Re: potassium sensitivity test

[Guest guest]

kim,i have decades worth of experience with bladder pain issues and was diagnosed as havingic after having a hideously painful cystoscopy years ago. given your hesitancy and your history of adverse reactions to the cystoscopy, my advicewould be to cancel the test. from everything i've read, the potassium test is unnecessary and often very painful (i've heard the term " barbaric " attached to it), so why do it? what would it tell you that you don't already know? you've already had a cystoscopy that showed nothing, sowhy subject yourself to something that has the potential to cause pain and a return of symptoms?just my 2 cents' worth.hollisHi, I've been lurking on this list for a couple weeks. I joined because I have LS and vestibulitis and was in a lot of pain from the vestibulitis. But I have responded well to E & T and am feeling much improved. I also have Irritable Bowel and now my dr wants to test me for Interstitial Cystitis. I had a cytoscopy a year and a half ago during a two year period of recurrent UTIs. It showed no signs of IC but was very painful and left me with another UTI. Has anyone on this list taken the potassium sensitivity test? I am scheduled to have it tomorrow and am very nervous. I have been UTI free for six months and don't want to start that cycle again. Thanks, Kim -- Religion is not in any book, but in the human heart -- Theodore

[Guest guest]

Potassium challenge test is also not a gold standard test for IC, nor is its

accuracy rate that good.

Also, with cystoscopy to check for IC that has to be done under general

anesthesia because of the kind of pain can occur especially if hydrodistension

is done at the same time.

Kristy

>

> Hi,

>

> I've been lurking on this list for a couple weeks. I

> joined because I have LS and vestibulitis and was in a lot

> of pain from the vestibulitis. But I have responded well to

> E&T and am feeling much improved.

>

> I also have Irritable Bowel and now my dr wants to test me

> for Interstitial Cystitis. I had a cytoscopy a year and a

> half ago during a two year period of recurrent UTIs. It

> showed no signs of IC but was very painful and left me with

> another UTI.

>

> Has anyone on this list taken the potassium sensitivity

> test? I am scheduled to have it tomorrow and am very

> nervous. I have been UTI free for six months and don't

> want to start that cycle again.

>

> Thanks,

> Kim

>

> -- Religion is not in any book, but in the human heart --

> Theodore

[Guest guest]

When I told my urologist that I got a bladder infection everytime I ate gluten she said that the gluten changed the chemical make up of the bladder so the bacteria could grow.

Arline

Hi,

I've been lurking on this list for a couple weeks. I joined because I have LS and vestibulitis and was in a lot of pain from the vestibulitis. But I have responded well to E & T and am feeling much improved.

I also have Irritable Bowel and now my dr wants to test me for Interstitial Cystitis. I had a cytoscopy a year and a half ago during a two year period of recurrent UTIs. It showed no signs of IC but was very painful and left me with another UTI.

Has anyone on this list taken the potassium sensitivity test? I am scheduled to have it tomorrow and am very nervous. I have been UTI free for six months and don't want to start that cycle again.

Thanks,

Kim

--

Religion is not in any book, but in the human heart -- Theodore

[Guest guest]

sorry for the long post...

Hey Arline,

thanks for that info. I had heard of vulvodynia having a link to

gluten issues but didn't know it could be linked to UTIs.

Interesting.I have burning every time I urinate but no UTI so maybe

I should try to cut out gluten and see what happens.I've tried that

so many times before and either a. failed to actually do cut it all

out perfectly or b. saw no difference in vulvar pain but I wasn't

actually thinking about the urinary pain so I didn't look for a

correlation there. Can you tell me how long you went off gluten

before you saw a change in the UTI status? And how quickly a UTI

comes on if you eat gluten?

To the person who wrote this initially:

I had a cystoscopy a couple of months ago which left my vulvar area

burning for three days, but only when I peed. The cystoscopy itself

wasn't all that painful, it was whatever disinfectant they put

around the area that made me burn. This was before I was diagnosed

with Vulvar Vestibulitis (although mild). Just wanted to say that

the nurse could have used distilled water instead of whatever

chemical and that would have prevented the burn. So that's a word of

advice to everyone out there - to just have the nurse use distilled

water to disinfect.

To everyone else, I recently saw Dr. Hamod (dvpcenter.com) who is a

vulvar pain specialist out of Baltimore. I went in once and he

diagnosed me with mild vulvar vestibulitis and vaginismus. (yay,

finally got a real diagnosis!!!) Second time he took cultures. I'm

supposed to go back in Dec to discuss culture results and look at

the treatment options. I told him that my vulvar pain goes away

during the second half of my cycle, and he said, " That makes no

sense. " I am wondering if any of you have any advice for how to deal

with this. Also am wondering if any of you have seen him, and if you

know the protocol of what he will advise me to do for VVS so I can

come prepared to the next meeting. Thank you for any info you can

give me! I'm 31 years old and still have a monthly cycle (but it

ranges from 28 to 42 days). All hormone tests come back as " normal "

according to my gyn.

shannon

>

> Hi,

>

> I've been lurking on this list for a couple weeks. I joined

because I have LS and vestibulitis and was in a lot of pain from the

vestibulitis. But I have responded well to E&T and am feeling much

improved.

>

> I also have Irritable Bowel and now my dr wants to test me for

Interstitial Cystitis. I had a cytoscopy a year and a half ago

during a two year period of recurrent UTIs. It showed no signs of IC

but was very painful and left me with another UTI.

>

> Has anyone on this list taken the potassium sensitivity test? I am

scheduled to have it tomorrow and am very nervous. I have been UTI

free for six months and don't want to start that cycle again.

>

> Thanks,

> Kim

>

> --

> Religion is not in any book, but in the human heart -- Theodore

>

[Guest guest]

Hi ,

I don't know how long it took but I do know that of all the vulvar problems I

had--LS, burning, clitoral pain, etc. that they are all gone. My bladder

infections are mostly gone too but I have to be careful with it all. It takes a

long time to get all the antibodies out of your body but if that is the problem

nothing else will do much for you in the long run.

I can't really recommend that anybody try a gluten free diet without proper

testing because I have found that unless they are tested and are positive it is

too hard to do and even then denial and refusal to do it are big factors. It is

hard--hard--hard. Even if you had only a gluten sensitivity test at Enterolab

(and that is the only place I consider worth it to seek testing) it would be

valuable for you.

Being sensitive to gluten means that one is eating a toxin when they eat the

stuff and the body is being poisoned and antibodies are formed to fight against

it which also manage to attack the rest of the body. If one is eating a toxin it

seems to me to be a no brainer to think that it could destroy the lining of

one's bladder since it passes through there?

I hope you pursue this. Don't waste your time with the blood tests. They can't

diagnose this.

Arline

>

> Subject: Re: potassium sensitivity test

> To: VulvarDisorders

> Date: Tuesday, November 25, 2008, 7:57 AM

> sorry for the long post...

>

> Hey Arline,

> thanks for that info. I had heard of vulvodynia having a

> link to

> gluten issues but didn't know it could be linked to

> UTIs.

> Interesting.I have burning every time I urinate but no UTI

> so maybe

> I should try to cut out gluten and see what

> happens.I've tried that

> so many times before and either a. failed to actually do

> cut it all

> out perfectly or b. saw no difference in vulvar pain but I

> wasn't

> actually thinking about the urinary pain so I didn't

> look for a

> correlation there. Can you tell me how long you went off

> gluten

> before you saw a change in the UTI status? And how quickly

> a UTI

> comes on if you eat gluten?

>

> To the person who wrote this initially:

> I had a cystoscopy a couple of months ago which left my

> vulvar area

> burning for three days, but only when I peed. The

> cystoscopy itself

> wasn't all that painful, it was whatever disinfectant

> they put

> around the area that made me burn. This was before I was

> diagnosed

> with Vulvar Vestibulitis (although mild). Just wanted to

> say that

> the nurse could have used distilled water instead of

> whatever

> chemical and that would have prevented the burn. So

> that's a word of

> advice to everyone out there - to just have the nurse use

> distilled

> water to disinfect.

>

> To everyone else, I recently saw Dr. Hamod (dvpcenter.com)

> who is a

> vulvar pain specialist out of Baltimore. I went in once and

> he

> diagnosed me with mild vulvar vestibulitis and vaginismus.

> (yay,

> finally got a real diagnosis!!!) Second time he took

> cultures. I'm

> supposed to go back in Dec to discuss culture results and

> look at

> the treatment options. I told him that my vulvar pain goes

> away

> during the second half of my cycle, and he said, " That

> makes no

> sense. " I am wondering if any of you have any advice

> for how to deal

> with this. Also am wondering if any of you have seen him,

> and if you

> know the protocol of what he will advise me to do for VVS

> so I can

> come prepared to the next meeting. Thank you for any info

> you can

> give me! I'm 31 years old and still have a monthly

> cycle (but it

> ranges from 28 to 42 days). All hormone tests come back as

> " normal "

> according to my gyn.

> shannon

>

>

>

>

> >

> > Hi,

> >

> > I've been lurking on this list for a couple weeks.

> I joined

> because I have LS and vestibulitis and was in a lot of pain

> from the

> vestibulitis. But I have responded well to E&T and am

> feeling much

> improved.

> >

> > I also have Irritable Bowel and now my dr wants to

> test me for

> Interstitial Cystitis. I had a cytoscopy a year and a half

> ago

> during a two year period of recurrent UTIs. It showed no

> signs of IC

> but was very painful and left me with another UTI.

> >

> > Has anyone on this list taken the potassium

> sensitivity test? I am

> scheduled to have it tomorrow and am very nervous. I have

> been UTI

> free for six months and don't want to start that cycle

> again.

> >

> > Thanks,

> > Kim

> >

> > --

> > Religion is not in any book, but in the human heart --

> Theodore

>

> >

>

>

>

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

>

> **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST,

> Thanks for your cooperation! **

>

> ***

[Guest guest]

Hi Kim,Did you have the test? If so, how did it go? I hope you are doing okay. Take Care,Chelle

[Guest guest]

Kim

I wouldn't regret that you had the test done, now atleast you can put ur mind to rest that you don't have IC.

Its nice to atleast be able to rule one potential cause of your pain.

I am seeing a myofascial/neurologist this Friday. I am anxious to get his insight into trigger points, nerve issues etc. I still wonder about the ic thing though. I have burning with urination (but I do think it is when the urine touches the skin) and pelvic tension myalgia.

Do you know, for people that have ic, is the burning with urination - when the urine touches the skin or is it from the urethra?

thanks

Carol Life should be easier. So should your homepage. Try the NEW AOL.com.

[Guest guest]

Hi Chelle and other wise women,Unfortunately my internet went down and I didn't get your replies before my appt. I went in and told the dr my doubts about the test. She said since my cystoscopy hadn't been done under anesthesia there hadn't been a full bladder distention and thus the test hadn't really answered the IC question. I told her I was concerned about another UTI and she agreed to put me on anti-biotic. So we did the test. It took her three tries to catheterize me and the results were negative for IC. No pain whatsoever. And then several hours later excruciating pain when urinating... I called the office and was told the anti-biotics she gave me didn't do the job, so I needed another Rx. The new pills worked and I am feeling better but wishing I'd never had the test...

On the question of OC, I started on the pill at 18. I went off in Nov 01 and then back on in June 06 with Yasmin. Had no problems until the fall of 2006 when I started getting a series of UTIs that my urologist blamed on low-dose OC. He prescribed estring which helped a lot. I went on the nuvaring based on my gyn's belief that it would do the same function as the estring (provide estrogen directly to the area). Then I started having tearing during sex. After one biopsy I went back with vaginal and vulvar pain and after a second biopsy with another gyn in the practice I was diagnosed with VVS and LS.

I never had these problems before I started the low-dose pills.Kim-- Religion is not in any book, but in the human heart -- Theodore