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chlamydia causing i.c. symptoms

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Libby Weiser

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Feb 15, 1999, 3:00:00 AM2/15/99
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I was diagnosed with I.C. for l5 years. There is pressure, but no
pain. Recently, I discovered that the whole time I had a chlamydia
infection which has been treated. Why did the chlamydia cause the
pressure (I'm assuming that is what happened) and will my bladder ever
be "normal" now, or is the damage irreparable?

--
MZ

do...@nospam.com

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Feb 15, 1999, 3:00:00 AM2/15/99
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Whether or not an infection can cause IC is a question that so far hasn't
been answered. IC is not a curable disease --- there are pain free times
and some people are symptom free for several years at a time, but it never
truly goes away. I'm assuming you were diagnosed by hydrodistention under
anesthesia.

I hope you remain pain free.

Sending warm thoughts,
Donna

In article <36C8D8E8...@bc.sympatico.ca>,
Libby_...@bc.sympatico.ca wrote:

> MZ=90

MudcatB4

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Feb 16, 1999, 3:00:00 AM2/16/99
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Libby,
Many women I know have cured their IC and their bladders are fine now. There
is ALWAYS hope. Just don't ever give up. When you give up hope, what is left?


HUGS,
Jane
Mudc...@nospamaol.com

CATH767

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Feb 16, 1999, 3:00:00 AM2/16/99
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Hi Libby!

I believe there are many different "conditions" that can cause IC symptoms. If
your symptoms were caused by a chlamydia infection and you've cleared up the
infection, there is no reason not to think that you can't heal the rest of the
way. This is my opinion of course. But I am also of the belief that just
because "they" say IC is incurable, doesn't mean that it is...it just means
"they" haven't figured it out yet. And it doesn't mean that there aren't people
out there who have gotten themselves better from IC. Personally, I am not into
the "there's no hope for healing because the doctors say so". And if you're IC
symptoms were truly the result of an undetected infection, then there is even
more hope for your bladder to return to "normal" (in my personal opinion
anyway). If I were you, I'd stay hopeful and try to do some things to soothe
your bladder to help it heal. : )

Cath -

IC Hope for Interstitial Cystitis
http://www.angelfire.com/biz2/ichope/index.html

do...@nospam.com

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Feb 16, 1999, 3:00:00 AM2/16/99
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Cath: I agree with you up to a point. However, I haven't forgotten how
very upset I was when I thought my IC was gone because I had been symptom
free for two years. Now even when I have symptom free times, I look at it
differently. I'm grateful for every pain free day, but when the symptoms
do return, I am able to accept it more easily. I too hope that Libby's
problem is infection and not IC. And I trust my physician; if he could
cure my IC, he most certainly would.
Sending warm thoughts.
Donna


In article <19990216090207...@ngol08.aol.com>, cat...@aol.com

CATH767

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Feb 16, 1999, 3:00:00 AM2/16/99
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In article <donna-16029...@dialup322.continet.com>, do...@nospam.com
writes:

>And I trust my physician; if he could
>cure my IC, he most certainly would.

I'm sure he would if he could too Donna and that's very good that you trust
your doctor (obviously). But that really isn't what I was talking about.
Believing that your doctor would cure you if he could is very different than
understanding that just because doctors (on the whole) have not come up with a
definite answer/cure for IC, doesn't mean that there is no hope for getting
better. And that's what I was saying. I'm sorry for your experience with having
long remissions and then having your IC return and I do realize this happens
for many IC patients, but again...that is not what I was talking about either.
For me, I would rather live with hope and pass hope on to others instead of
living with the thought that my IC will return someday because "they" say so or
because that has been some IC'ers experience, but I am also of the belief that
our thoughts create our reality. So I guess we just come from two different
perspectives on this, that's all. Nothing wrong with having different
opinions.... : )

do...@nospam.com

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Feb 16, 1999, 3:00:00 AM2/16/99
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Oops! I didn't mean to say I am without hope. Actually I think I deal
pretty well with my IC --- and this just might be the "year of the cure"!

Hugs,
Donna

In article <19990216111221...@ngol06.aol.com>, cat...@aol.com

ICCORNER

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Feb 16, 1999, 3:00:00 AM2/16/99
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>I'm assuming you were diagnosed by hydrodistention under
>anesthesia.
>
The latest research has brought this "diagnostic" tool under suspicion. The
supposedly IC-specific lesions seen after distension were seen in the bladders
of normal women who were undergoing tubal ligation. I reported on this in more
detail in the most recent ICCORNER Newsletter. Actually, many uros have been
saying for years that the cysto/hydro told them nothing about IC. My urologist
has seen this herself. Even if you just go by the IC Database, you'll see that
there was NO correlation between severity of lesions and IC symptoms. You can
have a perfectly healthy looking bladder and still have the worst IC pain, and
vice versa. If this were just one study, I'd be hesitant to be convinced. But
there have been too many studies which indicate that this method does not tell
you much about your IC. After all, 10-20% of women with IC symptoms do not have
lesions. Yet, by all other measures, they have IC and respond to IC treatments.
This is one reason why I'm really hopeful about Dr. Keay's research which has
turned up a protein which appears to be unique to ICers and is found in the
urine. In fact, the protein may actually contribute to the disease because it
inhibits the repair of the bladder wall. (That's another story in the
newsletter.) And to remind everyone, this is where the money is going to from
this quarter's fundraiser for ICA research funds by the AOL IC Support group.
Please, if you have any money to spare (even a few bucks), help yourself and
every other ICer by making a donation to this research. Contact myself or Barb
(ICP...@AOL.COM) for information on this very worthy cause.

Carole


Have you subscribed to the ICCORNER NEWSLETTER? It's free, full of information,
and has a Q&A section where urologist Dr. Casey is kind enough to answer YOUR
IC questions. To subscribe or submit questions, email ICCO...@AOL.COM .

do...@nospam.com

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Feb 16, 1999, 3:00:00 AM2/16/99
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In article <19990216120426...@ng-fq1.aol.com>,
icco...@aol.com (ICCORNER) wrote:

In the meantime, what would you consider to be an adequate test to
positively diagnose IC? Mine was diagnosed by symptoms, bladder capacity,
and distention. It took the combination of all three before my uro would
tell me he was almost certain I had IC. Two years later when symptoms
returned full blast and we decided on a second distention, he told me this
verified the IC. Since many other conditions can mimic IC, and until we
have a better way to diagnose, I would never discourage anyone from going
this route --- I find I am better able to deal with it with a positive
diagnosis. Also, the distentions alleviate my symptoms to the point where
I can lead pretty near a "normal" life with my IC.
I've had 31 distentions so far over a period of 24 years and my IC has not
worsened.

I too hope that down the road there will be simpler ways to diagnose.
Also I am confident that a cure will be found.

Sending warm thoughts,
Donna

Susan

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Feb 16, 1999, 3:00:00 AM2/16/99
to
I won't go into detail about how very discouraged I am feeling
about IC, since that would only serve to bring others down.

But I would sure like to hear from others how they DO manage
to maintain hope. What do you tell yourselves, to keep going?

--Susan

In article <19990215221340...@ng27.aol.com>, mudc...@aol.comnospam
says...

Susan

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Feb 16, 1999, 3:00:00 AM2/16/99
to
Carole, thank you for reporting on this! Cystoscopy and especially
hydrodistention can be extremely painful procedures for IC
patients, and many of us have been subjected to these procedures
repeatedly. But what do they tell us? Nothing, really.

I've even been told, by a urologist not knowledgeable about
IC, that there is no reason a cystoscopy should be painful
and because I found it to be painful, I needed to seek counseling.
("let me refer you to someone who can HELP you...")
I wonder how many IC victims actually are in the counselor's
office, referred by doctors who haven't kept up with the research,
with still no medical diagnosis and not knowing the name for the
pain. It's frightening, really.

I hope you will keep us posted on Dr. Keay's research.

--Susan

says...


>
>>I'm assuming you were diagnosed by hydrodistention under
>>anesthesia.
>>
>The latest research has brought this "diagnostic" tool under suspicion. The
>supposedly IC-specific lesions seen after distension were seen in the bladders
>of normal women who were undergoing tubal ligation. I reported on this in more
>detail in the most recent ICCORNER Newsletter. Actually, many uros have been
>saying for years that the cysto/hydro told them nothing about IC. My urologist
>has seen this herself. Even if you just go by the IC Database, you'll see that
>there was NO correlation between severity of lesions and IC symptoms. You can
>have a perfectly healthy looking bladder and still have the worst IC pain, and
>vice versa. If this were just one study, I'd be hesitant to be convinced. But
>there have been too many studies which indicate that this method does not tell
>you much about your IC. After all, 10-20% of women with IC symptoms do not have
>lesions. Yet, by all other measures, they have IC and respond to IC treatments.
>This is one reason why I'm really hopeful about Dr. Keay's research which has
>turned up a protein which appears to be unique to ICers and is found in the
>urine. In fact, the protein may actually contribute to the disease because it
>inhibits the repair of the bladder wall. (That's another story in the
>newsletter.) And to remind everyone, this is where the money is going to from
>this quarter's fundraiser for ICA research funds by the AOL IC Support group.
>Please, if you have any money to spare (even a few bucks), help yourself and
>every other ICer by making a donation to this research. Contact myself or Barb
>(ICP...@AOL.COM) for information on this very worthy cause.
>
>Carole
>
>

do...@nospam.com

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Feb 16, 1999, 3:00:00 AM2/16/99
to
Susan: Just a suggestion, but there are a lot of people at the IC Network
who are also fighting a battle with IC. You are not alone --- sometimes
it helps just to know that.

The one thing that has helped me most is to learn as much as I can about
IC, various treatments available --- and how other people deal with it.

Sending healing thoughts,
Donna

--
Have you visited the IC Network <http://www.ic-network.com>. You'll find a wealth of information on treatments and research, as well as communication boards.

do...@nospam.com

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Feb 16, 1999, 3:00:00 AM2/16/99
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It sounds to me like you need to find a different urologist!

--

MudcatB4

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Feb 16, 1999, 3:00:00 AM2/16/99
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Susan,
If you really want to uplift your spirit and soul, I suggest reading "To Wake
In Tears-Understanding Interstitial Cystitis" written by our own Cath767. This
book is incredible!! Even my Uro (who is on the Medical Board at the ICA) read
it and was so impressed that he called Cath. He is now recommending the
Marshmallow Root Tea to some of his patients now.
Each day is an accomplishment for us Susan. It's one more day that WE have
survived and didn't let this disease take us over. I know how overwhelming it
can get at times. I think what helps me the most though is to 'talk' with
others that have IC and try to help them if I can. For some reason I don't
feel quite so bad after corresponding with others. And LAUGHTER!! If you can
find something to really laugh about, it does wonders for the mind. Rent a
funny movie if you have to, but try and find something to laugh about.
Hang in there Susan!! We're all cheering for you.

HUGS,
Jane

MudcatB4

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Feb 16, 1999, 3:00:00 AM2/16/99
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>I've had 31 distentions so far over a period of 24 years and my IC has not
>worsened.

My heavens!! Please, tell us more Donna.
31 distensions? Isn't there a danger of THAT damaging your bladder?

>I too hope that down the road there will be simpler ways to diagnose.

There is talk of a urine test coming out in the near future for diagnosing IC.
Won't that be the..........stuff? LOL!


HUGS,
Jane

do...@nospam.com

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Feb 16, 1999, 3:00:00 AM2/16/99
to
It's fairly simple --- I'm one of those IC'ers who has relief of symptoms
for several months following a distention --- I have had spinal anesthesia
for distentions, which works very well for me. Distentions at six to
twelve month intervals has been the one thing that has allowed me to live
an almost normal life with IC. Right now I'm seven months post op from my
last distention and still doing well. I've been self instilling heparin
and I am hoping this treatment will at least lengthen the intervals
between distentions. As for damaging my bladder, so far it has not. I
believe any damage to my bladder has been caused by IC. Before I had my
first distention, I had severe, unrelenting pain that was only relieved by
strong pain medications. Now I do very well with a mild pain medication
occasionally and have Ultram, Anaspas, and Pyridium for those times.
Donna


In article <19990216182127...@ng-fa1.aol.com>,
mudc...@aol.comnospam (MudcatB4) wrote:

--

Peter Pan of NeverNeverLand

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Feb 17, 1999, 3:00:00 AM2/17/99
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Hi Susan!!

I actually had a Dr. tell me that I didn't have an UTI and that they
pain was in my head. I remember walking out on him throwing over my
shoulder that anyone who would dream up this pain deserved to be in a
psych's office...but if anyone didn't believe the pain was real...they
needed to be there more. I remember the utter disbelief on his face.
It was priceless. I still think I should have sued him for
malpractice.<VBEG>

pp

Peter Pan of NeverNeverLand

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Feb 17, 1999, 3:00:00 AM2/17/99
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Susan, I have found that I hurt the same whether I am at home or
active. Keeping active keeps my mind busy and off the pain. If I
stay in the bed all day, I find that I hurt worse from other
things...I just plain get stiff and every movement causes more pain.

Getting enough rest and drinking 6-8 32 oz glasses of water also help
more than anything else at this point. I do take Elavil. To be quite
honest, I take it as much for the depression angle as I do the pain
angle. It has helped tremendously with the pain.

I personally have found that after initial diet changes were made that
diet doesn't really affect me that much...unless I don't get my water.
Then I am in *big* trouble.

I was put into remission for three years with DMSO treatments...but
hydro's now just make my situation infinitely worse. Think about it.
What happens when you gain weight? The skin starts getting stretch
marks because it isn't elastic enough to deal with the extra weight.
Ie, the skin is damaged. Stretching the bladder, unless I am *really*

missing something here must do the same thing. In fact, if I drink
one of those 32 oz glasses of water and don't wake up before the
bladder feels like it is about to burst...I'm going to be in trouble
for about three days. I often end up with a regular UTI...but then
again, I have a birth defect on top of the IC.

Hope this helps!!!


On Tue, 16 Feb 1999 13:28:12 -0800, do...@nospam.com wrote:

>Susan: Just a suggestion, but there are a lot of people at the IC Network
>who are also fighting a battle with IC. You are not alone --- sometimes
>it helps just to know that.

Are you inferring that we aren't fighting the same battle?

>The one thing that has helped me most is to learn as much as I can about
>IC, various treatments available --- and how other people deal with it.

I'm sorry, Donna, but I really must be missing something here. I
thought that was what Susan was asking. How do we deal with it....

pp

ICPAIN

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Feb 17, 1999, 3:00:00 AM2/17/99
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In article <donna-16029...@dialup254.continet.com>, do...@nospam.com
writes:

>As for damaging my bladder, so far it has not. I
>believe any damage to my bladder has been caused by IC. Before I had

I am so happy for all of you who have been helped by distensions of your
bladder. However, I need to warn each and every one of you that I, too, have
had many distensions over my life with IC and the last one I had brought out my
urethra when the scope was withdrawn from it. It came out at least an inch
and now I am more prone to infections with it sticking out like this. My
doctor says this is not uncommon with people having scopes all the time...Just
a warning, that not all distensions or scopings are harmless, but any means,
neither is the anesthesia, whether it is spinal or general....all anesthesia is
dangerous or can be. . BArb.

do...@nospam.com

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Feb 17, 1999, 3:00:00 AM2/17/99
to
Yes, I agree that there can be unpleasant side effects from anesthesia.
Part of my hospital job was reviewing reports of such incidents, which are
rare. And I know that there is always a possibility of something going
wrong with any surgical procedure, but if I must weigh the probability of
continuing with unrelenting pain against the remote possibility that I
might have an adverse reaction, I choose to relieve the pain. And I would
never discourage anyone from following the same route.

Is there no way your urethra can be repaired? It sounds ghastly.

Sending warm thoughts,
Donna

In article <19990217113514...@ngol02.aol.com>, icp...@aol.com
(ICPAIN) wrote:

--

Susan

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Feb 17, 1999, 3:00:00 AM2/17/99
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In article <donna-16029...@dialup239.continet.com>, do...@nospam.com
says...

>
>It sounds to me like you need to find a different urologist!


I left that one behind some time ago.

--Susan

Susan

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Feb 17, 1999, 3:00:00 AM2/17/99
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Donna,

Does spinal anesthesia mean you are awake for the procedure?

Does the spinal anesthesia provide longer-lasting pain
relief, like, say, into the next day?

I have found that I dread waking up from the anesthesia
more than anything, because that's when the pain
really begins, for me.

--Susan

says...

do...@nospam.com

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Feb 17, 1999, 3:00:00 AM2/17/99
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My uro keeps me overnight after a distention, during which time I have a
continuous bladder irrigation, which I believe substantially reduces the
pain. I choose spinal anesthesia for several reasons --- general
anesthesia makes me extremely nauseated --- I feel there's less risk with
a spinal. And I think the biggest one is that I have so little control
over this disease and being awake and able to watch the procedure on a TV
screen gives me a much clearer picture of what is going on. And between
working at the hospital and my many trips to the OR I am well acquainted
with the staff and would you believe --- when I get to the OR, we play
catch-up on what's going on.... It's much less stressful for me. Some
people would rather be asleep. The spinal usually wears off fairly
quickly in the recovery room, but the pain shot is always waiting.
Somehow if I'm awake, the pain doesn't hit as hard as if I wake up in
pain.

Hope this helps.
Hugs,
Donna

Susan

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Feb 17, 1999, 3:00:00 AM2/17/99
to
I think it's downright criminal, the anguish these guys
can create with their "suggestions," but of course
that's the easy way out for them... we leave and they
no longer have to deal with us. Sigh.

Maybe a few lawsuits wouldn't be a bad thing -- hit
'em in the wallet, that's what really hurts... ;-)

--Susan

In article <36cc5399...@news.nashville.com>, pete...@neverneverland.cc
says...


>
>Hi Susan!!
>
>I actually had a Dr. tell me that I didn't have an UTI and that they
>pain was in my head. I remember walking out on him throwing over my
>shoulder that anyone who would dream up this pain deserved to be in a
>psych's office...but if anyone didn't believe the pain was real...they
>needed to be there more. I remember the utter disbelief on his face.
>It was priceless. I still think I should have sued him for
>malpractice.<VBEG>
>
>pp
>

ICCORNER

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Feb 17, 1999, 3:00:00 AM2/17/99
to
Thanks, Barb, for sharing you horror story about the prolapsed urethra from too
many invasive procedures. I was hesitant to mention it because I knew it would
bring back painful memories to you. From what I read and what other uro's have
told me, Donna is the exception with her continued positive response to
distensions. I know that since it works for her, she'll disagree, but
distensions are not something that should be done on a regular basis precisely
because of the damage done to the urethra. Plus there is evidence that the
hydrodistension itself contributes to IC symptoms over the long term (that's in
the latest edition of the medical textbook "Interstitial Cystitis"). I strongly
support the right of people such as Donna to do those distenstions 31 times,
but my gripe has been the failure of doctors to advise their patients of the
very real risks involved. 40% of ICers get worse after distension. There is a
1% risk of bladder perforation (which is considered a minor problem). And then
you get the risk of urethral prolapse. The urethra was not designed to have
medical instruments inserted through it.

Regarding the use of the cysto/hydro as a positive diagnostic tool, what's the
point if the data shows that those lesions could be there whether or not you
have IC? And that you may not show lesions even if you do have IC? I know that
everyone wants to have a definitive diagnosis, but there is no definitive test
for IC yet. Yes, your doctor may choose to do a cysto/hydro to rule out other
diseases but it is not without risks. This is something that ICers need to be
aware of and need to take into consideration before agreeing to these tests.
Some women will consider the 40% chance of positive response to distension
(same percent as bad responses!) an acceptable chance to take for a
non-pharmaceutical treatment.

My uro already does not consider the results of the cysto/hydro as proof of IC.
I saw her last week as we discussed the results of my test from 1991 and I
asked whether she wanted to repeat it (not that I would have agreed to). And
she told me that the test was inconclusive. And painful, and expensive. And
risky. Not all uros are aware of this latest data, although I suspect that many
have already guessed at this as they think about the tests they've done
compared with the severity of the IC in each patient.

One thing I do know is that I am "exceptional" at the other end of the spectrum
from Donna. I had the cysto/hydro and it made my IC worse-permanently. I know
of a few others who this has happened to, but I realize that I represent an
extreme result. I just wish I'd had all the information available to me at the
time when I decided to go ahead with the cysto despite my great improvement in
symptoms from going on the IC diet. I will always wonder what would have
happened if I would have simply said no that fateful day. I was feeling normal
and healthy when I walked into the uro's office and I walked out a cripple.

ICCORNER

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Feb 17, 1999, 3:00:00 AM2/17/99
to
Susan:

My secret weapon is faith. God gave me IC for a reason. It has changed my life,
but now I find myself spending so much time helping others instead of making
money for a big company. The other blessing that I have found is that I
discovered that there really are some nice, honest, caring people. I got so
jaded in my work that it seemed that everyone was out for himself. Then I met a
few truly exceptional people who really do care about others. It sure is nice
knowing that there are still some nice people left in the world.

My best suggestion is if you really want to help yourself, then help others.
The love you give will be returned many times over.

Love,

Maran121

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Feb 17, 1999, 3:00:00 AM2/17/99
to
Hi Donna,
Do they give you something to sedate you before the spinal, or do you just have
the spinal? Does the needle hurt? I mean, more that an ordinary shot of
novacaine from the dentist? I would consider a spinal also, for all the same
reasons you stated. I am just more comfortable with it. Thanks.
Love,
Mary Ann

do...@nospam.com

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Feb 17, 1999, 3:00:00 AM2/17/99
to
I don't usually have much --- maybe 5 mg of valium --- but I am probably
the exception. The anesthesiologist here is pretty open about this; if
I'm feeling particularly anxious, all I have to do is ask for more. And
the needle does hurt some, but the anesthesiologists (here at least) first
inject a surface anesthetic so during the actual spinal I feel some
pressure, but no pain. And to be completely fair, I have to tell you that
once after a spinal I had a bad headache for about 24 hours, but as many
as I have had, that's not too bad. Every time I have a general, I wake up
with non-stop vomiting for hours. So I will continue with the spinals ---
and as long as the distentions work, will continue with them. I know
about the risks, but also know that I wouldn't trade my quality of life
over the past 24 years for caution, especially since I've (so far/knock on
wood) not had any significant problems.

Hugs,
Donna


In article <19990217143907...@ng-fd1.aol.com>,
mara...@aol.com (Maran121) wrote:

--

WSDJ

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Feb 17, 1999, 3:00:00 AM2/17/99
to
Hi all. I'm an RN and I've worked in pre-op, and Recovery Room for 16 years.
If you get a spinal or epidural block instead of a general, you are usually
sedated before they even start. I say "usually" meaning that the 3 places I've
worked that was the protocol. I'm just talking from where I worked, and from
where I've had all my distentions, remember.
We usually got patients in pre-op, start an IV, and then sedate you before
anything else is done. Anesthesiologists are usually quite good with the
spinal or epidural blocks, as so many people hate the general anesthesia.
Usually, the patient is given a choice of being very sedated, or just feeling
good. Again, that may not be everywhere, but most places perform the same way
closely. Anyway, you'll already be groggy when they do the spinal or epidural
block. They numb you with a medication similar to Novocaine, so the site will
be numb when they begin. Most people I've worked with say it's like a bee
sting. If it gets uncomfortable, you will be given more sedation at that
point. When they're done with that, you are usually laid down back on the
stretcher to wait until you go to the OR. Some docs like you sitting, others
laying down on your side to do the spinal or epidural.. From then on, an
anesthetist or anesthesiologist will be with you. I'm sure they'll tell you
about all the noise from monitoring you, etc. during the procedure. One thing
I learned while a patient: when the numbness begins to wear off- TELL THEM.
When it gets to pins and needles, you need pain meds to start working on you
before all your feeling comes back. If your timing is right, you're a good bit
more comfy. There are epidurals you can use for long term pain relief after,
but they're done differently and I couldn't say how that would be done from
place to place. Sorry so long. I've told this so many times I can't stop
until I think I've told you everything! Hope this helps!
Wanda

ICPAIN

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Feb 17, 1999, 3:00:00 AM2/17/99
to

In article <7achd7$n...@edrn.newsguy.com>, Susan <sta...@sprintmail.com>
writes:

>I hope you will keep us posted on Dr. Keay's research.
>

I have a very dear friend that has already been in one of Dr. Keay's programs
for research and she is to be in the next one also. She will keep me informed
as to what they find, if anything...I am excited about all of this, very much.
BArb.


ICPAIN

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Feb 17, 1999, 3:00:00 AM2/17/99
to
(Peter Pan of NeverNeverLand) writes:

>I actually had a Dr. tell me that I didn't have an UTI and that they
>pain was in my head. I remember walking out on him throwing ov

Well, I went to a lady urologist here in Austin, TX because she was new to the
field and I thought, Hey, a woman treating me...that would be good. Well, that
was three years ago and she was right out of medical school, with honors...She
politely told me that she had never seen a case of IC and doubted very much if
it even existed....How would that make all of you feel? I am so glad Martin
was with me, because he told her off in very few words....I cried, like usual
and then I smarted up and told myself that doctors can never hurt me again, not
physically or mentally. They are just people like you and I, nothing special
or maybe they are special, but no more than we are. From then on, I took
charge of my own treatment and if I did not have a doctor that went along with
me, I changed doctors. Remember that it is your body, not theirs, your pain,
not theirs...and if you don't get treated as you should, it is time to forget
them and move on.....Barb.

do...@nospam.com

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Feb 17, 1999, 3:00:00 AM2/17/99
to
In article <19990217193653...@ngol02.aol.com>, icp...@aol.com
(ICPAIN) wrote:

> In article <19990217142600...@ng138.aol.com>, icco...@aol.com


> (ICCORNER) writes:
>
> >what's the
> >point if the data shows that those lesions could be there whether or not you
> >have IC? And that you may not show lesions even if you do have IC? I know
>

> >>>>>The only point I can see and I see this readily, is that sometimes IC
> patients have bladder cancer and the sure way of knowing is to have a
> distension and biopsies to tell if you do or not. But, I have heard
from other
> IC patients who are helped by distensions also. I was as surprised as you
> about this, but it is oh so true in many cases. Barb.

Another point is that the distention is only a PART of the diagnosis.
Most uros would not consider the procedure without the presence of pain,
frequency, and the absence of infection. Other testing is a part of the
diagnosis, but other things, such as cancer, could cause the same sort of
pain that IC does. The biopsies ruled that out for me. And since my
father had bladder cancer, that was VERY important to me.
Donna

ICPAIN

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Feb 18, 1999, 3:00:00 AM2/18/99
to

In article <donna-17029...@dialup273.continet.com>, do...@nospam.com
writes:

>is there no way your urethra can be repaired? It sounds ghastly.
>

Only with surgery and that is not an option for me right now. Barb. and yes,
it is ghastly, ghastly looking and just plain ghastly.

ICPAIN

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Feb 18, 1999, 3:00:00 AM2/18/99
to

ICPAIN

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Feb 18, 1999, 3:00:00 AM2/18/99
to

In article <19990217143411...@ng138.aol.com>, icco...@aol.com
(ICCORNER) writes:

>My best suggestion is if you really want to help yourself, then help others.

I agree that this is the best medicine for IC sufferers...Reach out to others
and help those less fortunate than yourself. If you have a supportive spouse
or significant other, then reach out to those that do not. If you see the pain
in one's post, reach out to them, even if it is just talk, not give advice. It
certainly relieves my pain a lot to know that I can help others right from my
computer. Barb.

Maran121

unread,
Feb 18, 1999, 3:00:00 AM2/18/99
to
Thank you, Donna and Wanda, for the epidural information. Sounds like there
are a lot of different choices of meds that are can be given with it. I always
feel better if I know what my options are ahead of time. You are both very
sweet.
Love,
Mary Ann

Peter Pan of NeverNeverLand

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Feb 18, 1999, 3:00:00 AM2/18/99
to
I had a friend whose father was given a spinal and it "went the wrong
way." He was permanently paralized and died when she was 14 years
old.

I had another friend that had an epidural when she was in labor. It
"went the wrong way" and paralized her lungs. They had to put her on
breathing machines. Hers was not permanent.

I used to get deathly ill with general anesthesia...but it has come so
far in the past two or three years. The last time I was anesthesized
I actually came to in the operating room as they were moving me off of
the operating table. I felt no pain, was able to go to the bathroom
in less than an hour and left right after that.

My Dad woke up in the operating room and heard the Dr.'s discuss in a
very positive way his situation. He never felt any pain and
thoroughly enjoyed the conversation. Freaked the Dr.'s out until
they were convinced he wasn't feeling any pain. Then they talked to
him even though he had a tube down his throat and couldn't talk back.

The thought of a Dr. sneezing as he was putting a needle in my spine
petrifies me...and you know it has to happen one in a million
times.<VBEG>

Take care!!!

Cindy

ICCORNER

unread,
Feb 18, 1999, 3:00:00 AM2/18/99
to
Actually, cell analysis of a bladder wash can be used for detection of bladder
cancer. This does not require distension or biopsy- just the cystoscope. The
distension, when done for "diagnosis", is performed in order to make the
bladder bleed and show pinpoint hemorrhages. But normal bladders appear to show
this damage from the procedure as well. Kind of scary.

C.

ELISA COLLINS

unread,
Feb 18, 1999, 3:00:00 AM2/18/99
to
ICPAIN (icp...@aol.com) wrote:

> >>>>>The only point I can see and I see this readily, is that sometimes IC
> patients have bladder cancer and the sure way of knowing is to have a
> distension and biopsies to tell if you do or not.

I thought that to look for cancer, you don't have to have a distention -
just an ordinary cystoscopy. Am I wrong about this?

Elisa Collins
ejco...@mmm.com

Opinions expressed herein are my own and may not represent those of my employer.


do...@nospam.com

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Feb 18, 1999, 3:00:00 AM2/18/99
to


You may be right, but what about those of us who have relief from symptoms
following distentions? If we never have one, we'll not know for sure
whether we have IC, and will not know if we are in the large number of
IC'ers who are helped by the procedure.

Maggiecttr

unread,
Feb 18, 1999, 3:00:00 AM2/18/99
to
> I will always wonder what would have
>happened if I would have simply said no that fateful day.

I can relate! I'd give anything to go back in time and just try being less
impatient about getting over the effects of a couple back-to-back UTIs. My
urethra is only now starting to heal after my cystoscopy, hydro and dilation
(only a bit of topical Lidocaine for "anesthesia"!) 5 months ago. Thanks for
your honesty in letting others know of your experiences.
Healing Thoughts,
Maggie

ICPAIN

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Feb 18, 1999, 3:00:00 AM2/18/99
to

In article <36cc7b02....@news.nashville.com>, pete...@neverneverland.cc

(Peter Pan of NeverNeverLand) writes:

> had another friend that had an epidural when she was in labor. It
>"went the wrong way" and paralized her lungs. They had to put her on
>breathing machines. Hers was not permanent.

I had a friend that this happened to while giving birth to her first child.
She never recovered and was in a nursing home for 2 years before her death.
She was in a coma ever since the epidural went up instead of down. I would
love to know how and why this happens? Barb.

Susan

unread,
Feb 18, 1999, 3:00:00 AM2/18/99
to
I think the real issue is that if someone is getting
relief from symptoms because of hydrodistentions, they
are having the hydrodistention as a form of *treatment.*
It is as a *diagnostic* tool that hydrodistentions have come
under suspicion.

Some doctors want to do hydrodistentions over and over
again to watch for changes, even when they already know
that hydrodistentions cause pain rather than relief
for the patient. It's that particular scenario which
I hope will be ended by the new research.

--Susan

In article <donna-18029...@dialup346.continet.com>, do...@nospam.com
says...

do...@nospam.com

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Feb 18, 1999, 3:00:00 AM2/18/99
to
I'm assuming that you mean that the anesthetic circulated towards the
shoulders instead of towards the feet and legs. I had one spinal that
went a little high, but it was because of a dip in blood pressure --- the
anesthesiologist lowered my head, allowing the anesthetic to migrate
upward. It wore off very quickly once my feet were lowered and there were
no lasting effects.

I'm just glad I'm not planning my very first spinal anesthetic! These
horror stories would certainly make me terrified even though they are
extremely rare occurrences. In my 25 years in a nursing office in a 500+
bed hospital, I never heard of even one instance of permanent paralysis or
death as a result of a spinal. I do recall two specific instances of a
temporary foot and leg problem from spinals (part of my job was
processing risk management reports).

Please know that this is not intended as any kind of criticism of either
of you. I know you are both very supportive and that neither of you would
knowingly frighten someone who is needing anesthesia for a procedure.

Sending warm thoughts,
Donna

In article <19990218113619...@ngol07.aol.com>, icp...@aol.com
(ICPAIN) wrote:

--

Peter Pan of NeverNeverLand

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Feb 18, 1999, 3:00:00 AM2/18/99
to
I just wanted to make sure that people knew what the risks were. I
am probably one in a billion that knew two different people to have
reactions. But, it was enough to convince me a I would never go that
route...especially with the new advances in general anes.

pp

ELISA COLLINS

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Feb 18, 1999, 3:00:00 AM2/18/99
to
do...@nospam.com wrote:
> In article <7ah9c8$se4$2...@magnum.mmm.com>, ejco...@mmm.com wrote:

> > ICPAIN (icp...@aol.com) wrote:
> >
> > > >>>>>The only point I can see and I see this readily, is that sometimes IC
> > > patients have bladder cancer and the sure way of knowing is to have a
> > > distension and biopsies to tell if you do or not.
> >
> > I thought that to look for cancer, you don't have to have a distention -
> > just an ordinary cystoscopy. Am I wrong about this?

> You may be right, but what about those of us who have relief from symptoms
> following distentions?

I was just asking about testing for cancer. I wasn't necessarily arguing
against distentions.

do...@nospam.com

unread,
Feb 18, 1999, 3:00:00 AM2/18/99
to

Actually, you are in more danger on the freeway going to and from the
hospital than you are having a spinal.


In article <19990218213622...@ng-fs1.aol.com>,
icco...@aol.com (ICCORNER) wrote:

> Actually, I've heard of quite a few cases where nerve blocks into the spine
> have resulted in temporary paralysis, severe headaches, etc. I think we're
> looking at the possibility for human error. If you have someone who does this
> procedure all the time, hopefully they're a bit better. But it is a risk. I
> still see the bigger risk as those 40% that get worse from the cysto/hydro. I
> for one would be a happier person if I didn't know from experience which group
> I was in!
>
> My point is that this is a serious procedure and it has risks both from the
> anesthetic and from the actual distension (urethral prolapse, bladder rupture,
> bladder damage, etc.). These are scary things, but the patient deserves
to know
> both the possible risks and benefits. My doctor and his staff lied to me when
> they told me it was a nothing procedure. That isn't right. I don't know if I
> would eventually have had the cysto had I been told the truth about the real
> risks, but I certainly deserved the chance to choose before the damage was
> done. And I definitely would have had someone drive me that fateful day!
>
> Love,
> Carole


> Have you subscribed to the ICCORNER NEWSLETTER? It's free, full of
information,
> and has a Q&A section where urologist Dr. Casey is kind enough to answer YOUR
> IC questions. To subscribe or submit questions, email ICCO...@AOL.COM .

--

WSDJ

unread,
Feb 19, 1999, 3:00:00 AM2/19/99
to
That's true about when cystos and epidurals going "the wrong way". I don't
know as much about spinals, but the epidural may get "too high", as in the
numbing medication goes too far up and numbs the area of the spine controlling
the breathing muscles. The numbness then wears off the same way as it would in
the legs. The spinal block and epidural block are different in that the
numbing medication is given in the subdural space in the spine for the
spinal-closer to the spine itself. The epidural is inserted into the epidural
space of the spinal column. I've seen more epidurals done as there's much less
of a chance with the "spinal headache" after a procedure, and it takes less
time to insert. So, like everything, those are some possibilities that you may
encounter with "blocks" rather than general anesthesia. The occurence is
pretty rare though, in 12 yrs I remember 1 epidural with that problem, and
haven't ever seen that occur with a spinal.
General anesthesia has definitely come a long way. There are so many short
acting agents that most patients are awake, as you said, before they leave the
OR. There are so many alternatives now, they've come a long way! I never
liked epidurals, and would have rather had a general. But after my epidural
with my daughter, I preferred epidurals then. There are new meds for nausea
now too that are non-sedating. I hate it when you're ready to go, and get
sick. Anything for nausea always seemed to make me drowsy again. This new med
is great in that there's no drowsiness with it. Hope that helps, Mary Ann!


Maran121

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Feb 19, 1999, 3:00:00 AM2/19/99
to
Hi Wanda,
Are you saying that a spinal or an epidural has more chance of going the wrong
way?. This stuff does scare the bee-jeebers out of me. I feel like just
calling the whole thing off, not that I had definitely decided to do it anyway.
My doc just mentioned it once that maybe it was time to have another look
inside my bladder. I'm not sure anything would be gained, except to make sure
there are no tumors, cancer, ect. I was so nervous two years ago when I had
my first cysto under gen. anesthisia that I swore I would never do it again. I
just get so scared I make myself sick. I almost passed out when the nurse put
the IV in my wrist, before I even had one drop of meds. My husband came in and
looked at me and had tears in his eyes because he was so scared to see me that
way. (I've only seen him cry a handful of times in 20 yeras of marriage and
three of those times are when our kids were born) Nope, I don't think I want
to put him or myself through all that again. I know my doc won't pressure me.
I just hate all this *hit!!! By the way, Cindy and Barb, I don't blame you
for saying what you did. I, too, know that you are both very kind supportive
people. I asked and I wanted to know the truth. Thank you to both of you, and
also to Donna, Wanda and all who responded. I have been having a very hard
time with my IC lately and I'm scared that I won't ever get better. I know
that I have been better before and treatments have worked for me, but it is
extremely frustrating to be so tired from getting up every hour or so during
the night. It has been wearing me down lately. I am lucky to have a loving,
supportive husband and three great kids, lots of good friends, and a wonderful
doctor, but this disease is catching up with me lately. THanks for letting me
vent here. It is so nice to have a safe place to do it. Hope you are all
doing the best you can tonight, and that means, hopefully, no pain and lots of
sweet, uninterupted sleep.
Love,
Mary Ann

ICCORNER

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Feb 19, 1999, 3:00:00 AM2/19/99
to

Maggie:

My first uro did the cysto/hydro without anesthesia, which probably contributed
greatly to my body literally going into shock. I switched uros shortly
thereafter (with help from the ICA) and the new uro told me that she was used
to getting patients from the guy who butchered me! I was simply relieved at the
time to find out that no "physical" damage had been done (although I'm not even
sure of that since my IC got worse immediately after and really I've never been
the same). She also told me that it could take up to 6 months for the awful
pain and spasms from the cysto to clear up. Actually, it took 8 months (I set a
record!) and an incredible amount of pain killers and muscle relaxants.

So what did this procedure prove? My current uro says that even though the
other guy saw lesions that the procedure itself did nothing to definitively
diagnose IC. She bases her diagnosis on my symptoms, the absence of bacteria,
etc. But she doesn't think a cysto/hydro would help her diagnosis at all and
doesn't recommend them for me. The only good I see this test having done is
that I can list it as a test done for my IC since many doctors still want to
have some test data, even if the data doesn't mean anything. Ouch.

Still hurting after all these years,

ICCORNER

unread,
Feb 19, 1999, 3:00:00 AM2/19/99
to
Actually, I've heard of quite a few cases where nerve blocks into the spine
have resulted in temporary paralysis, severe headaches, etc. I think we're
looking at the possibility for human error. If you have someone who does this
procedure all the time, hopefully they're a bit better. But it is a risk. I
still see the bigger risk as those 40% that get worse from the cysto/hydro. I
for one would be a happier person if I didn't know from experience which group
I was in!

My point is that this is a serious procedure and it has risks both from the
anesthetic and from the actual distension (urethral prolapse, bladder rupture,
bladder damage, etc.). These are scary things, but the patient deserves to know
both the possible risks and benefits. My doctor and his staff lied to me when
they told me it was a nothing procedure. That isn't right. I don't know if I
would eventually have had the cysto had I been told the truth about the real
risks, but I certainly deserved the chance to choose before the damage was
done. And I definitely would have had someone drive me that fateful day!

Love,

MudcatB4

unread,
Feb 19, 1999, 3:00:00 AM2/19/99
to
Let me throw this question out there......isn't the main goal of a
hydrodistention to stretch the bladder thinking that it will increase the
bladder capacity?
Wouldn't one think that after extended hydrodistentions that it would weaken
the bladder? This is the kind of stuff that scares the crap out of me.
Like the doctor that told me today that he could order a test for me in which
the Radiologists inserts a needle into each and every disc so that they could
pin point exactly which one was causing all this pain. I asked him how would
the Rad. know? He told me that I would tell him when it hurt. Well, I could
bet money that I would do more than tell him when it hurt!
Geesh, why do some of these doctors think it's okay to inflict yet MORE pain on
our bodies? Medicine has come too far over the years to not have better
methods for testing.


Jane

MudcatB4

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Feb 19, 1999, 3:00:00 AM2/19/99
to
>From: do...@nospam.com
>Date: Thu, Feb 18, 1999 22:18 EST
>Message-id: <donna-18029...@dialup339.continet.com>


>Actually, you are in more danger on the freeway going to and from the
>hospital than you are having a spinal.


And most people that operate a motor vehicle know that. Most DMV Divisions
make that public knowledge as well as Insurance companies.
Everyone has the right to know of the dangers associated with having an
epidural or any procedure for that fact. Too often the REAL risks are not
discussed with the patient. Next time any of you go in for a procedure of any
type, take notice as to how much ACTUAL time is spent with you discussing the
dangers. I think you'll be surprised.

Jane


Mudc...@nospamaol.com

ICPAIN

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Feb 19, 1999, 3:00:00 AM2/19/99
to

In article <36ce572f....@news.nashville.com>, pete...@neverneverland.cc

(Peter Pan of NeverNeverLand) writes:

>Please know that this is not intended as any kind of criticism of either
>>of you. I know you are both very supportive and that neither of you would
>>knowingly frighten someone who is needing anesthesia for a procedure.
>>
>>Sending warm thoughts,
>>Donna

Donna, I never took this the wrong way at all. I am sorry I even posted that,
but I can tell all of you that I still choose spinals or epidurals over
generals any day of the week, just because I have such a bad reaction to
anesthesia. Barb.

MudcatB4

unread,
Feb 19, 1999, 3:00:00 AM2/19/99
to
Mary Ann,
If it helps any, I had an epidural with my hystectomy in 94 and it was great.
I didn't have that groggy feeling and the pain was almost non existent. They
kept the epidural in through the night to administer my pain meds if I needed
them. But I was up walking around that night with it still in my back. Even
the nurses were a little shocked, but I felt SUPER!
THe chances of something going wrong are very slim, but the risk is always
there. Same thing with the general. I have woken up from general to all my
front teeth being so lose that I thought they were going to fall out. Ask to
meet with the anesthesiologist a couple of days ahead of time and discuss your
options with them.
Hope this helped!!

HUGS,
Jane

do...@nospam.com

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Feb 19, 1999, 3:00:00 AM2/19/99
to
In article <19990219002429...@ngol05.aol.com>, icp...@aol.com
(ICPAIN) wrote:

Thank you, Barb. I hope you are having a pleasant day.
Hugs,
Donna

do...@nospam.com

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Feb 19, 1999, 3:00:00 AM2/19/99
to
In article <19990219002943...@ng-fr1.aol.com>,
mudc...@aol.comnospam (MudcatB4) wrote:

In the hospital where I go it's a foregone conclusion that you will meet
with an anesthesiologist a few days before surgery to review your options,
let him/her know of any medications you are taking, health problems, etc.
This is the time to ask about pre-operative medications. If you're
particularly anxious about a procedure, tell the anesthesiologist and they
will order relaxing medications for when you arrive at the hospital. And
if you're REALLY scared, most will order a sleeping pill for you for the
night before. My experience is with spinal blocks.

do...@nospam.com

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Feb 19, 1999, 3:00:00 AM2/19/99
to
At the hospital where I go they most definitely tell you about all the
risks, and you have to sign a paper that says you have been advised of the
risks and that you still chose to have the procedure, knowing that there
is risk involved. It's one of the things the Joint Commission on Hospital
Accreditation likes to see --- plus it protects hospitals and physicians
from law suits.
Donna

In article <19990219002031...@ng-fr1.aol.com>,
mudc...@aol.comnospam (MudcatB4) wrote:

--

KBurkie

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Feb 19, 1999, 3:00:00 AM2/19/99
to
Hi,
I am another person who is helped tremendously with hydrodistensions. I just
had another one on Wednesday. It was my fifth one, I have been having them
every four months. They are truly a godsend for me. After the initial couple
of days after the procedure I have no pain and it is wonderful. I am so
thankful that my doctor considers this a perfectly acceptable form of
treatment. Love, Kelly

Flantrac

unread,
Feb 19, 1999, 3:00:00 AM2/19/99
to
I am new to this group and find many of the comments enlightening. I have had
about 4-5 distentions, mainly it seems when my Dr. gets "frustrated" with my
IC. Not me, my IC. I happen to respect and like my Dr. a great deal. I have
always said, mainly in a sarcastic way, that the only thing distentions do for
me is make the pain worse for about 2 months, so that when things get back to
may "normal" pain, it doesn't seem that bad. Even though I say this with
humor, I do beleive it.

do...@nospam.com

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Feb 19, 1999, 3:00:00 AM2/19/99
to
In article <19990219104809...@ng-fz1.aol.com>, kbu...@aol.com
(KBurkie) wrote:

I hope you continue to do well with this treatment.

Hugs,
Donna

ICPAIN

unread,
Feb 19, 1999, 3:00:00 AM2/19/99
to

Sometimes I noticed that if the present doctor that I am seeing has not done a
cystoscopy and hydrodistension on me, that they are really doing it for
themselves and not me. Could I be wrong about this?. I mean, can't they just
take the old ones and look at the results of them? I really do think the last
one I had was for the Dr. and not me. He just wanted to see for himself what
my bladder looked like. When I asked him this point blank, he turned away from
me and said "well, it wouldn't hurt for me to see what I am working with."...So
I drew this conclusion?? Maybe I am wrong?? But I do know that any type of
anesthesia could possibly be dangerous and especially at my age....Barb.

ICPAIN

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Feb 19, 1999, 3:00:00 AM2/19/99
to

In article <19990219002031...@ng-fr1.aol.com>,
mudc...@aol.comnospam (MudcatB4) writes:

>ake notice as to how much ACTUAL time is spent with you discussing the
>dangers. I think you'll be surprised.

Yeah, if you were not scared enough, just read the forms you have to sign to
have the simplest procedure these days...I was even asked if I bled on the
staff, would I agree to an Aids test? I said yes if they would agree to one
before they started the procedure, just in case they bled on me. Barb.

do...@nospam.com

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Feb 19, 1999, 3:00:00 AM2/19/99
to
In article <19990219153050...@ngol02.aol.com>, icp...@aol.com
(ICPAIN) wrote:


Barb: Since I know (make that knew) a nurse who contracted Aids from a
patient's blood, and died with it, and since the law prohibits Aids
testing without the consent of the patient, I think it's understandable
that patients would be asked this. And yes, if a nurse bled on me, I
would request an Aids test.

MudcatB4

unread,
Feb 20, 1999, 3:00:00 AM2/20/99
to
>Sometimes I noticed that if the present doctor that I am seeing has not done
>a
>cystoscopy and hydrodistension on me, that they are really doing it for
>themselves and not me.

I totally agree! I'm also learning that alot of doctors don't seem to trust
what another doctor has written or even what a radiologist has read on an xray.

It's to the point where we have to diagnose ourselves, treat ourselves, etc.
I've noticed that alot of doctors seem to have quite an ego!!!
You're still a spring chicken Barb!!!! I'm sure the grandkids keep ya young!
hee!

HUGS,
Jane

ICCORNER

unread,
Feb 20, 1999, 3:00:00 AM2/20/99
to
It's great when patients are informed of all the risks. I personally haven't
had that experience yet, particularly with the various procedures done to
"help" my IC. In a perfect world, everybody would be informed of the real risks
of a procedure, but this is not a perfect world. Some people are lucky and have
good doctors who explain the risks to them. But many don't. That's one of the
benefits to a support group. I sure wish I had had one around when I had my
cysto done!

ICCORNER

unread,
Feb 20, 1999, 3:00:00 AM2/20/99
to
>Sometimes I noticed that if the present doctor that I am seeing has not done
>a
>cystoscopy and hydrodistension on me, that they are really doing it for
>themselves and not me. Could I be wrong about this?. I mean, can't they
>just
>take the old ones and look at the results of them? I really do think the
>last
>one I had was for the Dr. and not me. He just wanted to see for himself what
>my bladder looked like. When I asked him this point blank, he turned away
>from
>me and said "well, it wouldn't hurt for me to see what I am working
>with."...So
>I drew this conclusion?? Maybe I am wrong?? But I do know that any type of
>anesthesia could possibly be dangerous and especially at my age....Barb.
>
>

Barb:

When I switched uro's after that horrible experience that I had, the first
thing the new uro wanted to do (after I healed) was to repeat the cysto so she
could see for herself. That was back in 1991. Now in 1999, she says that she
doesn't believe that the procedure would tell her anything about IC based on
her own experience and on current IC research.

Also, many people have written to me with the same thing, that their new uros
want to repeat the cysto so that they can see for themselves. It's a natural
instinct for doctors, I think. It's also understandable that people want to see
for themselves, but I don't think that's appropriate for something that poses
potential risks to the patient.

Peter Pan of NeverNeverLand

unread,
Feb 22, 1999, 3:00:00 AM2/22/99
to
I asked my Dr. point blank after my last one what we gained by doing
it. He told me the lesions were worse than ever. I asked if it
wasn't a logcial deduction that they were worse since my pain was
worse. He agreed that it was. I asked if there was anything else he
learned by doing it. He said not really. There are other ways to
test for cancer and tumors these days. I told him as tactfully as I
could that I would not be put through that pain again just to see that
there were more lesions. He was a bit shocked...but I think he'll
think twice about suggesting another IC patient be put through it
without a better reason than to see if the lessions were worse. Heck,
I could even identify for him where the lesions were the worse and he
said I was dead right.

If they help you, then I understand you doing it. But if you do it
once and it doesn't help, there is no way in this world I would let
them do it a second time...now;-)

pp

Peter Pan of NeverNeverLand

unread,
Feb 22, 1999, 3:00:00 AM2/22/99
to
Donna,

NO one tells you all the risks. For example, does your hospital
inform a patient that steriods cause bone deterioration, cateracts,
etc, before giving it to a patient?

Before each hydro have you been informed that in X% of surgeries, the
urethrea becomes distended? That X% of patients die per year due to
botched anesthesia, or that X% of patients had there bladders
perforated?

I don't mean to rag on you personally, but that statement just isn't
true. I've been to the hospital with various family members four
times in the past two and weeks. Twice with my Dad, once with my
mother, one with my brother. (The idiot cut his wrist with a
knife...long story and no he wasn't trying to commit suicide.) My Dad
was given steriods even though he told them they caused his heart to
race and he didn't want them. They gave my mother steriods without
informing her. My brother and my mother were treated before they did
the paper work. And no, this wasn't all at the same hospital.

Even the pharmacist's don't give us the real risks involved in taking
medication. The steroids didn't say this medication has been shown to
cause bone deterioration and cateracts, etc.

By the way, does your hospital give the patient a copy of the Patients
Rights? If they do, I would *really* appreciate it if you would post
a copy.

HUGE HUG!!!

pp

On Fri, 19 Feb 1999 06:56:20 -0800, do...@nospam.com wrote:

>At the hospital where I go they most definitely tell you about all the
>risks, and you have to sign a paper that says you have been advised of the
>risks and that you still chose to have the procedure, knowing that there
>is risk involved. It's one of the things the Joint Commission on Hospital
>Accreditation likes to see --- plus it protects hospitals and physicians
>from law suits.
>Donna
>

>In article <19990219002031...@ng-fr1.aol.com>,


>mudc...@aol.comnospam (MudcatB4) wrote:
>
>> >From: do...@nospam.com
>> >Date: Thu, Feb 18, 1999 22:18 EST
>> >Message-id: <donna-18029...@dialup339.continet.com>
>>
>>
>> >Actually, you are in more danger on the freeway going to and from the
>> >hospital than you are having a spinal.
>>
>>
>> And most people that operate a motor vehicle know that. Most DMV Divisions
>> make that public knowledge as well as Insurance companies.
>> Everyone has the right to know of the dangers associated with having an
>> epidural or any procedure for that fact. Too often the REAL risks are not
>> discussed with the patient. Next time any of you go in for a procedure of any

>> type, take notice as to how much ACTUAL time is spent with you discussing the


>> dangers. I think you'll be surprised.
>>

>> Jane
>>
>>
>>
>>
>> Mudc...@nospamaol.com


do...@nospam.com

unread,
Feb 22, 1999, 3:00:00 AM2/22/99
to
In article <36df14f2....@news.nashville.com>,

pete...@neverneverland.cc (Peter Pan of NeverNeverLand) wrote:

> Donna,
>
> NO one tells you all the risks. For example, does your hospital
> inform a patient that steriods cause bone deterioration, cateracts,
> etc, before giving it to a patient?

My hospital didn't, but I wasn't given steroids in the hospital. The
pharmacy does give me information sheets, which list the risks for
steroids. And yes, cataracts may result. And I had cataracts removed 18
months ago (it took less than 15 minutes for each eye). And I can see much
better than any time in my adult life --- even got the corrective lens
requirement lifted from my drivers' license.

> Before each hydro have you been informed that in X% of surgeries, the
> urethrea becomes distended? That X% of patients die per year due to
> botched anesthesia, or that X% of patients had there bladders
> perforated?

I have to admit that I've never been told percentages, but have been told
that there are incidences when patients die while under anesthesia. My
uro told me there is always the chance of perforation. And I've only
heard of one other person with a distended urethra.

>
> I don't mean to rag on you personally, but that statement just isn't
> true. I've been to the hospital with various family members four
> times in the past two and weeks. Twice with my Dad, once with my
> mother, one with my brother. (The idiot cut his wrist with a
> knife...long story and no he wasn't trying to commit suicide.) My Dad
> was given steriods even though he told them they caused his heart to
> race and he didn't want them. They gave my mother steriods without
> informing her. My brother and my mother were treated before they did
> the paper work. And no, this wasn't all at the same hospital.

I'm sorry you've had bad experiences with hospitals. And I do wear a
medic alert indicating I am allergic to penicillin and sulfa as protection
against being given either of these meds in the event of an accident or ?
if I couldn't tell them that.

>
> Even the pharmacist's don't give us the real risks involved in taking
> medication. The steroids didn't say this medication has been shown to
> cause bone deterioration and cateracts, etc.

Maybe it's different in Oregon, but we always get an information sheet
with our prescriptions --- plus in Oregon if you get a new prescription,
the pharmacist is required to "counsel" you and answer your questions.

>
> By the way, does your hospital give the patient a copy of the Patients
> Rights? If they do, I would *really* appreciate it if you would post
> a copy.

Yes, they do --- every patient is given one --- and if I still have a copy
will be happy to post it. I have so many patient information packets that
I usually discard on the way out.

Hugs back to you.

Donna

--

CATH767

unread,
Feb 22, 1999, 3:00:00 AM2/22/99
to

Wow Donna...you have some great hospitals in Oregon! We don't have any of that
kind of thing here where I live. I have never been told of the risks of
anesthia and I for sure was never told about the risks of hydrodistention or
anything! And I'm not sure if they even ever heard of a Patients Bill of
Rights here in Cleveland. I'll have to fly to Oregon next time I need
surgery...hee!

Cath -

IC Hope for Interstitial Cystitis
http://www.angelfire.com/biz2/ichope/index.html

do...@nospam.com

unread,
Feb 22, 1999, 3:00:00 AM2/22/99
to
Let me know and I'll come visit you! By the way, even if you meet up with
my caring uro and anesthesiologists who tell you about risks (to protect
themselves from law suits, I'm sure) --- you'll be ready to go back to
Cleveland after you deal with the patient billing process! Those folks
are out for blood!

:)
Donna

In article <19990222101658...@ngol02.aol.com>, cat...@aol.com
(CATH767) wrote:

--

MudcatB4

unread,
Feb 23, 1999, 3:00:00 AM2/23/99
to
>Maybe it's different in Oregon, but we always get an information sheet
>with our prescriptions

We get those here in North Carolina too. However, I have found that they list
the minimal amount of possible side effects. If you check out side effects for
yourself on the web you'll find that there is alot more that are not listed on
the sheet.


Jane
ICACURECOMING

Andy Dann

unread,
Feb 24, 1999, 3:00:00 AM2/24/99
to

> I have never been told of the risks of
> anesthia and I for sure was never told about the risks of hydrodistention
or
> anything!

I have to agree here - I brought up the risk associated with
hydrodistension, especially perforation or tearing to the bladder, and the
surgeon said it doesn't happen except in people with completely scarred
bladders... Hmmm. As for anaestesia - that's why I didn't want the
cysto/hydro and why I don't want a biopsy - I know a little too much about
anaesthetic agents for my own good.

Hugs to all,

Andy.

do...@nospam.com

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Feb 24, 1999, 3:00:00 AM2/24/99
to
I know it can be a tough decision to have surgical procedures. Everyone
just has to do their own research and make their own choices. When I had
my first distention, I was in so much pain that I figured it was worth any
risk. And since my father had bladder cancer, I was very much afraid that
I might too. It was a real relief to know that I didn't.

With wishes for a pain-free day,
Donna

In article <01be6016$5de9c120$4601a8c0@verbal>, "Andy Dann"
<an...@wibble.moose-hoose.demon.co.uk> wrote:

--

KBurkie

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Feb 24, 1999, 3:00:00 AM2/24/99
to
I agree with Donna each person needs to decide what is most important to them.
I go under general anesthesia every four months but for me it is worth it to
live with little or no pain for four months. This is the only thing that is
helping me at this time and I agree it is a risk, but one I am willing to take.
Love, Kelly

hamza...@gmail.com

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Nov 27, 2014, 2:42:47 AM11/27/14
to
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