble sized cysts all along it upon pelvic exam. (I'm sorry if that is too much info, but I'm trying to compare with anyone else.) I'm used to it, but it's worsening and I may look into it more when I look into a hysterectomy ---BUT I'm holding all this until later. I want to get through the breast explant first. Anyway, I'm having some painful issues with

it and it made me think to ask about that, too ---since you gals have confirmed everything else for me having been related to these "toxic bags." LOL Thanks, Brigite

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[Guest guest]

My family doctor is treating my IC with laser acutpunture. I decided against all prescription meds, so this seems to work. I still have to wear "leak pads" every day, but the pain is very minimal. I am hoping that in time my explant will have been the best thing for my bladder. Kenda Skaggs <skaggs@...> wrote: I have IC but I have never had cysts with it. I have never heard of thatbefore. I know that some women develop ulcers, which I have had. I thinkif you

have cysts, you really do need to have the scope done. The scope isslightly uncomfortable but filling your bladder, generally under anesthesia,is the only way to confirm the diagnosis. I have always had improvementsin symptoms following the scope because stretching the bladder improves ICsymptoms for some women.I have had IC for 25 years and was diagnosed by one of the top docs, Dr.Parsons, in California. I have been all kinds of drugs, been in drug trailsand have found the only drug that works for me is heparin injections.Heparin brought on a nearly complete remission of symptoms for 10 years.Unfortunately those 10 years are up now and my symptoms are intensifyingagain. Since I moved 20 years ago, I can't see Dr. Parsons. My new docrefuses to prescribe heparin! He said the drug is too risky because ofbleeding problems. Amazing that Dr. Parsons didn't think so. I'm going tofind a new

urologist!Kenda> Does anyone have Interstitial Cystitis of the bladder? (The bladder and> urethra fill up with painful cysts, and chronically inflame.)> > To make a LONG story short, I've been thought based on symptoms and urine> tests by a urologist to have it for about 4 years, but I'm afraid to do the> "scope" that confirms it. (Cystoscopy, I think.) I scheduled and canceled out> of > fear over and over, because I've been told it's painful after being scoped.> Plus there's not much they do to treat this anyway -so I don't see where it> would be worth going through just for confirmation.> > My urethra actually "fell" into my vaginal canal a few years ago, and they> can literally feel marble sized cysts all along it upon pelvic exam. (I'm> sorry if that is too much info, but I'm trying to compare with anyone else.)> I'm > used to it, but it's

worsening and I may look into it more when I look into a> hysterectomy ---BUT I'm holding all this until later. I want to get through> the breast explant first.> > Anyway, I'm having some painful issues with it and it made me think to ask> about that, too ---since you gals have confirmed everything else for me having> been related to these "toxic bags." LOL> > Thanks,> Brigite

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[Guest guest]

Hi ,

As far as I know, leaking isn't a part of IC symptoms. I don't know how

important a correct diagnosis is for women here, especially if they choose

not to use mainstream medicine and choose to use alternative methods but I

have read a few symptoms here that are not IC related, such as cysts in the

bladder. IC symptoms mimic bladder infections. Here is some information on

IC from the ICA, the leading support group for IC patients.

Kenda

..

WHAT IS INTERSTITIAL CYSTITIS?

nterstitial cystitis (IC) is a chronic inflammatory condition of the

bladder. Its cause is unknown. " Common " cystitis, also known as a urinary

tract infection, is caused by bacteria and is usually successfully treated

with antibiotics. Unlike common cystitis, IC is believed not to be caused by

bacteria and does not respond to conventional antibiotic therapy. It is

important to note that IC is not a psychosomatic disorder nor is it caused

by stress.

WHO IS AFFECTED?

IC can affect people of any age, race or sex. It is, however, most commonly

found in women. Recent epidemiological data suggest that there may be

greater than 700,000 cases of IC in the US.

SYMPTOMS

Some or all of these symptoms may be present:

FREQUENCY: Day and/or night frequency of urination (up to 60 times a day in

severe cases). In early or very mild cases, frequency is sometimes the only

symptom.

URGENCY: The sensation of having to urinate immediately, which may also be

accompanied by pain, pressure or spasms.

PAIN: Can be in the lower abdominal, urethral or vaginal area. Pain is also

frequently associated with sexual intercourse. Men with IC may experience

testicular, scrotal and/or perineal pain, and painful ejaculation.

OTHER DISORDERS: Some patients also report muscle and joint pain, migraines,

allergic reactions and gastrointestinal problems, as well as the more common

symptoms of IC described above. It appears that IC has an as yet unexplained

association with certain other chronic diseases and pain syndromes such as

vulvar vestibulitis, fibromyalgia and irritable bowel syndrome. Many IC

patients, however, have only bladder symptoms.

DIAGNOSIS

Most IC patients have difficulty obtaining a diagnosis. To make a proper

diagnosis of IC, a urologist must follow these steps:

Take urine cultures to determine if there is a bacterial infection present.

Rule out other diseases and/or conditions that have symptoms resembling IC.

These diseases may include bladder cancer, kidney problems, tuberculosis,

vaginal infections, sexually transmitted diseases, endometriosis, radiation

cystitis and neurological disorders.

Perform a cystoscopy with hydrodistention under general anesthesia if no

infection is present and no other disorder is discovered. If distention

under anesthesia is not performed, the diagnosis of IC may be missed.

Cystoscopy during a routine office visit may not reveal the characteristic

abnormalities of IC and can be painful for those who have IC. It is

necessary to distend the bladder under general or regional anesthesia in

order to see the pinpoint hemorrhages on the bladder wall that are the

hallmark of this disease. A biopsy of the bladder wall may be necessary at

this time to rule out other diseases such as bladder cancer and to assist in

the diagnosis of IC. IC is not associated with bladder cancer.

TREATMENTS

At this time there is no cure for IC, nor is there an effective treatment

which works for everyone. However, a vast majority of IC patients are helped

by one or more of the following treatments:

ORAL MEDICATIONS

ELMIRON® (pentosan polysulfate sodium): Elmiron received FDA approval in

1996. It is the only oral medication approved specifically for use in IC. It

is believed to work by repairing a thin or damaged bladder lining.

ANTIDEPRESSANTS: Tricyclic antidepressants such as Elavil® (amitriptyline)

have been shown to help with both the pain and frequency of IC. In IC, these

medications are used for their anti-pain properties, not as a treatment for

depression.

OTHER ORAL MEDICATIONS: These include anti-inflammatory agents,

antispasmodics, bladder analgesics, such as Urimax®, antihistamines, and

muscle relaxants.

BLADDER INSTILLATIONS

BLADDER DISTENTION: The bladder is stretched by filling it with water under

general anesthesia. This is part of the diagnostic procedure for IC, and may

be therapeutic as well.

DMSO (dimethyl sulfoxide): This medication is instilled directly into the

bladder. It is believed to work as an anti-inflammatory agent and therefore

reduces pain. DMSO can be mixed with steroids, heparin, and/or local

anesthetics to form a bladder " cocktail. "

BCG (bacillus Calmette-Guerin): This experimental treatment is currently in

the clinical trial phase and is not yet approved for IC by the FDA. It

appears to work by boosting the immune system.

CYSTISTAT® (hyaluronic acid): This medication is also in clinical trials and

is not yet approved for use in IC in the United States. It is thought to

work by replacing the defective lining of the bladder. Efficacy is not known

at this time.

OTHER BLADDER INSTILLATIONS Clorpactin WCS-90 (oxychlorosene sodium), can be

very painful and requires general anesthesia, although it has been used in

dilute form in an office setting. Silver Nitrate is used infrequently and

considered an outdated therapy.

OTHER TREATMENTS

DIET: Eliminating certain foods (acidic, spicy) may decrease the severity of

IC symptoms. Also, smoking, drinking coffee or tea, and alcoholic beverages

may aggravate IC. Prelief, an over-the-counter dietary supplement, may help

IC patients better tolerate acid foods and beverages.

SELF-HELP: Self-help techniques can improve the quality of life and reduce

the incidence and severity of flare-ups. These include changes in diet,

stress reduction, visualization, biofeedback, bladder retraining and

exercise, among others.

ELECTRONIC NERVE STIMULATORS:

Transcutaneous Electrical Nerve Stimulation (TENS): This device, which is

worn externally, relieves bladder pain in some people.

Sacral Nerve Stimulation Implants: These surgically implanted devices are

approved for use in treating urinary incontinence, urgency and frequency.

They are not yet FDA-approved fo treating IC pain, but are currently

undergoing testing for this purpose.

SURGERY: For a small minority of patients whose symptoms are severe and who

do not respond to other IC treatments, bladder surgery may be considered.

However in some cases, IC symptoms may not improve. Several types of surgery

have been used to treat IC, including cystectomy and urinary diversion.

Laser surgery should be reserved solely for the Hunner¹s ulcer form of IC.

Brochures and Fact Sheets for many of these treatments are available through

the ICA.

> My family doctor is treating my IC with laser acutpunture. I decided against

> all prescription meds, so this seems to work. I still have to wear " leak

> pads " every day, but the pain is very minimal. I am hoping that in time my

> explant will have been the best thing for my bladder.

>

>

>

> Kenda Skaggs <skaggs@...> wrote:

> I have IC but I have never had cysts with it. I have never heard of

> that

> before. I know that some women develop ulcers, which I have had. I think

> if you have cysts, you really do need to have the scope done. The scope is

> slightly uncomfortable but filling your bladder, generally under anesthesia,

> is the only way to confirm the diagnosis. I have always had improvements

> in symptoms following the scope because stretching the bladder improves IC

> symptoms for some women.

>

> I have had IC for 25 years and was diagnosed by one of the top docs, Dr.

> Parsons, in California. I have been all kinds of drugs, been in drug trails

> and have found the only drug that works for me is heparin injections.

> Heparin brought on a nearly complete remission of symptoms for 10 years.

> Unfortunately those 10 years are up now and my symptoms are intensifying

> again. Since I moved 20 years ago, I can't see Dr. Parsons. My new doc

> refuses to prescribe heparin! He said the drug is too risky because of

> bleeding problems. Amazing that Dr. Parsons didn't think so. I'm going to

> find a new urologist!

>

> Kenda

>

>> Does anyone have Interstitial Cystitis of the bladder? (The bladder and

>> urethra fill up with painful cysts, and chronically inflame.)

>>

>> To make a LONG story short, I've been thought based on symptoms and urine

>> tests by a urologist to have it for about 4 years, but I'm afraid to do the

>> " scope " that confirms it. (Cystoscopy, I think.) I scheduled and canceled out

>> of

>> fear over and over, because I've been told it's painful after being scoped.

>> Plus there's not much they do to treat this anyway -so I don't see where it

>> would be worth going through just for confirmation.

>>

>> My urethra actually " fell " into my vaginal canal a few years ago, and they

>> can literally feel marble sized cysts all along it upon pelvic exam. (I'm

>> sorry if that is too much info, but I'm trying to compare with anyone else.)

>> I'm

>> used to it, but it's worsening and I may look into it more when I look into a

>> hysterectomy ---BUT I'm holding all this until later. I want to get through

>> the breast explant first.

>>

>> Anyway, I'm having some painful issues with it and it made me think to ask

>> about that, too ---since you gals have confirmed everything else for me

>> having

>> been related to these " toxic bags. " LOL

>>

>> Thanks,

>> Brigite

>

>

>

>

>

>

> ---------------------------------

> Groups are talking. We¹re listening. Check out the handy changes to

> Groups.

[Guest guest]

Kendra, My experiences with many doctors have been that they can't see there hand in front of there face. I have come up with all my diagnoses pretty much on my own, since doctors hate to hear you might know more than they do. I plan on trying the aloe, does anyone know if aloe could affect blood presssure medicine? Thanks Margie

From: Kenda Skaggs <skaggs@...>Reply- To: < >Subject: Re: Bladder problemsDate: Mon, 17 Jul 2006 09:28:56 -0500

Actually, IC is very easy for a urologist to diagnose. They simply fill thebladder with water, generally under anesthesia, and see if the bladderhemorrhages. It is the hemorrhaging of the bladder that is the tall tellsign.As far as a cure, you are right, there is no cure. The best treatment ifyou don't want to take prescription drugs is aloe vera, which was discussedhere yesterday.Kenda> Hi Brigite, Yes, I aslo have Interstitial Cystitis, which I had find out on my> own research. This is very hard to diagnose and there is not a cure. Tends to> feel worse around time of the month. I just try to drink lots and lots of> water when symtoms flare. Makes traveling difficult sometimes. I sure wish I> knew something to cure this. This is new with me too, only had it 6 months.> Margie> >> >> From: KissofSadnessaol>> Reply- >> >> Subject: Bladder problems>> Date: Sun, 16 Jul 2006 06:43:58 EDT>> >> Does anyone have Interstitial Cystitis of the bladder? (The bladder and>> urethra fill up with painful cysts, and chronically inflame.)>> >> To make a LONG story short, I've been thought based on symptoms and urine>> tests by a urologist to have it for about 4 years, but I'm afraid to do the>> "scope" that confirms it. (Cystoscopy, I think.) I scheduled and canceled out>> of fear over and over, because I've been told it's painful after being>> scoped. >> Plus there's not much they do to treat this anyway -so I don't see where it>> would be worth going through just for confirmation.>> >> My urethra actually "fell" into my vaginal canal a few years ago, and they>> can >> literally feel marble sized cysts all along it upon pelvic exam. (I'm sorry>> if >> that is too much info, but I'm trying to compare with anyone else.) I'm used>> to it, but it's worsening and I may look into it more when I look into a>> hysterectomy ---BUT I'm holding all this until later. I want to get through>> the breast explant first.>> >> Anyway, I'm having some painful issues with it and it made me think to ask>> about that, too ---since you gals have confirmed everything else for me>> having >> been related to these "toxic bags." LOL>> >> Thanks,>> Brigite>> > > > All-in-one security and maintenance for your PC. Get a free 90-day trial!> <http://g.msn.com/8HMBENUS/2752??PS=47575>> >

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[Guest guest]

, I have also tried muscle contractions/ keggle exercises. Hold for 10 seconds, and do it several times a day. It seems to help control the number of times to the bathroom when symtoms flare. Margie

From: Lamse <wannabe_proverbs31@...>Reply- To: Subject: Re: Bladder problemsDate: Mon, 17 Jul 2006 20:03:23 -0700 (PDT)

My family doctor is treating my IC with laser acutpunture. I decided against all prescription meds, so this seems to work. I still have to wear "leak pads" every day, but the pain is very minimal. I am hoping that in time my explant will have been the best thing for my bladder.

Kenda Skaggs <skaggs@...> wrote:

I have IC but I have never had cysts with it. I have never heard of thatbefore. I know that some women develop ulcers, which I have had. I thinkif you have cysts, you really do need to have the scope done. The scope isslightly uncomfortable but filling your bladder, generally under anesthesia,is the only way to confirm the diagnosis. I have always had improvementsin symptoms following the scope because stretching the bladder improves ICsymptoms for some women.I have had IC for 25 years and was diagnosed by one of the top docs, Dr.Parsons, in California. I have been all kinds of drugs, been in drug trailsand have found the only drug that works for me is heparin injections.Heparin brought on a nearly complete remission of symptoms for 10 years.Unfortunately those 10 years are up now and my symptoms are intensifyingagain. Since I moved 20 years ago, I can't see Dr. Parsons. My new docrefuses to prescribe heparin! He said the drug is too risky because ofbleeding problems. Amazing that Dr. Parsons didn't think so. I'm going tofind a new urologist!Kenda> Does anyone have Interstitial Cystitis of the bladder? (The bladder and> urethra fill up with painful cysts, and chronically inflame.)> > To make a LONG story short, I've been thought based on symptoms and urine> tests by a urologist to have it for about 4 years, but I'm afraid to do the> "scope" that confirms it. (Cystoscopy, I think.) I scheduled and canceled out> of > fear over and over, because I've been told it's painful after being scoped.> Plus there's not much they do to treat this anyway -so I don't see where it> would be worth going through just for confirmation.> > My urethra actually "fell" into my vaginal canal a few years ago, and they> can literally feel marble sized cysts all along it upon pelvic exam. (I'm> sorry if that is too much info, but I'm trying to compare with anyone else.)> I'm > used to it, but it's worsening and I may look into it more when I look into a> hysterectomy ---BUT I'm holding all this until later. I want to get through> the breast explant first.> > Anyway, I'm having some painful issues with it and it made me think to ask> about that, too ---since you gals have confirmed everything else for me having> been related to these "toxic bags." LOL> > Thanks,> Brigite

Groups are talking. We’re listening. Check out the handy changes to .

Check the weather anywhere, anytime - just type "weather" from MSN Search

[Guest guest]

Hi Margie,

My experiences with docs have been much the same as yours, that's why my

healthcare needs are met by an ND. With IC though, the diagnosis is pretty

simple if a cystoscopy is done.

Kenda

>

> Kendra, My experiences with many doctors have been that they can't see there

> hand in front of there face. I have come up with all my diagnoses pretty much

> on my own, since doctors hate to hear you might know more than they do. I plan

> on trying the aloe, does anyone know if aloe could affect blood presssure

> medicine? Thanks Margie

>

>>

>> From: Kenda Skaggs <skaggs@...>

>> Reply-

>> < >

>> Subject: Re: Bladder problems

>> Date: Mon, 17 Jul 2006 09:28:56 -0500

>>

>> Actually, IC is very easy for a urologist to diagnose. They simply fill the

>> bladder with water, generally under anesthesia, and see if the bladder

>> hemorrhages. It is the hemorrhaging of the bladder that is the tall tell

>> sign.

>>

>> As far as a cure, you are right, there is no cure. The best treatment if

>> you don't want to take prescription drugs is aloe vera, which was discussed

>> here yesterday.

>>

>> Kenda

>>

>>>> Hi Brigite, Yes, I aslo have Interstitial Cystitis, which I had find out on

>>>> >> my

>>>> own research. This is very hard to diagnose and there is not a cure. Tends

>>>> >> to

>>>> feel worse around time of the month. I just try to drink lots and lots of

>>>> water when symtoms flare. Makes traveling difficult sometimes. I sure wish

>>>> I

>>>> knew something to cure this. This is new with me too, only had it 6 months.

>>>> Margie

>>>>

>>>>>>

>>>>>> From: KissofSadness@...

>>>>>> Reply-

>>>>>>

>>>>>> Subject: Bladder problems

>>>>>> Date: Sun, 16 Jul 2006 06:43:58 EDT

>>>>>>

>>>>>> Does anyone have Interstitial Cystitis of the bladder? (The bladder and

>>>>>> urethra fill up with painful cysts, and chronically inflame.)

>>>>>>

>>>>>> To make a LONG story short, I've been thought based on symptoms and urine

>>>>>> tests by a urologist to have it for about 4 years, but I'm afraid to do

>>>>>> >>> the

>>>>>> " scope " that confirms it. (Cystoscopy, I think.) I scheduled and canceled

>>>>>> >>> out

>>>>>> of fear over and over, because I've been told it's painful after being

>>>>>> scoped.

>>>>>> Plus there's not much they do to treat this anyway -so I don't see where

>>>>>> it

>>>>>> would be worth going through just for confirmation.

>>>>>>

>>>>>> My urethra actually " fell " into my vaginal canal a few years ago, and >>>

>>>>>> they

>>>>>> can

>>>>>> literally feel marble sized cysts all along it upon pelvic exam. (I'm

>>>> sorry

>>>>>> if

>>>>>> that is too much info, but I'm trying to compare with anyone else.) I'm

>>>>>> >>> used

>>>>>> to it, but it's worsening and I may look into it more when I look into a

>>>>>> hysterectomy ---BUT I'm holding all this until later. I want to get

>>>> through

>>>>>> the breast explant first.

>>>>>>

>>>>>> Anyway, I'm having some painful issues with it and it made me think to

>>>>>> >>> ask

>>>>>> about that, too ---since you gals have confirmed everything else for me

>>>>>> having

>>>>>> been related to these " toxic bags. " LOL

>>>>>>

>>>>>> Thanks,

>>>>>> Brigite

>>>>>>

>>>>

>>>>

>>>> All-in-one security and maintenance for your PC. Get a free 90-day trial!

>>>> <http://g.msn.com/8HMBENUS/2752??PS=47575>

>>>>

>>>>

>>

>>

>

>

> Check the weather anywhere, anytime - just type " weather " from MSN Search

> <http://g.msn.com/8HMBENUS/2728??PS=47575>

>

>

[Guest guest]

Kenda, I know I was diagnosed with IC from a urologist by a cystoscopy. The reason for the leaking is because the pain from the tiny ulcers causes bladder spasms. I don't leak unless I have a full bladder and then it gets desparate to find a restroom. The urologist explained to me that a normal bladder has a protective mucus lining because of the acidity of urine. A person with IC, can no longer create this mucus lining, thus the urine burns ulcers on the bladder wall. He put me on Elmiron and I was on it for almost three years. It worked great. He said, either this drug makes a protective lining or it helps the body make one ( I cannot remember which). When I got sick from the implants, my doctor put me on a "drug holiday", to see if it was my medication causing my fibro symptoms. He said there has been some studies linking arthritis and fibro pain to Elimron. After he cleared

the idea of my symptoms being caused by my medications he said I could start taking it again. I refused to go back on it. I want to "beat this" naturally if I can. Kenda Skaggs <skaggs@...> wrote: Hi ,As far as I know, leaking isn't a part of IC symptoms. I don't know howimportant a correct diagnosis is for women here, especially if they choosenot to use mainstream medicine and choose to use alternative methods but Ihave read a few symptoms here that

are not IC related, such as cysts in thebladder. IC symptoms mimic bladder infections. Here is some information onIC from the ICA, the leading support group for IC patients.Kenda.WHAT IS INTERSTITIAL CYSTITIS?nterstitial cystitis (IC) is a chronic inflammatory condition of thebladder. Its cause is unknown. "Common" cystitis, also known as a urinarytract infection, is caused by bacteria and is usually successfully treatedwith antibiotics. Unlike common cystitis, IC is believed not to be caused bybacteria and does not respond to conventional antibiotic therapy. It isimportant to note that IC is not a psychosomatic disorder nor is it causedby stress.WHO IS AFFECTED? IC can affect people of any age, race or sex. It is, however, most commonlyfound in women. Recent epidemiological data suggest that there may begreater than 700,000 cases of IC in the US.SYMPTOMS Some or all of these symptoms

may be present:FREQUENCY: Day and/or night frequency of urination (up to 60 times a day insevere cases). In early or very mild cases, frequency is sometimes the onlysymptom.URGENCY: The sensation of having to urinate immediately, which may also beaccompanied by pain, pressure or spasms.PAIN: Can be in the lower abdominal, urethral or vaginal area. Pain is alsofrequently associated with sexual intercourse. Men with IC may experiencetesticular, scrotal and/or perineal pain, and painful ejaculation.OTHER DISORDERS: Some patients also report muscle and joint pain, migraines,allergic reactions and gastrointestinal problems, as well as the more commonsymptoms of IC described above. It appears that IC has an as yet unexplainedassociation with certain other chronic diseases and pain syndromes such asvulvar vestibulitis, fibromyalgia and irritable bowel syndrome. Many ICpatients, however, have only bladder

symptoms.DIAGNOSIS Most IC patients have difficulty obtaining a diagnosis. To make a properdiagnosis of IC, a urologist must follow these steps:Take urine cultures to determine if there is a bacterial infection present.Rule out other diseases and/or conditions that have symptoms resembling IC.These diseases may include bladder cancer, kidney problems, tuberculosis,vaginal infections, sexually transmitted diseases, endometriosis, radiationcystitis and neurological disorders.Perform a cystoscopy with hydrodistention under general anesthesia if noinfection is present and no other disorder is discovered. If distentionunder anesthesia is not performed, the diagnosis of IC may be missed.Cystoscopy during a routine office visit may not reveal the characteristicabnormalities of IC and can be painful for those who have IC. It isnecessary to distend the bladder under general or regional anesthesia inorder to

see the pinpoint hemorrhages on the bladder wall that are thehallmark of this disease. A biopsy of the bladder wall may be necessary atthis time to rule out other diseases such as bladder cancer and to assist inthe diagnosis of IC. IC is not associated with bladder cancer.TREATMENTS At this time there is no cure for IC, nor is there an effective treatmentwhich works for everyone. However, a vast majority of IC patients are helpedby one or more of the following treatments:ORAL MEDICATIONSELMIRON® (pentosan polysulfate sodium): Elmiron received FDA approval in1996. It is the only oral medication approved specifically for use in IC. Itis believed to work by repairing a thin or damaged bladder lining.ANTIDEPRESSANTS: Tricyclic antidepressants such as Elavil® (amitriptyline)have been shown to help with both the pain and frequency of IC. In IC, thesemedications are used for their anti-pain properties, not as

a treatment fordepression.OTHER ORAL MEDICATIONS: These include anti-inflammatory agents,antispasmodics, bladder analgesics, such as Urimax®, antihistamines, andmuscle relaxants.BLADDER INSTILLATIONSBLADDER DISTENTION: The bladder is stretched by filling it with water undergeneral anesthesia. This is part of the diagnostic procedure for IC, and maybe therapeutic as well.DMSO (dimethyl sulfoxide): This medication is instilled directly into thebladder. It is believed to work as an anti-inflammatory agent and thereforereduces pain. DMSO can be mixed with steroids, heparin, and/or localanesthetics to form a bladder "cocktail."BCG (bacillus Calmette-Guerin): This experimental treatment is currently inthe clinical trial phase and is not yet approved for IC by the FDA. Itappears to work by boosting the immune system.CYSTISTAT® (hyaluronic acid): This medication is also in clinical trials

andis not yet approved for use in IC in the United States. It is thought towork by replacing the defective lining of the bladder. Efficacy is not knownat this time.OTHER BLADDER INSTILLATIONS Clorpactin WCS-90 (oxychlorosene sodium), can bevery painful and requires general anesthesia, although it has been used indilute form in an office setting. Silver Nitrate is used infrequently andconsidered an outdated therapy.OTHER TREATMENTSDIET: Eliminating certain foods (acidic, spicy) may decrease the severity ofIC symptoms. Also, smoking, drinking coffee or tea, and alcoholic beveragesmay aggravate IC. Prelief, an over-the-counter dietary supplement, may helpIC patients better tolerate acid foods and beverages.SELF-HELP: Self-help techniques can improve the quality of life and reducethe incidence and severity of flare-ups. These include changes in diet,stress reduction, visualization, biofeedback, bladder

retraining andexercise, among others.ELECTRONIC NERVE STIMULATORS:Transcutaneous Electrical Nerve Stimulation (TENS): This device, which isworn externally, relieves bladder pain in some people.Sacral Nerve Stimulation Implants: These surgically implanted devices areapproved for use in treating urinary incontinence, urgency and frequency.They are not yet FDA-approved fo treating IC pain, but are currentlyundergoing testing for this purpose.SURGERY: For a small minority of patients whose symptoms are severe and whodo not respond to other IC treatments, bladder surgery may be considered.However in some cases, IC symptoms may not improve. Several types of surgeryhave been used to treat IC, including cystectomy and urinary diversion.Laser surgery should be reserved solely for the Hunner¹s ulcer form of IC.Brochures and Fact Sheets for many of these treatments are available throughthe

ICA.> My family doctor is treating my IC with laser acutpunture. I decided against> all prescription meds, so this seems to work. I still have to wear "leak> pads" every day, but the pain is very minimal. I am hoping that in time my> explant will have been the best thing for my bladder.> > > > Kenda Skaggs <skaggscountycable> wrote:> I have IC but I have never had cysts with it. I have never heard of> that> before. I know that some women develop ulcers, which I have had. I think> if you have cysts, you really do need to have the scope done. The scope is> slightly uncomfortable but filling your bladder, generally under anesthesia,> is the only way to confirm the diagnosis. I have always had improvements> in symptoms following the scope because stretching the bladder improves IC> symptoms for

some women.> > I have had IC for 25 years and was diagnosed by one of the top docs, Dr.> Parsons, in California. I have been all kinds of drugs, been in drug trails> and have found the only drug that works for me is heparin injections.> Heparin brought on a nearly complete remission of symptoms for 10 years.> Unfortunately those 10 years are up now and my symptoms are intensifying> again. Since I moved 20 years ago, I can't see Dr. Parsons. My new doc> refuses to prescribe heparin! He said the drug is too risky because of> bleeding problems. Amazing that Dr. Parsons didn't think so. I'm going to> find a new urologist!> > Kenda> >> Does anyone have Interstitial Cystitis of the bladder? (The bladder and>> urethra fill up with painful cysts, and chronically inflame.)>> >> To make a LONG story short, I've been thought based on symptoms and

urine>> tests by a urologist to have it for about 4 years, but I'm afraid to do the>> "scope" that confirms it. (Cystoscopy, I think.) I scheduled and canceled out>> of >> fear over and over, because I've been told it's painful after being scoped.>> Plus there's not much they do to treat this anyway -so I don't see where it>> would be worth going through just for confirmation.>> >> My urethra actually "fell" into my vaginal canal a few years ago, and they>> can literally feel marble sized cysts all along it upon pelvic exam. (I'm>> sorry if that is too much info, but I'm trying to compare with anyone else.)>> I'm >> used to it, but it's worsening and I may look into it more when I look into a>> hysterectomy ---BUT I'm holding all this until later. I want to get through>> the breast explant first.>> >> Anyway, I'm

having some painful issues with it and it made me think to ask>> about that, too ---since you gals have confirmed everything else for me>> having>> been related to these "toxic bags." LOL>> >> Thanks,>> Brigite> > > > > > > ---------------------------------> Groups are talking. We¹re listening. Check out the handy changes to > Groups.

Groups are talking. We’re listening. Check out the handy changes to .

[Guest guest]

Aloe vera coats the bladder and soothes, allowing healing.

Lynda

At 11:15 AM 7/18/2006, you wrote:

>Kenda,

>

>I know I was diagnosed with IC from a urologist

>by a cystoscopy. The reason for the leaking is

>because the pain from the tiny ulcers causes

>bladder spasms. I don't leak unless I have a

>full bladder and then it gets desparate to find

>a restroom. The urologist explained to me that

>a normal bladder has a protective mucus lining

>because of the acidity of urine. A person with

>IC, can no longer create this mucus lining, thus

>the urine burns ulcers on the bladder wall. He

>put me on Elmiron and I was on it for almost

>three years. It worked great. He said, either

>this drug makes a protective lining or it helps

>the body make one ( I cannot remember

>which). When I got sick from the implants, my

>doctor put me on a " drug holiday " , to see if it

>was my medication causing my fibro symptoms. He

>said there has been some studies linking

>arthritis and fibro pain to Elimron. After he

>cleared the idea of my symptoms being caused by

>my medications he said I could start taking it

>again. I refused to go back on it. I want to " beat this " naturally if I can.

>

>

>

>Kenda Skaggs <skaggs@...> wrote:

>Hi ,

>

>As far as I know, leaking isn't a part of IC symptoms. I don't know how

>important a correct diagnosis is for women here, especially if they choose

>not to use mainstream medicine and choose to use alternative methods but I

>have read a few symptoms here that are not IC related, such as cysts in the

>bladder. IC symptoms mimic bladder infections. Here is some information on

>IC from the ICA, the leading support group for IC patients.

>

>Kenda

>

>.

>WHAT IS INTERSTITIAL CYSTITIS?

>nterstitial cystitis (IC) is a chronic inflammatory condition of the

>bladder. Its cause is unknown. " Common " cystitis, also known as a urinary

>tract infection, is caused by bacteria and is usually successfully treated

>with antibiotics. Unlike common cystitis, IC is believed not to be caused by

>bacteria and does not respond to conventional antibiotic therapy. It is

>important to note that IC is not a psychosomatic disorder nor is it caused

>by stress.

>

>WHO IS AFFECTED?

>IC can affect people of any age, race or sex. It is, however, most commonly

>found in women. Recent epidemiological data suggest that there may be

>greater than 700,000 cases of IC in the US.

>

>SYMPTOMS

>Some or all of these symptoms may be present:

>

>FREQUENCY: Day and/or night frequency of urination (up to 60 times a day in

>severe cases). In early or very mild cases, frequency is sometimes the only

>symptom.

>

>URGENCY: The sensation of having to urinate immediately, which may also be

>accompanied by pain, pressure or spasms.

>

>PAIN: Can be in the lower abdominal, urethral or vaginal area. Pain is also

>frequently associated with sexual intercourse. Men with IC may experience

>testicular, scrotal and/or perineal pain, and painful ejaculation.

>

>OTHER DISORDERS: Some patients also report muscle and joint pain, migraines,

>allergic reactions and gastrointestinal problems, as well as the more common

>symptoms of IC described above. It appears that IC has an as yet unexplained

>association with certain other chronic diseases and pain syndromes such as

>vulvar vestibulitis, fibromyalgia and irritable bowel syndrome. Many IC

>patients, however, have only bladder symptoms.

>

>DIAGNOSIS

>Most IC patients have difficulty obtaining a diagnosis. To make a proper

>diagnosis of IC, a urologist must follow these steps:

>

>Take urine cultures to determine if there is a bacterial infection present.

>

>Rule out other diseases and/or conditions that have symptoms resembling IC.

>These diseases may include bladder cancer, kidney problems, tuberculosis,

>vaginal infections, sexually transmitted diseases, endometriosis, radiation

>cystitis and neurological disorders.

>

>Perform a cystoscopy with hydrodistention under general anesthesia if no

>infection is present and no other disorder is discovered. If distention

>under anesthesia is not performed, the diagnosis of IC may be missed.

>Cystoscopy during a routine office visit may not reveal the characteristic

>abnormalities of IC and can be painful for those who have IC. It is

>necessary to distend the bladder under general or regional anesthesia in

>order to see the pinpoint hemorrhages on the bladder wall that are the

>hallmark of this disease. A biopsy of the bladder wall may be necessary at

>this time to rule out other diseases such as bladder cancer and to assist in

>the diagnosis of IC. IC is not associated with bladder cancer.

>

>TREATMENTS

>At this time there is no cure for IC, nor is there an effective treatment

>which works for everyone. However, a vast majority of IC patients are helped

>by one or more of the following treatments:

>

>ORAL MEDICATIONS

>

>ELMIRON® (pentosan polysulfate sodium): Elmiron received FDA approval in

>1996. It is the only oral medication approved specifically for use in IC. It

>is believed to work by repairing a thin or damaged bladder lining.

>

>ANTIDEPRESSANTS: Tricyclic antidepressants such as Elavil® (amitriptyline)

>have been shown to help with both the pain and frequency of IC. In IC, these

>medications are used for their anti-pain properties, not as a treatment for

>depression.

>

>OTHER ORAL MEDICATIONS: These include anti-inflammatory agents,

>antispasmodics, bladder analgesics, such as Urimax®, antihistamines, and

>muscle relaxants.

>

>BLADDER INSTILLATIONS

>

>BLADDER DISTENTION: The bladder is stretched by filling it with water under

>general anesthesia. This is part of the diagnostic procedure for IC, and may

>be therapeutic as well.

>

>DMSO (dimethyl sulfoxide): This medication is instilled directly into the

>bladder. It is believed to work as an anti-inflammatory agent and therefore

>reduces pain. DMSO can be mixed with steroids, heparin, and/or local

>anesthetics to form a bladder " cocktail. "

>

>BCG (bacillus Calmette-Guerin): This experimental treatment is currently in

>the clinical trial phase and is not yet approved for IC by the FDA. It

>appears to work by boosting the immune system.

>

>CYSTISTAT® (hyaluronic acid): This medication is also in clinical trials and

>is not yet approved for use in IC in the United States. It is thought to

>work by replacing the defective lining of the bladder. Efficacy is not known

>at this time.

>

>OTHER BLADDER INSTILLATIONS Clorpactin WCS-90 (oxychlorosene sodium), can be

>very painful and requires general anesthesia, although it has been used in

>dilute form in an office setting. Silver Nitrate is used infrequently and

>considered an outdated therapy.

>

>OTHER TREATMENTS

>

>DIET: Eliminating certain foods (acidic, spicy) may decrease the severity of

>IC symptoms. Also, smoking, drinking coffee or tea, and alcoholic beverages

>may aggravate IC. Prelief, an over-the-counter dietary supplement, may help

>IC patients better tolerate acid foods and beverages.

>

>SELF-HELP: Self-help techniques can improve the quality of life and reduce

>the incidence and severity of flare-ups. These include changes in diet,

>stress reduction, visualization, biofeedback, bladder retraining and

>exercise, among others.

>

>ELECTRONIC NERVE STIMULATORS:

>

>Transcutaneous Electrical Nerve Stimulation (TENS): This device, which is

>worn externally, relieves bladder pain in some people.

>

>Sacral Nerve Stimulation Implants: These surgically implanted devices are

>approved for use in treating urinary incontinence, urgency and frequency.

>They are not yet FDA-approved fo treating IC pain, but are currently

>undergoing testing for this purpose.

>

>SURGERY: For a small minority of patients whose symptoms are severe and who

>do not respond to other IC treatments, bladder surgery may be considered.

>However in some cases, IC symptoms may not improve. Several types of surgery

>have been used to treat IC, including cystectomy and urinary diversion.

>Laser surgery should be reserved solely for the Hunner¹s ulcer form of IC.

>

>Brochures and Fact Sheets for many of these treatments are available through

>the ICA.

>

> > My family doctor is treating my IC with laser

> acutpunture. I decided against

> > all prescription meds, so this seems to work. I still have to wear " leak

> > pads " every day, but the pain is very minimal. I am hoping that in time my

> > explant will have been the best thing for my bladder.

> >

> >

> >

> > Kenda Skaggs

> <<mailto:skaggs%40countycable.com>skaggs@...> wrote:

> > I have IC but I have never had cysts with it. I have never heard of

> > that

> > before. I know that some women develop ulcers, which I have had. I think

> > if you have cysts, you really do need to have the scope done. The scope is

> > slightly uncomfortable but filling your

> bladder, generally under anesthesia,

> > is the only way to confirm the diagnosis. I have always had improvements

> > in symptoms following the scope because stretching the bladder improves IC

> > symptoms for some women.

> >

> > I have had IC for 25 years and was diagnosed by one of the top docs, Dr.

> > Parsons, in California. I have been all kinds of drugs, been in drug trails

> > and have found the only drug that works for me is heparin injections.

> > Heparin brought on a nearly complete remission of symptoms for 10 years.

> > Unfortunately those 10 years are up now and my symptoms are intensifying

> > again. Since I moved 20 years ago, I can't see Dr. Parsons. My new doc

> > refuses to prescribe heparin! He said the drug is too risky because of

> > bleeding problems. Amazing that Dr. Parsons didn't think so. I'm going to

> > find a new urologist!

> >

> > Kenda

> >

> >> Does anyone have Interstitial Cystitis of the bladder? (The bladder and

> >> urethra fill up with painful cysts, and chronically inflame.)

> >>

> >> To make a LONG story short, I've been thought based on symptoms and urine

> >> tests by a urologist to have it for about 4

> years, but I'm afraid to do the

> >> " scope " that confirms it. (Cystoscopy, I

> think.) I scheduled and canceled out

> >> of

> >> fear over and over, because I've been told

> it's painful after being scoped.

> >> Plus there's not much they do to treat this

> anyway -so I don't see where it

> >> would be worth going through just for confirmation.

> >>

> >> My urethra actually " fell " into my vaginal canal a few years ago, and they

> >> can literally feel marble sized cysts all along it upon pelvic exam. (I'm

> >> sorry if that is too much info, but I'm

> trying to compare with anyone else.)

> >> I'm

> >> used to it, but it's worsening and I may

> look into it more when I look into a

> >> hysterectomy ---BUT I'm holding all this

> until later. I want to get through

> >> the breast explant first.

> >>

> >> Anyway, I'm having some painful issues with it and it made me think to ask

> >> about that, too ---since you gals have confirmed everything else for me

> >> having

> >> been related to these " toxic bags. " LOL

> >>

> >> Thanks,

> >> Brigite

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Groups are talking. We¹re listening. Check out the handy changes to

> > Groups.

>

>

>

>Groups are talking. We’re listening. Check out

>the

><http://pa./*http://us.rd./evt=41144/*http://\

/local/newemail.html>handy

>changes to .

>

[Guest guest]

,

I'm glad you had a correct diagnosis, your leaking bladder makes sense now.

I was in a drug trial for injectable Elmiron 20 years ago and it worked

great too. Unfortunately it was never FDA approved. I tried the oral

Elmiron and it gave me a hiatal hernia and caused my hair to start falling

out. You really should check out desertharvest.com for their IC protocol.

I am on it again. IC didn't bother me for 10 years but is now again since I

am going through peri-menopause. The aloe I get from Desert Harvest has

really helped with burning. I did a bladder stretching trial many years ago

and it helped keep my bladder stretched out, eliminating urgency. Have you

ever tried gradually stretching your bladder to increase capacity?

Kenda

> Kenda,

>

> I know I was diagnosed with IC from a urologist by a cystoscopy. The reason

> for the leaking is because the pain from the tiny ulcers causes bladder

> spasms. I don't leak unless I have a full bladder and then it gets desparate

> to find a restroom. The urologist explained to me that a normal bladder has a

> protective mucus lining because of the acidity of urine. A person with IC,

> can no longer create this mucus lining, thus the urine burns ulcers on the

> bladder wall. He put me on Elmiron and I was on it for almost three years.

> It worked great. He said, either this drug makes a protective lining or it

> helps the body make one ( I cannot remember which). When I got sick from the

> implants, my doctor put me on a " drug holiday " , to see if it was my medication

> causing my fibro symptoms. He said there has been some studies linking

> arthritis and fibro pain to Elimron. After he cleared the idea of my symptoms

> being caused by my medications he said I could start taking it

> again. I refused to go back on it. I want to " beat this " naturally if I

> can.

>

>

>

> Kenda Skaggs <skaggs@...> wrote:

> Hi ,

>

> As far as I know, leaking isn't a part of IC symptoms. I don't know how

> important a correct diagnosis is for women here, especially if they choose

> not to use mainstream medicine and choose to use alternative methods but I

> have read a few symptoms here that are not IC related, such as cysts in the

> bladder. IC symptoms mimic bladder infections. Here is some information on

> IC from the ICA, the leading support group for IC patients.

>

> Kenda

>

> .

> WHAT IS INTERSTITIAL CYSTITIS?

> nterstitial cystitis (IC) is a chronic inflammatory condition of the

> bladder. Its cause is unknown. " Common " cystitis, also known as a urinary

> tract infection, is caused by bacteria and is usually successfully treated

> with antibiotics. Unlike common cystitis, IC is believed not to be caused by

> bacteria and does not respond to conventional antibiotic therapy. It is

> important to note that IC is not a psychosomatic disorder nor is it caused

> by stress.

>

> WHO IS AFFECTED?

> IC can affect people of any age, race or sex. It is, however, most commonly

> found in women. Recent epidemiological data suggest that there may be

> greater than 700,000 cases of IC in the US.

>

> SYMPTOMS

> Some or all of these symptoms may be present:

>

> FREQUENCY: Day and/or night frequency of urination (up to 60 times a day in

> severe cases). In early or very mild cases, frequency is sometimes the only

> symptom.

>

> URGENCY: The sensation of having to urinate immediately, which may also be

> accompanied by pain, pressure or spasms.

>

> PAIN: Can be in the lower abdominal, urethral or vaginal area. Pain is also

> frequently associated with sexual intercourse. Men with IC may experience

> testicular, scrotal and/or perineal pain, and painful ejaculation.

>

> OTHER DISORDERS: Some patients also report muscle and joint pain, migraines,

> allergic reactions and gastrointestinal problems, as well as the more common

> symptoms of IC described above. It appears that IC has an as yet unexplained

> association with certain other chronic diseases and pain syndromes such as

> vulvar vestibulitis, fibromyalgia and irritable bowel syndrome. Many IC

> patients, however, have only bladder symptoms.

>

> DIAGNOSIS

> Most IC patients have difficulty obtaining a diagnosis. To make a proper

> diagnosis of IC, a urologist must follow these steps:

>

> Take urine cultures to determine if there is a bacterial infection present.

>

> Rule out other diseases and/or conditions that have symptoms resembling IC.

> These diseases may include bladder cancer, kidney problems, tuberculosis,

> vaginal infections, sexually transmitted diseases, endometriosis, radiation

> cystitis and neurological disorders.

>

> Perform a cystoscopy with hydrodistention under general anesthesia if no

> infection is present and no other disorder is discovered. If distention

> under anesthesia is not performed, the diagnosis of IC may be missed.

> Cystoscopy during a routine office visit may not reveal the characteristic

> abnormalities of IC and can be painful for those who have IC. It is

> necessary to distend the bladder under general or regional anesthesia in

> order to see the pinpoint hemorrhages on the bladder wall that are the

> hallmark of this disease. A biopsy of the bladder wall may be necessary at

> this time to rule out other diseases such as bladder cancer and to assist in

> the diagnosis of IC. IC is not associated with bladder cancer.

>

> TREATMENTS

> At this time there is no cure for IC, nor is there an effective treatment

> which works for everyone. However, a vast majority of IC patients are helped

> by one or more of the following treatments:

>

> ORAL MEDICATIONS

>

> ELMIRON® (pentosan polysulfate sodium): Elmiron received FDA approval in

> 1996. It is the only oral medication approved specifically for use in IC. It

> is believed to work by repairing a thin or damaged bladder lining.

>

> ANTIDEPRESSANTS: Tricyclic antidepressants such as Elavil® (amitriptyline)

> have been shown to help with both the pain and frequency of IC. In IC, these

> medications are used for their anti-pain properties, not as a treatment for

> depression.

>

> OTHER ORAL MEDICATIONS: These include anti-inflammatory agents,

> antispasmodics, bladder analgesics, such as Urimax®, antihistamines, and

> muscle relaxants.

>

> BLADDER INSTILLATIONS

>

> BLADDER DISTENTION: The bladder is stretched by filling it with water under

> general anesthesia. This is part of the diagnostic procedure for IC, and may

> be therapeutic as well.

>

> DMSO (dimethyl sulfoxide): This medication is instilled directly into the

> bladder. It is believed to work as an anti-inflammatory agent and therefore

> reduces pain. DMSO can be mixed with steroids, heparin, and/or local

> anesthetics to form a bladder " cocktail. "

>

> BCG (bacillus Calmette-Guerin): This experimental treatment is currently in

> the clinical trial phase and is not yet approved for IC by the FDA. It

> appears to work by boosting the immune system.

>

> CYSTISTAT® (hyaluronic acid): This medication is also in clinical trials and

> is not yet approved for use in IC in the United States. It is thought to

> work by replacing the defective lining of the bladder. Efficacy is not known

> at this time.

>

> OTHER BLADDER INSTILLATIONS Clorpactin WCS-90 (oxychlorosene sodium), can be

> very painful and requires general anesthesia, although it has been used in

> dilute form in an office setting. Silver Nitrate is used infrequently and

> considered an outdated therapy.

>

> OTHER TREATMENTS

>

> DIET: Eliminating certain foods (acidic, spicy) may decrease the severity of

> IC symptoms. Also, smoking, drinking coffee or tea, and alcoholic beverages

> may aggravate IC. Prelief, an over-the-counter dietary supplement, may help

> IC patients better tolerate acid foods and beverages.

>

> SELF-HELP: Self-help techniques can improve the quality of life and reduce

> the incidence and severity of flare-ups. These include changes in diet,

> stress reduction, visualization, biofeedback, bladder retraining and

> exercise, among others.

>

> ELECTRONIC NERVE STIMULATORS:

>

> Transcutaneous Electrical Nerve Stimulation (TENS): This device, which is

> worn externally, relieves bladder pain in some people.

>

> Sacral Nerve Stimulation Implants: These surgically implanted devices are

> approved for use in treating urinary incontinence, urgency and frequency.

> They are not yet FDA-approved fo treating IC pain, but are currently

> undergoing testing for this purpose.

>

> SURGERY: For a small minority of patients whose symptoms are severe and who

> do not respond to other IC treatments, bladder surgery may be considered.

> However in some cases, IC symptoms may not improve. Several types of surgery

> have been used to treat IC, including cystectomy and urinary diversion.

> Laser surgery should be reserved solely for the Hunner¹s ulcer form of IC.

>

> Brochures and Fact Sheets for many of these treatments are available through

> the ICA.

>

>> My family doctor is treating my IC with laser acutpunture. I decided against

>> all prescription meds, so this seems to work. I still have to wear " leak

>> pads " every day, but the pain is very minimal. I am hoping that in time my

>> explant will have been the best thing for my bladder.

>>

>>

>>

>> Kenda Skaggs <skaggs@...> wrote:

>> I have IC but I have never had cysts with it. I have never heard of

>> that

>> before. I know that some women develop ulcers, which I have had. I think

>> if you have cysts, you really do need to have the scope done. The scope is

>> slightly uncomfortable but filling your bladder, generally under anesthesia,

>> is the only way to confirm the diagnosis. I have always had improvements

>> in symptoms following the scope because stretching the bladder improves IC

>> symptoms for some women.

>>

>> I have had IC for 25 years and was diagnosed by one of the top docs, Dr.

>> Parsons, in California. I have been all kinds of drugs, been in drug trails

>> and have found the only drug that works for me is heparin injections.

>> Heparin brought on a nearly complete remission of symptoms for 10 years.

>> Unfortunately those 10 years are up now and my symptoms are intensifying

>> again. Since I moved 20 years ago, I can't see Dr. Parsons. My new doc

>> refuses to prescribe heparin! He said the drug is too risky because of

>> bleeding problems. Amazing that Dr. Parsons didn't think so. I'm going to

>> find a new urologist!

>>

>> Kenda

>>

>>> Does anyone have Interstitial Cystitis of the bladder? (The bladder and

>>> urethra fill up with painful cysts, and chronically inflame.)

>>>

>>> To make a LONG story short, I've been thought based on symptoms and urine

>>> tests by a urologist to have it for about 4 years, but I'm afraid to do the

>>> " scope " that confirms it. (Cystoscopy, I think.) I scheduled and canceled

>>> out

>>> of

>>> fear over and over, because I've been told it's painful after being scoped.

>>> Plus there's not much they do to treat this anyway -so I don't see where it

>>> would be worth going through just for confirmation.

>>>

>>> My urethra actually " fell " into my vaginal canal a few years ago, and they

>>> can literally feel marble sized cysts all along it upon pelvic exam. (I'm

>>> sorry if that is too much info, but I'm trying to compare with anyone else.)

>>> I'm

>>> used to it, but it's worsening and I may look into it more when I look into

>>> a

>>> hysterectomy ---BUT I'm holding all this until later. I want to get through

>>> the breast explant first.

>>>

>>> Anyway, I'm having some painful issues with it and it made me think to ask

>>> about that, too ---since you gals have confirmed everything else for me

>>> having

>>> been related to these " toxic bags. " LOL

>>>

>>> Thanks,

>>> Brigite

>>

>>

>>

>>

>>

>>

>> ---------------------------------

>> Groups are talking. We¹re listening. Check out the handy changes to

>> Groups.

>

>

>

>

>

>

> ---------------------------------

> Groups are talking. We’re listening. Check out the handy changes to

> Groups.

[Guest guest]

Kenda, I have never heard of bladder stretching, although I think I may benefit from something of that nature. How is it done? Who would I go to for this? Unfortunately, most Dr.'s in my area would rather give me a prescription and claim it is my only "cure". Which was what they said about Elmiron. It was a miracle drup to stop the symptoms, however, it was no "cure". Seeing the symptoms came back when I got off the drug. I know why they like to push that drug. I saw the receipt and the amount my insurance company had to pay, it is close to a $500 per month drug. I wonder how much the doctors get in insentives for prescribing it. I guess I will try the aloe. I am hoping that my IC is one more auto-immune disorder caused by my implants, and will get better as more time passes since explant. Thanks for the info, Kenda Skaggs <skaggs@...> wrote: ,I'm glad you had a correct diagnosis, your leaking bladder makes sense now.I was in a drug trial for injectable Elmiron 20 years ago and it workedgreat too. Unfortunately it was never FDA approved. I tried the oralElmiron and it gave me a hiatal hernia and caused my hair to start fallingout. You really should check out desertharvest.com for their IC protocol.I am on it again. IC didn't bother me for 10 years but is now again since Iam going through peri-menopause. The aloe I get from Desert Harvest hasreally helped with burning. I did a bladder stretching trial many years agoand it helped keep my bladder stretched out, eliminating urgency. Have youever tried gradually stretching your bladder to increase

capacity?Kenda> Kenda,> > I know I was diagnosed with IC from a urologist by a cystoscopy. The reason> for the leaking is because the pain from the tiny ulcers causes bladder> spasms. I don't leak unless I have a full bladder and then it gets desparate> to find a restroom. The urologist explained to me that a normal bladder has a> protective mucus lining because of the acidity of urine. A person with IC,> can no longer create this mucus lining, thus the urine burns ulcers on the> bladder wall. He put me on Elmiron and I was on it for almost three years.> It worked great. He said, either this drug makes a protective lining or it> helps the body make one ( I cannot remember which). When I got sick from the> implants, my doctor put me on a "drug holiday", to see if it was my medication> causing my fibro symptoms. He said there has been some studies linking> arthritis

and fibro pain to Elimron. After he cleared the idea of my symptoms> being caused by my medications he said I could start taking it> again. I refused to go back on it. I want to "beat this" naturally if I> can.> > > > Kenda Skaggs wrote:> Hi ,> > As far as I know, leaking isn't a part of IC symptoms. I don't know how> important a correct diagnosis is for women here, especially if they choose> not to use mainstream medicine and choose to use alternative methods but I> have read a few symptoms here that are not IC related, such as cysts in the> bladder. IC symptoms mimic bladder infections. Here is some information on> IC from the ICA, the leading support group for IC patients.> > Kenda> > .> WHAT IS INTERSTITIAL CYSTITIS?> nterstitial cystitis (IC) is a chronic inflammatory condition of

the> bladder. Its cause is unknown. "Common" cystitis, also known as a urinary> tract infection, is caused by bacteria and is usually successfully treated> with antibiotics. Unlike common cystitis, IC is believed not to be caused by> bacteria and does not respond to conventional antibiotic therapy. It is> important to note that IC is not a psychosomatic disorder nor is it caused> by stress.> > WHO IS AFFECTED? > IC can affect people of any age, race or sex. It is, however, most commonly> found in women. Recent epidemiological data suggest that there may be> greater than 700,000 cases of IC in the US.> > SYMPTOMS > Some or all of these symptoms may be present:> > FREQUENCY: Day and/or night frequency of urination (up to 60 times a day in> severe cases). In early or very mild cases, frequency is sometimes the only> symptom.> > URGENCY:

The sensation of having to urinate immediately, which may also be> accompanied by pain, pressure or spasms.> > PAIN: Can be in the lower abdominal, urethral or vaginal area. Pain is also> frequently associated with sexual intercourse. Men with IC may experience> testicular, scrotal and/or perineal pain, and painful ejaculation.> > OTHER DISORDERS: Some patients also report muscle and joint pain, migraines,> allergic reactions and gastrointestinal problems, as well as the more common> symptoms of IC described above. It appears that IC has an as yet unexplained> association with certain other chronic diseases and pain syndromes such as> vulvar vestibulitis, fibromyalgia and irritable bowel syndrome. Many IC> patients, however, have only bladder symptoms.> > DIAGNOSIS > Most IC patients have difficulty obtaining a diagnosis. To make a proper> diagnosis of IC, a

urologist must follow these steps:> > Take urine cultures to determine if there is a bacterial infection present.> > Rule out other diseases and/or conditions that have symptoms resembling IC.> These diseases may include bladder cancer, kidney problems, tuberculosis,> vaginal infections, sexually transmitted diseases, endometriosis, radiation> cystitis and neurological disorders.> > Perform a cystoscopy with hydrodistention under general anesthesia if no> infection is present and no other disorder is discovered. If distention> under anesthesia is not performed, the diagnosis of IC may be missed.> Cystoscopy during a routine office visit may not reveal the characteristic> abnormalities of IC and can be painful for those who have IC. It is> necessary to distend the bladder under general or regional anesthesia in> order to see the pinpoint hemorrhages on the bladder wall

that are the> hallmark of this disease. A biopsy of the bladder wall may be necessary at> this time to rule out other diseases such as bladder cancer and to assist in> the diagnosis of IC. IC is not associated with bladder cancer.> > TREATMENTS > At this time there is no cure for IC, nor is there an effective treatment> which works for everyone. However, a vast majority of IC patients are helped> by one or more of the following treatments:> > ORAL MEDICATIONS> > ELMIRON® (pentosan polysulfate sodium): Elmiron received FDA approval in> 1996. It is the only oral medication approved specifically for use in IC. It> is believed to work by repairing a thin or damaged bladder lining.> > ANTIDEPRESSANTS: Tricyclic antidepressants such as Elavil® (amitriptyline)> have been shown to help with both the pain and frequency of IC. In IC, these> medications are

used for their anti-pain properties, not as a treatment for> depression.> > OTHER ORAL MEDICATIONS: These include anti-inflammatory agents,> antispasmodics, bladder analgesics, such as Urimax®, antihistamines, and> muscle relaxants.> > BLADDER INSTILLATIONS> > BLADDER DISTENTION: The bladder is stretched by filling it with water under> general anesthesia. This is part of the diagnostic procedure for IC, and may> be therapeutic as well.> > DMSO (dimethyl sulfoxide): This medication is instilled directly into the> bladder. It is believed to work as an anti-inflammatory agent and therefore> reduces pain. DMSO can be mixed with steroids, heparin, and/or local> anesthetics to form a bladder "cocktail."> > BCG (bacillus Calmette-Guerin): This experimental treatment is currently in> the clinical trial phase and is not yet approved for IC by the FDA.

It> appears to work by boosting the immune system.> > CYSTISTAT® (hyaluronic acid): This medication is also in clinical trials and> is not yet approved for use in IC in the United States. It is thought to> work by replacing the defective lining of the bladder. Efficacy is not known> at this time.> > OTHER BLADDER INSTILLATIONS Clorpactin WCS-90 (oxychlorosene sodium), can be> very painful and requires general anesthesia, although it has been used in> dilute form in an office setting. Silver Nitrate is used infrequently and> considered an outdated therapy.> > OTHER TREATMENTS> > DIET: Eliminating certain foods (acidic, spicy) may decrease the severity of> IC symptoms. Also, smoking, drinking coffee or tea, and alcoholic beverages> may aggravate IC. Prelief, an over-the-counter dietary supplement, may help> IC patients better tolerate acid foods and

beverages.> > SELF-HELP: Self-help techniques can improve the quality of life and reduce> the incidence and severity of flare-ups. These include changes in diet,> stress reduction, visualization, biofeedback, bladder retraining and> exercise, among others.> > ELECTRONIC NERVE STIMULATORS:> > Transcutaneous Electrical Nerve Stimulation (TENS): This device, which is> worn externally, relieves bladder pain in some people.> > Sacral Nerve Stimulation Implants: These surgically implanted devices are> approved for use in treating urinary incontinence, urgency and frequency.> They are not yet FDA-approved fo treating IC pain, but are currently> undergoing testing for this purpose.> > SURGERY: For a small minority of patients whose symptoms are severe and who> do not respond to other IC treatments, bladder surgery may be considered.> However in some

cases, IC symptoms may not improve. Several types of surgery> have been used to treat IC, including cystectomy and urinary diversion.> Laser surgery should be reserved solely for the Hunner¹s ulcer form of IC.> > Brochures and Fact Sheets for many of these treatments are available through> the ICA.> >> My family doctor is treating my IC with laser acutpunture. I decided against>> all prescription meds, so this seems to work. I still have to wear "leak>> pads" every day, but the pain is very minimal. I am hoping that in time my>> explant will have been the best thing for my bladder.>> >> >> >> Kenda Skaggs wrote:>> I have IC but I have never had cysts with it. I have never heard of>> that>> before. I know that some women develop ulcers, which I have had. I think>> if you have cysts,

you really do need to have the scope done. The scope is>> slightly uncomfortable but filling your bladder, generally under anesthesia,>> is the only way to confirm the diagnosis. I have always had improvements>> in symptoms following the scope because stretching the bladder improves IC>> symptoms for some women.>> >> I have had IC for 25 years and was diagnosed by one of the top docs, Dr.>> Parsons, in California. I have been all kinds of drugs, been in drug trails>> and have found the only drug that works for me is heparin injections.>> Heparin brought on a nearly complete remission of symptoms for 10 years.>> Unfortunately those 10 years are up now and my symptoms are intensifying>> again. Since I moved 20 years ago, I can't see Dr. Parsons. My new doc>> refuses to prescribe heparin! He said the drug is too risky because of>> bleeding

problems. Amazing that Dr. Parsons didn't think so. I'm going to>> find a new urologist!>> >> Kenda>> >>> Does anyone have Interstitial Cystitis of the bladder? (The bladder and>>> urethra fill up with painful cysts, and chronically inflame.)>>> >>> To make a LONG story short, I've been thought based on symptoms and urine>>> tests by a urologist to have it for about 4 years, but I'm afraid to do the>>> "scope" that confirms it. (Cystoscopy, I think.) I scheduled and canceled>>> out>>> of >>> fear over and over, because I've been told it's painful after being scoped.>>> Plus there's not much they do to treat this anyway -so I don't see where it>>> would be worth going through just for confirmation.>>> >>> My urethra actually "fell" into my vaginal canal a few years

ago, and they>>> can literally feel marble sized cysts all along it upon pelvic exam. (I'm>>> sorry if that is too much info, but I'm trying to compare with anyone else.)>>> I'm >>> used to it, but it's worsening and I may look into it more when I look into>>> a>>> hysterectomy ---BUT I'm holding all this until later. I want to get through>>> the breast explant first.>>> >>> Anyway, I'm having some painful issues with it and it made me think to ask>>> about that, too ---since you gals have confirmed everything else for me>>> having>>> been related to these "toxic bags." LOL>>> >>> Thanks,>>> Brigite>> >> >> >> >> >> >> --------------------------------->> Groups are talking. We¹re listening. Check out

the handy changes to >> Groups. > > > > > > > ---------------------------------> Groups are talking. We’re listening. Check out the handy changes to > Groups. Opinions expressed are NOT meant to take the place of advice given by licensed health care professionals. Consult your physician or licensed health care professional before commencing any medical treatment. "Do not let either the medical authorities or the politicians mislead you. Find out what the facts are, and make your own decisions about how to live a happy life and how to work for a better world." - Linus ing, two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace)See our photos website! Enter "implants" for access at this link:http://.shutterfly.com/action/

[Guest guest]

,

You can have your bladder stretched under anesthesia if you want to go that

route. I did it a few times in my early days of IC, 25 years ago. You can

also stretch your bladder yourself and keep it stretched by extending the

time between urinating. If you feel that you need to go, try to hold it for

5 more minutes each time until you are comfortable with 5 minutes. Once you

are comfortable with 5 minutes, hold your urine for 10 minutes, then 15 and

longer if you feel up to it. I used to feel the urge to urinate constantly.

Now, I can hold my urine, if necessary for hours. Of course this is never a

good thing to do but if you are in a position where you can't find a

restroom, it is comforting to know that I'm not going to wet my pants.

Urgency is no longer a symptom of mine, pain is my only symptom. I have

kept my bladder stretched by using this protocol for close to 20 years.

If aloe can help your pain level and you can stretch your bladder to a more

normal size, you should really be feeling much better soon!

Kenda

> Kenda,

>

> I have never heard of bladder stretching, although I think I may benefit

> from something of that nature. How is it done? Who would I go to for this?

> Unfortunately, most Dr.'s in my area would rather give me a prescription and

> claim it is my only " cure " . Which was what they said about Elmiron. It was a

> miracle drup to stop the symptoms, however, it was no " cure " . Seeing the

> symptoms came back when I got off the drug. I know why they like to push that

> drug. I saw the receipt and the amount my insurance company had to pay, it is

> close to a $500 per month drug. I wonder how much the doctors get in

> insentives for prescribing it. I guess I will try the aloe. I am hoping that

> my IC is one more auto-immune disorder caused by my implants, and will get

> better as more time passes since explant.

>

> Thanks for the info,

>

>

>

> Kenda Skaggs <skaggs@...> wrote:

> ,

>

> I'm glad you had a correct diagnosis, your leaking bladder makes sense now.

> I was in a drug trial for injectable Elmiron 20 years ago and it worked

> great too. Unfortunately it was never FDA approved. I tried the oral

> Elmiron and it gave me a hiatal hernia and caused my hair to start falling

> out. You really should check out desertharvest.com for their IC protocol.

> I am on it again. IC didn't bother me for 10 years but is now again since I

> am going through peri-menopause. The aloe I get from Desert Harvest has

> really helped with burning. I did a bladder stretching trial many years ago

> and it helped keep my bladder stretched out, eliminating urgency. Have you

> ever tried gradually stretching your bladder to increase capacity?

>

> Kenda

>

>> Kenda,

>>

>> I know I was diagnosed with IC from a urologist by a cystoscopy. The reason

>> for the leaking is because the pain from the tiny ulcers causes bladder

>> spasms. I don't leak unless I have a full bladder and then it gets desparate

>> to find a restroom. The urologist explained to me that a normal bladder has a

>> protective mucus lining because of the acidity of urine. A person with IC,

>> can no longer create this mucus lining, thus the urine burns ulcers on the

>> bladder wall. He put me on Elmiron and I was on it for almost three years.

>> It worked great. He said, either this drug makes a protective lining or it

>> helps the body make one ( I cannot remember which). When I got sick from the

>> implants, my doctor put me on a " drug holiday " , to see if it was my

>> medication

>> causing my fibro symptoms. He said there has been some studies linking

>> arthritis and fibro pain to Elimron. After he cleared the idea of my symptoms

>> being caused by my medications he said I could start taking it

>> again. I refused to go back on it. I want to " beat this " naturally if I

>> can.

>>

>>

>>

>> Kenda Skaggs wrote:

>> Hi ,

>>

>> As far as I know, leaking isn't a part of IC symptoms. I don't know how

>> important a correct diagnosis is for women here, especially if they choose

>> not to use mainstream medicine and choose to use alternative methods but I

>> have read a few symptoms here that are not IC related, such as cysts in the

>> bladder. IC symptoms mimic bladder infections. Here is some information on

>> IC from the ICA, the leading support group for IC patients.

>>

>> Kenda

>>

>> .

>> WHAT IS INTERSTITIAL CYSTITIS?

>> nterstitial cystitis (IC) is a chronic inflammatory condition of the

>> bladder. Its cause is unknown. " Common " cystitis, also known as a urinary

>> tract infection, is caused by bacteria and is usually successfully treated

>> with antibiotics. Unlike common cystitis, IC is believed not to be caused by

>> bacteria and does not respond to conventional antibiotic therapy. It is

>> important to note that IC is not a psychosomatic disorder nor is it caused

>> by stress.

>>

>> WHO IS AFFECTED?

>> IC can affect people of any age, race or sex. It is, however, most commonly

>> found in women. Recent epidemiological data suggest that there may be

>> greater than 700,000 cases of IC in the US.

>>

>> SYMPTOMS

>> Some or all of these symptoms may be present:

>>

>> FREQUENCY: Day and/or night frequency of urination (up to 60 times a day in

>> severe cases). In early or very mild cases, frequency is sometimes the only

>> symptom.

>>

>> URGENCY: The sensation of having to urinate immediately, which may also be

>> accompanied by pain, pressure or spasms.

>>

>> PAIN: Can be in the lower abdominal, urethral or vaginal area. Pain is also

>> frequently associated with sexual intercourse. Men with IC may experience

>> testicular, scrotal and/or perineal pain, and painful ejaculation.

>>

>> OTHER DISORDERS: Some patients also report muscle and joint pain, migraines,

>> allergic reactions and gastrointestinal problems, as well as the more common

>> symptoms of IC described above. It appears that IC has an as yet unexplained

>> association with certain other chronic diseases and pain syndromes such as

>> vulvar vestibulitis, fibromyalgia and irritable bowel syndrome. Many IC

>> patients, however, have only bladder symptoms.

>>

>> DIAGNOSIS

>> Most IC patients have difficulty obtaining a diagnosis. To make a proper

>> diagnosis of IC, a urologist must follow these steps:

>>

>> Take urine cultures to determine if there is a bacterial infection present.

>>

>> Rule out other diseases and/or conditions that have symptoms resembling IC.

>> These diseases may include bladder cancer, kidney problems, tuberculosis,

>> vaginal infections, sexually transmitted diseases, endometriosis, radiation

>> cystitis and neurological disorders.

>>

>> Perform a cystoscopy with hydrodistention under general anesthesia if no

>> infection is present and no other disorder is discovered. If distention

>> under anesthesia is not performed, the diagnosis of IC may be missed.

>> Cystoscopy during a routine office visit may not reveal the characteristic

>> abnormalities of IC and can be painful for those who have IC. It is

>> necessary to distend the bladder under general or regional anesthesia in

>> order to see the pinpoint hemorrhages on the bladder wall that are the

>> hallmark of this disease. A biopsy of the bladder wall may be necessary at

>> this time to rule out other diseases such as bladder cancer and to assist in

>> the diagnosis of IC. IC is not associated with bladder cancer.

>>

>> TREATMENTS

>> At this time there is no cure for IC, nor is there an effective treatment

>> which works for everyone. However, a vast majority of IC patients are helped

>> by one or more of the following treatments:

>>

>> ORAL MEDICATIONS

>>

>> ELMIRON® (pentosan polysulfate sodium): Elmiron received FDA approval in

>> 1996. It is the only oral medication approved specifically for use in IC. It

>> is believed to work by repairing a thin or damaged bladder lining.

>>

>> ANTIDEPRESSANTS: Tricyclic antidepressants such as Elavil® (amitriptyline)

>> have been shown to help with both the pain and frequency of IC. In IC, these

>> medications are used for their anti-pain properties, not as a treatment for

>> depression.

>>

>> OTHER ORAL MEDICATIONS: These include anti-inflammatory agents,

>> antispasmodics, bladder analgesics, such as Urimax®, antihistamines, and

>> muscle relaxants.

>>

>> BLADDER INSTILLATIONS

>>

>> BLADDER DISTENTION: The bladder is stretched by filling it with water under

>> general anesthesia. This is part of the diagnostic procedure for IC, and may

>> be therapeutic as well.

>>

>> DMSO (dimethyl sulfoxide): This medication is instilled directly into the

>> bladder. It is believed to work as an anti-inflammatory agent and therefore

>> reduces pain. DMSO can be mixed with steroids, heparin, and/or local

>> anesthetics to form a bladder " cocktail. "

>>

>> BCG (bacillus Calmette-Guerin): This experimental treatment is currently in

>> the clinical trial phase and is not yet approved for IC by the FDA. It

>> appears to work by boosting the immune system.

>>

>> CYSTISTAT® (hyaluronic acid): This medication is also in clinical trials and

>> is not yet approved for use in IC in the United States. It is thought to

>> work by replacing the defective lining of the bladder. Efficacy is not known

>> at this time.

>>

>> OTHER BLADDER INSTILLATIONS Clorpactin WCS-90 (oxychlorosene sodium), can be

>> very painful and requires general anesthesia, although it has been used in

>> dilute form in an office setting. Silver Nitrate is used infrequently and

>> considered an outdated therapy.

>>

>> OTHER TREATMENTS

>>

>> DIET: Eliminating certain foods (acidic, spicy) may decrease the severity of

>> IC symptoms. Also, smoking, drinking coffee or tea, and alcoholic beverages

>> may aggravate IC. Prelief, an over-the-counter dietary supplement, may help

>> IC patients better tolerate acid foods and beverages.

>>

>> SELF-HELP: Self-help techniques can improve the quality of life and reduce

>> the incidence and severity of flare-ups. These include changes in diet,

>> stress reduction, visualization, biofeedback, bladder retraining and

>> exercise, among others.

>>

>> ELECTRONIC NERVE STIMULATORS:

>>

>> Transcutaneous Electrical Nerve Stimulation (TENS): This device, which is

>> worn externally, relieves bladder pain in some people.

>>

>> Sacral Nerve Stimulation Implants: These surgically implanted devices are

>> approved for use in treating urinary incontinence, urgency and frequency.

>> They are not yet FDA-approved fo treating IC pain, but are currently

>> undergoing testing for this purpose.

>>

>> SURGERY: For a small minority of patients whose symptoms are severe and who

>> do not respond to other IC treatments, bladder surgery may be considered.

>> However in some cases, IC symptoms may not improve. Several types of surgery

>> have been used to treat IC, including cystectomy and urinary diversion.

>> Laser surgery should be reserved solely for the Hunner¹s ulcer form of IC.

>>

>> Brochures and Fact Sheets for many of these treatments are available through

>> the ICA.

>>

>>> My family doctor is treating my IC with laser acutpunture. I decided against

>>> all prescription meds, so this seems to work. I still have to wear " leak

>>> pads " every day, but the pain is very minimal. I am hoping that in time my

>>> explant will have been the best thing for my bladder.

>>>

>>>

>>>

>>> Kenda Skaggs wrote:

>>> I have IC but I have never had cysts with it. I have never heard of

>>> that

>>> before. I know that some women develop ulcers, which I have had. I think

>>> if you have cysts, you really do need to have the scope done. The scope is

>>> slightly uncomfortable but filling your bladder, generally under anesthesia,

>>> is the only way to confirm the diagnosis. I have always had improvements

>>> in symptoms following the scope because stretching the bladder improves IC

>>> symptoms for some women.

>>>

>>> I have had IC for 25 years and was diagnosed by one of the top docs, Dr.

>>> Parsons, in California. I have been all kinds of drugs, been in drug trails

>>> and have found the only drug that works for me is heparin injections.

>>> Heparin brought on a nearly complete remission of symptoms for 10 years.

>>> Unfortunately those 10 years are up now and my symptoms are intensifying

>>> again. Since I moved 20 years ago, I can't see Dr. Parsons. My new doc

>>> refuses to prescribe heparin! He said the drug is too risky because of

>>> bleeding problems. Amazing that Dr. Parsons didn't think so. I'm going to

>>> find a new urologist!

>>>

>>> Kenda

>>>

>>>> Does anyone have Interstitial Cystitis of the bladder? (The bladder and

>>>> urethra fill up with painful cysts, and chronically inflame.)

>>>>

>>>> To make a LONG story short, I've been thought based on symptoms and urine

>>>> tests by a urologist to have it for about 4 years, but I'm afraid to do the

>>>> " scope " that confirms it. (Cystoscopy, I think.) I scheduled and canceled

>>>> out

>>>> of

>>>> fear over and over, because I've been told it's painful after being scoped.

>>>> Plus there's not much they do to treat this anyway -so I don't see where it

>>>> would be worth going through just for confirmation.

>>>>

>>>> My urethra actually " fell " into my vaginal canal a few years ago, and they

>>>> can literally feel marble sized cysts all along it upon pelvic exam. (I'm

>>>> sorry if that is too much info, but I'm trying to compare with anyone

>>>> else.)

>>>> I'm

>>>> used to it, but it's worsening and I may look into it more when I look into

>>>> a

>>>> hysterectomy ---BUT I'm holding all this until later. I want to get through

>>>> the breast explant first.

>>>>

>>>> Anyway, I'm having some painful issues with it and it made me think to ask

>>>> about that, too ---since you gals have confirmed everything else for me

>>>> having

>>>> been related to these " toxic bags. " LOL

>>>>

>>>> Thanks,

>>>> Brigite

>>>

>>>

>>>

>>>

>>>

>>>

>>> ---------------------------------

>>> Groups are talking. We¹re listening. Check out the handy changes to

>>> Groups.

>>

>>

>>

>>

>>

>>

>> ---------------------------------

>> Groups are talking. We’re listening. Check out the handy changes to

>> Groups.

>

>

>

>

> Opinions expressed are NOT meant to take the place of advice given by licensed

> health care professionals. Consult your physician or licensed health care

> professional before commencing any medical treatment.

>

> " Do not let either the medical authorities or the politicians mislead you.

> Find out what the facts are, and make your own decisions about how to live a

> happy life and how to work for a better world. " - Linus ing, two-time

> Nobel Prize Winner (1954, Chemistry; 1963, Peace)

>

> See our photos website! Enter " implants " for access at this link:

> http://.shutterfly.com/action/

>

>