Re: JoAnne

[Guest guest]

In a message dated 11/14/99 10:41:52 PM Eastern Standard Time,

taurusryc@... writes:

<< I had a

> cystoscopy during this time, and I remember, even though I was

numbed,

> when they pulled the tube out of the urethra, it burned like

sh.....

> Anyway, my older sister has irritable bladder where she has to

urinate

> often and has accidents. Her doctor but her on a med that stopped

the

> frequency and accidents. I looked up irritable bladder and found

> urethral syndrome, which sounded like me. It mentioned suprapubic

pain.

> Anyone have any idea what that means?

>

> Any advice will be appreciated.

>

> Joanne

> >>

Hi Joanne,

What you are describing does sound a lot like interstitial cystitis.

Urethral syndrome is really another term used that is basically I.C. It is

possible to have both I.C. and VV at the same time. Here is some info about

interstitial cystitis.

<A HREF= " http://www.ichelp.com/ " >Interstitial Cystitis Association - Home</A>

<A HREF= " http://www.ichelp.com/WhatIsIC/welcome.html " >Interstitial

Cystitis Association - What is IC? - Index</A> The only way to diagnose

interstitial cystitis is by having an informed urologist that does a

hydrodistention/biopsy/cysto to properly look into your bladder. The

cystoscopy done in the office without anesthesia does not always find I.C.

Hope this helps.

Darlene

[Guest guest]

In a message dated 11/29/99 2:26:42 AM Eastern Standard Time,

joannepd@... writes:

<< One doctor said

chlamydia (?), and one said a urinary thing. Well, the chlamydia came

back positive. The thing is, I've had the burning since before I met

him, so I figure I maybe gave it to him. I think my ex-husband was

playing around towards the last year or so of the marriage, and after

all the GYN's and urologists I went to, none of them found chlamydia.

I'm taking an antibiotic that the doctor sent home for me, but I have to

say, I don't think I'm any better. >>

Hi JoAnne,

Have you ever had a cystoscopy/hydrodistention/biopsy done in a hospital by a

urologist? You would need to be under general anesthesia to have this done.

What you are describing sounds very much like interstitial cystitis. <A

HREF= " http://www.ichelp.com/WhatIsIC/welcome.html " >Interstitial Cystitis

Association - What is IC? - Index</A> Most of us that do have I.C. have

taken many antibiotics and have had no improvement in pain. It's also common

to feel better during urination and feel worse before and after, however this

is not always the case.

Many of us have been tested for chlamydia even knowing there was no way we

had it, only to find that we did not have it but were given antibiotics just

in case.

Good luck to you

Darlene

[Guest guest]

In a message dated 12/1/99 11:50:46 PM Eastern Standard Time,

joannepd@... writes:

<< I fell much better after urinating, but as soon as there is

anything is my bladder, it feels worse. I can't say it feels better

while I urinate. I'm going to the doctor tomorrow to test for the " C " .

I actually hope that I have it because there is a cure. I saw so many >>

Joan,

The fact that you say that as soon as there is anything in the bladder it

feels worse sounds very much like I.C. Sometimes a distention won't find it,

they have to fill the bladder twice under general anesthesia to diagnose it.

<A HREF= " http://www.ichelp.com/WhatIsIC/AnIntroductionToIC.html#Diagnosis " >In

terstitial Cystitis Association - What is IC? - An Introduction to Interstiti<

/A> I am not sure what the cure is that you mentioned but I hope you are

able to get some answers soon.

Take care

Darlene

[Guest guest]

Darlene,

I had the cystoscopy (normal), biopsy (normal), and urethrascopy

(normal). I didn't have the distension because there was no indication

of IC. I fell much better after urinating, but as soon as there is

anything is my bladder, it feels worse. I can't say it feels better

while I urinate. I'm going to the doctor tomorrow to test for the " C " .

I actually hope that I have it because there is a cure. I saw so many

urologists and GYN's. I had inteferon shots (10) around the opening. I

was the only patient that GYN had who lasted for all 10, and it did

nothing.

Anyway, this is worse than the fibro.

Thanks for support,

Joanne

[Guest guest]

My IC leader had a distention, no sign of IC, a year later, big time signs.

I did some testing for IC, no signs, had the distention, whammo, clear as

day. It does sound like IC, but be pelvic floor dysfunction as well.

Cystoscopys in office, without distention and anesthesia very rarely show the

signs.

However, I am not a big fan of cystoscopy either, hated the whole

thing..especially the wearing of the anesthesia.

Jackie

[Guest guest]

<< I actually hope that I have it because there is a cure. >>

What is the cure? You mean for IC?? Just curious! Thanks, Kathy

[Guest guest]

Jackie,

With IC, do you feel an intense burning in the vulvar/urethra area all

day? Are you most uncomfortable with tight pants, pantihose, or while

sitting? Do you also get itching like someone is stabbing you with a

needle? Does the pain go away when you lie down?

Please answer these questions when you get a chance. It would help if

you e-mail me directly because I don't always have time to go through

all the e-mails. I need to decide whether to make my next appt. with a

GYN or urologist.

Thanks, Joanne