Re: Pam- cystoscopy, urodynamics??

[Guest guest]

In a message dated 2/2/2003 8:35:36 PM Central Standard Time,

popke001@... writes:

> Did you have the Urodynamic studies done too? The description of those sound

>

> pretty ucky and embarrassing and there isn't any sedation for those.

> <<<<

>

> Not that I know of.

Uh, you'd know if you had it! I just had it done last Friday (oh, by the way,

I'm back on list again as of today! ) And yes, it is embarrassing and

horrible ... and she said it wouldn't be painful ... she was wrong. She

couldn't get me an appointment with the doctor to get the results till late

march, she said to call and see if they can squeeze me in sooner ... because

she didn't think I should wait ... hmmm ... she also asked me mid question if

they were considering doing a hysterectomy on me ... hmmm again.

I missed the beginning of the thread because I was on no mail ...what's up?

Pk

[Guest guest]

In a message dated 2/2/2003 10:59:11 PM Eastern Standard Time,

mom2tazbug@... writes:

> she also asked me mid question if

> they were considering doing a hysterectomy on me ... hmmm again.

>

>

Welcome back !!! How are you? Didn't your doc do the procedure on you? Mine

is doing mine but I will still have to wait about 2 weeks after that for the

appt. with her for the results.

I have just been asking questions about the above procedures as Ihave to have

them. I will be sedated for the cystoscopy though but not for the urodynamic

studies.

[Guest guest]

In a message dated 2/2/2003 10:04:00 PM Central Standard Time,

Mdmssmile@... writes:

> Welcome back !!! How are you? Didn't your doc do the procedure on you? Mine

> is doing mine but I will still have to wait about 2 weeks after that for

> the

> appt. with her for the results.

> I have just been asking questions about the above procedures as Ihave to

> have

> them. I will be sedated for the cystoscopy though but not for the

> urodynamic

> studies.

>

>

>

yea, they can't sedate you because it requires you to do things like cough,

laugh, and pee on command. No, a nurse technition (she has her masters in

nursing ..not just an RN) did the test.

Oh yea ... what kind of EDS do you have? I have type 3 and my hips didn't

like the angle they had to be put at. My left hip subluxed when I was getting

off the table.

What is the cystoscopy?

What are they running the tests on you for if you don't mind my asking? You

don't have to answer if you'd rather not ... I understand.

I'm doing so so. My sons seizures are under control (which is why I went no

mail). I've been sick this whole winter, one major respiratory infection

after another. I had strep throat and influenza type A at the same time. My

Myasthenia gravis is not under good control. I have an appointment with the

nuero Wednesday to see what we can do to get better control. I'm off celebrex

because of an ulcer ... so my joints don't like me much right now. Thank God

for Ultracet!

I just missed this list so much! I was chatting on IM with Helen the other

night and realized I just had to come home whether I had the time/energy or

not.

On the good side ... I sold an article to Focus on the Family's new

publication " Focus on Your Child's Early Stages " . Focus on the Family is

supposed to be the hardest christian market to break into! So not bad for the

first try! I'm so excited. It looks like my writing career really might take

off.

Pk

[Guest guest]

At 12:36 PM 2/2/03 EST, you wrote:

What is chronic urethritis and how can they ignore it or say it was

phychological!! That

sounds terrible or unethical or something!

<<<<

I was pretty peeved that my urologist (I eventually went through three, all

men) never tried to get to the bottom of why it was happening, no cultures,

no nothing. Maybe it was a Crohn's related fistula or something, but who

knows? All I know is that after getting rid of my endometriosis and

getting my Crohn's under control it is gone now. Yippeee!

>>>>

Did you have the Urodynamic studies done too? The description of those sound

pretty ucky and embarrassing and there isn't any sedation for those.

<<<<

Not that I know of. I did have a couple of Intravenous pyelogram's (IVP's)

to moniter my kidney output, both of which showed that I retain a

significant amount of urine in my bladder even after " completely emptying. "

Big surprise there right? Perhaps it is the incomplete bladder emptying

which predisposes us (EDSers) to cystitis problems.

>>>>

> HOpe your problems are under control now. Doesn't it seeem that it 's

always

> something? I now FIRMLY believe, however, that instead of it being one

> thing after the other, they are all interrelated and no one is smart or

> aggressive enough to figure that out.

<<<<

Oh everything is related, it is just finding someone who cares enough to

try to figure it out. Women urologists are a rarity, there is not even one

in all the Twin Cities of MPLS./St. . I hope yours is a keeper!

Pam (It's snowing! Yahooo!)

[Guest guest]

In a message dated 2/2/03 9:35:07 PM Eastern Standard Time,

popke001@... writes:

<< was pretty peeved that my urologist (I eventually went through three, all

men) never tried to get to the bottom of why it was happening, no cultures,

no nothing. Maybe it was a Crohn's related fistula or something, but who

knows? All I know is that after getting rid of my endometriosis and

getting my Crohn's under control it is gone now. Yippeee! >>

Pam,

Sue Ginley here. I, too, have had massive problems with urinary tract, and

bowels. Both seem to be related. Same thing, no one could seem to get to

the bottom of it. Well, my youngest sister just started with same symptoms.

Constant urinary pain, burning, abdominal tenderness, etc. she too was just

diagnosed with IBD, and is believed to have EDS. Her burning pain, like

mine, is gone with treatment for IBD. So go figure. I believe with our

family type of EDS, IBD goes along with it. How, I can't figure out. I am

sure my son has IBD too, as he has tons of bowel problems, bleeding,

positive diagnosis of VEDS. I could have pushed for testing, but am afraid

to. If he is starting with all this so soon, I am afraid of him having a

scope unless absolutely necessary. Glad to hear there are others out there

with similar symptoms, cause I was thinking I was going crazy.

Take care,

Sue Ginley

[Guest guest]

My intercistal cystitis (sp) hasn't been a problem since I had my

endometrial abalation for fibroids. Interesting?

Lorraine

> knows? All I know is that after getting rid of my endometriosis and

> getting my Crohn's under control it is gone now. Yippeee!