New here..VENTING...Need a doctor near Atlanta
Yep, it's me.
have seen would read it. I'm probably writing a novel here, but want
to VENT. Even if it's not read, I'll feel better.
My son is 15 & has had this for at least 3 years. I thought he just
had a UTI because he'd recently had surgery. I took him to regular MD.
They tested & he was negative. Just told us to drink cranberry juice
& lots of water.....got worse, called doctor, said he must be
constipated.....over the weekend much worse....went to hospital. they
x-rayed no, he's not full of shit (and we've been trying to tell them
all this for the past 3 years). He also had testicular pain....Mom, it
feels like somebody's kicking me! After the nurses had their giggles,
the doc told us make an appt with pediatriac urologist.
They couldn't get us in for 2 months. I thought this was too long to
wait so I took him to my hubby's urologist. My son is a big boy when he
was 12, he was 5' 11" and 190 lbs.....Doc says well, he's almost 13 and
looks like a man......must have an active sex life? Diagnosed with
non-specific urethritis. Over a period of a few months he gave him
tetracycline, that didn't work, gave him cipro (twice). He got
violently ill, I discontinued the cipro & called regular MD. Son lost
30 pounds in 2 months, I really, really got worried. Son didn't want
to eat, because it hurt when he ate. Regular MD says take him to GI
doc.
Went to GI doc, had entire work-up. I collected stoole samples (by
placing aluminum foil over toilet bowl & then freezing it to take to
lab)....yep, there's blood in his stoole.....had upper, lower &
colonoscopy with biopsies followed by CT scan. Found: bleeding ulcers
in his stomach, probably caused by all those antibiotics. Gave anti
spasm pills, which did help...GI doc was great, listened & understood.
Thought perhaps he had IBS, I said perhaps, but problem started with
burning urination & at this point have blood in urine. He said got to
pediatric uro. doc to see what they say.
Went to ped uro docs (saw 3 of them). They did VCUG. He could not
void during this procedure.....however, there was no reflux so he was
"fine". He doesn't have the frequency, urgency feelings, doesn't wet
the bed, not really enough blood in his urine, etc. They said must be
GI problem. (pediatric urologists only want to deal with bed wetters
or more serious kidney problems, if they can't be a hero they do not
want to be your doctor).
Being a teenager, my son really doesn't want to disclose information;
however, the pain was sooooo intense he told me that there was blood in
his semen & pain with that. OK, we're dealing with doctors who can
clinically handle talking about this, right? WRONG! Called pediatric
uro back. They said go to hospital that way I could get a male doc, had
been seeing women & they felt he should see man. Went to Childrens,
told them problem. The female nurse versions of Bevis & Butthead
reported this to doctor after their laughter. Doc tests him for STD's;
because he's 14 at this point & is 6 ft tall.....he must be having sex.
Tests were negative; however they felt that they should take more blood
& urine to lab to be certain. Went to doc following week. Said son has
prostatitis & this is an adult problem so I should take son to an adult
doctor. I asked for a recommendation; he said take him where ever it
was before you came here......Which translates to Mom, your son is a
whore or something???? and I only deal with kids who have real
problems, you are FIRED.
Took him back to hubby's urologist, the one who gave us the
antibiotics. He did a cystoscope & said I believe your son has
IC.....this is very rare in males, esp. his age, I don't know enough
about it to help you, but I saw what I saw. (ofcourse he did not take
photos)
Went to another 'adult' urologist. Tests for STD'S again....He said
son has prostatitis, very unlikely has IC, son should get in the hot
tub & have prostate massages. He did a sonogram of the
prostate.....yep, its enlarged......Kid's a whore. I sarcastically
told my son, YOU'RE CURED, let's go home & get in the hot tub! All
that time, why didn't we just give him a bath??????
Took him to my dad's urologist after begging them to take a child for a
patient (they're not insured or something & aren't supposed to see
kids). Felt that this was our last hope for the city of Atlanta, since
all docs are in groups; this was only group we had not seen. Told him
our story....invited him to call our last doc who did cysto.....he
didn't. He did precribe elmiron. He mentioned that we'd seen some
very good docs......I said not good enough. He explained about
prostatitis, etc., that prostate massages help, bla bla bla. I think
he didn't want to tell us that he didn't have IC & gave elmiron for
pacifier. He's done several prostate exams, did sonogram.....said son
had variocele & that's where testicular pain is coming from; had minor
surgery to repair variocele; said this would help, & variocele can
cause him to be infertile, so good thing having reapired now will let
me have grandkids later. 6 months later, still feels the same, minus
some blood flow to one of the testicles. Doc recommends
anti-depressants & psycologist. He found it unusual that my son so
'freely' talks to me about his problem. Whaaaaattttt??????? Yes, doc
thinks my son LIKES to tell us all about his penis????? (please note
my son had this for at least 6 months BEFORE he even told us). Doc
also thought that maybe Mom & Dad are fundamental religious people who
discourage masterbation and/or teenage sex, etc., etc., sicko people
who want to punish child, or something????? I really wasn't following
him on that one....... I don't think he's got any kids. Perhaps this
is all in my son's mind he says. When I refuse, he decides to have a
look at the bladder. Had another cysto on 11/1. Doc takes photos.
Apparently 3 sides of the bladder are bleeding, one fourth looks
normal, 2/4 are bleeding like IC photos I've seen on the web and 1/4 is
just a complete blur of red, blood which you can't even distinguish the
veins. Performed twice, my son's bladder held 500 cc & 600 cc's max.
Doc looks like he now needs medical attention (as he SHOULD). I also
hope he has trouble sleeping! We're going back in 14 days.
He also recommended yet another doc (who is at one of the other groups
we saw previously at Emery). This doc is supposed to know more about
IC. I was nice mom calling for just appt.....nasty appointment minimum
wage girl, asks what we need appt for. I tell her my son has IC & was
recommended by another doc. She says, how do you know he's got IC? I
don't know what made me finally snap! I did not yell. I said he was
just diagnosed by uro doc & she say's yea, how does he know? I said
probably the picutres of his BLEEDING BLADDER! She then tells me that
THEY have a test. I said we just need an appointment! I said I think I
have the only teenage male with IC. She says, lady we see loads of
patients with IC just like your son. REALLY? Is that why another
practice figured it out??? She tells me that we've seen almost EVERY
doctor in their practice. I said that doesn't say much for their
practice & just forget it we'll find a REAL doctor & by the way, where
did SHE get her PHD?
I know that the doc who did cysto will continue to try & help; as now
he feels humbled & terrible & had the prescription pad out for pain
meds for my son. I hope he also feels foolish about the all in the
mind thing too, as he was very quiet when I brought that conversation
up. My son however thanked me for trusting him & listening to him &
not thinking he was a psyco kid. We have used up the doctor supply in
Georgia. Does anyone know a doctor within a few hours drive who knows
how to treat this (perhaps AL or TN, NC or SC)? I need to know also,
what to expect? Do y'all ever get relief?
Thanks for a place to vent!
Pete
Hi there mom...I read your post with extreme interest, and the familiar
feeling I have regarding doctors and the medical arena in general (from the
doctors, on down to the sassy little bitch you mentioned at the receptionist
area). I hate it all, and you have my sympathy.
May I ask why you are doing all the coordination on this instead of you
husband. I don't mean to pry, and it may be because he's working or
something like that, but I was wondering if your son would feel more
comfortable talking to him about some of the "male" type issues. You sound
like a very good parent and I commend you on your efforts.
I can not find a cure for my current problem, and really don't have anyplace
to go, and no one to help me, but at least you sound like you have the
capability to search for a solution. I live in Maryland so I can't give you
any advice on a doctor.
You may want to write the sci.med ng (huge group that deals in generalities)
or sci.med.prostate.prostatitis ng (dead group now, like this one - was good
years ago) regarding a good uro in your area. You may get something.
I wish you the best of luck...Pete
Yep, it's me.
Thanks for the tip. I will look up the group. My husband has helped
with the efforts & takes him to the doc when he can. Hubby has been
tremendous help in talking with son & in the beginning, relayed info to
me. Also took son to all appointments in the beginning; now we share
the efforts. He spoke with our son & told him this is a medical issue
& that if he speaks clinically, docs & mom will understand. Hubby
drives a train for CSX; so works quite a bit (however insurance is like
a gold card). Since I do not work it's easier for me to take him to
most appointments.
Now I'm pretty blunt about telling the docs.....this is only thing that
gets point across. I tried to tell one doc, that it was like plumbing.
The faucett worked fine until another use was found for the faucett
(son hit puberty). Since then it's been broken, he has pain with all
uses. This doc (about 45 yr old man), told me he didn't understand
what I was talking about. I said OK, it hurts when my son takes a pee
& it hurts when he masterbates & it hurts when he ejaculates & becomes
much wose the day after! At that point, he looked at me like a FREAK
who docs now think that I like to talk with my son about masterbating!
Funny, if he was grown man, he could say it hurts when he has sex & he
would get some sympathy & understanding (also would be considered
manly). Since he doesn't have sex yet, is thought to be NOT normal for
playing with it????? Or, are the docs soooo uncomfortable with that?
Perhaps this is because I live in the south & I think they have sex
only to pro-create down here and do not masterbate (note mom & dad are
transplanted northern/midwestern people). If that docs penis works, he
needs to learn how to use it, cause he's waaay uptight! I think that
perhaps ped uro only like to help kids, cause they don't have sex
yet.....of course stupid me, when I went there I thought they would be
more in-tune with kids. If you ever heard of masterbation, it was my
family. We did it. We are the ones who INVENTED it & have given it
such a bad rap. I think there are pics drawn of my ancestors in the
Bible under the DO NOT section. Perhaps that's why docs look at me so
funny. The she-devil is here & alive in Georgia! If you have not
accepted JC as your personal savior, you better start praying fast.
I listened to Dr. Robert Evans on the ichelp.org website & I thought
this guy knows exactly what's happening & has treated many men with IC.
I called his office in NC to make an appointment. I thought we could
just do a day-trip or long weekend there. He called me himself last
night! I was shocked; then.....he recommended the office with the
bitch who stated that we'd already seen almost all of their docs. I
told him that we want to go somewhere that someone really knows what's
happening, somewhere that we will be treated with RESPECT. My son is
in PAIN. Then he told me how this guy studied under him, bla bla bla.
Then I said thanks for calling & hung up the phone; cause I started
crying.....not because I'm emotional, because I'm PISSED OFF! Really
got mad at myself for crying because it doesn't help my kid......
Anyway, Dr. Evans called back & said we got disconnected. I said no I
hung up on you; because you referred me back to where we've been. My
mission is to help my son, if u can't help, I don't have time. (did
not say what I really felt is that going to that same office is like a
dog going back to eat it's own VOMIT & I like to think of us as a
little more human than that) He tried to tell me this doc was really
good, bla bla bla.....he said he would have that doc call me & if I
still wanted to visit him in NC, he would see my son.
First I will say that the staff is a complete REFLECTION of the doctor
(or maybe this bitch is his girlfriend). I was hoping my husband would
get home so he could talk to him; but of course the doc called & left a
message on machine that he would phone back later......if u think
you're getting help u better pick up the phone or u might lose the
chance. He tells me that I hung up on his staff & I hung up on Dr.
Evans .....like I didn't know this. I told him how his staff talked to
me. He said she did not; hummm, sounds like you're calling me a liar.
You see, this guy already knows everything & you can't tell him
otherwise. He said that he's THE best doctor in the IC field & if I
want my son to see the best; then I will make an appointment. Instead
of telling him to HOLD his breath and wait for that call, I told him I
would speak to my hubby about it. My hubby (a New Yorker who usually
doesn't use his NY speech), said that doctor has a better chance of
seeing Jesus than having our son in his office. If he's so great &
wonderful, then why is he in Cartersville (aka nowhere), Georgia?
Although I've been in Bloomingdale's (wow those prices!), I've always
been a Macy's kinda gal; so I think we'll go for second best.
My hubby has an appt with his uro on 15th, son is going with him (this
is uro who first found IC, but said didn't know how to treat). We're
paying for 2 visits just so they can talk about possible solutions.
Also have appt with uro who just did cysto on afternoon of same day to
chat with him & see if he can try or is willing to treat son. Thinking
about making appt with Dr. Evans in NC. Gotta have a day or 2 to
think.
Thanks much again for place to let the steam off!
George
"Yep, it's me." <miel...@bellsouth.net> wrote in message
news:1131023777.2...@g47g2000cwa.googlegroups.com...
Hi. Sorry that you and your son have had such problems getting a
diagnosis, but I salute your tenacity. My experience with doctors and IC
is not to give up until somebody gets it right. My doctor here in
Louisville, Kentucky (Dr. David Benson - Metropolitan Urology) is the best
I know in this field). He's a really nice guy with a great bedside manner.
The best medicine for IC is patience (I'm sure someone has told you this by
now, and I know it is of little confort to your son).
Right off the bat, I have to ask you, if your husband's Uro diagnosed him
with IC (based on the Cysto - don't believe that receptionist, there is no
single definitive test for IC), did he recommend a biopsy? A diagnosis of
IC is a matter ruling out all other causes, and having the definitive
clinical demonstration of the disease. Prostatitis is another potentially
serious problem, and can cause problems in trying to diagnose IC. In my
opinion, the cystoscopic exam is the most definitive test that can be done
currently. I say this because unless they do a cysto, they don't know the
condition of the bladder lining. From your description, your son likely
has hummer ulcers on his bladder walls (a diagnostic trait of IC, although
not all IC patients have these), and by the sound of it, they are severe
(next time a receptionist gives you the third degree on things about which
she is not qualified to discuss, ask to speak to her supervisor, or file a
complaint). Having said that, the only way to know for sure if it is a
hummer ulcer is a perform a biopsy. He needs a biopsy to rule out possible
cancer. If it is benign, then it is likely a hummer ulcer, a dignostic
trait for IC.
Now, you also mentioned that he has (allegedly) prostatitis. This is rare
in a child, but I guess stranger things have happened. Ok, now for the
nitty gritty. When a person has multiple things going on down there, one
thing can exacerbate the other. For instance, a Urinary Tract Infection
(UTI) can lead to prostatitis, especially if it is accompanied with
diarrhea and/or constipation. When you are pushing so hard to have a bowel
movement, you are putting a lot of pressure not only on your colon, but on
your prostate, and in fact, your bladder. If you have a UTI and
constipation, such difficult bowel movements can cause you to push so hard
that infected urine from the bladder can back up into the prostate and
cause an infection there. If he has the hummer ulcers, it can be even
worse, because the infection can get into his blood stream and spread to
other nearby organs. So it is imperative that any infection be dealt with
ASAP to prevent complications.
So here is what I would do if I were you. Go back to the URO, and ask him
if he thinks your son has hummer ulcers, and then ask about the possibility
of cancer, and ask if he thinks a biopsy should be performed. Now, I know
this is scary but in performing the biopsy, the doctor should also
cauterize with a laser any ulcerations he finds, and that will
significantly reduce the bleeding, and aid in the healing process. And I
hate to say it, but he will likely have to go back on antibiotics to kill
any infection, and/or prevent one from occurring/recurring. If he has
bleeding ulcers, discuss this with the URO, and see what kinds of
medications are indicated for someone with bleeding ulcers. I'm almost
certain that there are some available.
The downside is that if the biopsy/cauterization is necessary, he will
initially not feel any relief. In fact, he will feel worse. But if he
sticks to his medication (the antibiotics and the elmiron WILL help in this
instance, but it takes time - up to several months, in fact. He may also
be given an antispasmotic, which will help but discolors the urine so be
prepared for discolored undergarments and bed sheets), being as young as he
is, he should heal fairly quickly, and start to feel better in a few weeks.
But realize that if it is IC, it is a disease (some say a syndrome) that he
will never fully get over. But it is treateable, which is where the
patience comes in.
Some pointers (and I know these will be difficult for a child to do): He
needs to stop drinking acidic drinks - no carbonated sodas, no orange juice
unless it is reduced/low acid juice, no caffeine, no real salty foods, etc.
Also, no acidic/spicey foods, like chile or any other Mexican foods, reduce
or eliminate tomato products altogether from his diet (as tomatos in all
forms are very acidic). One thing he can do to help raise the acidity of
his urine is to regularly take antacids. It will also help with the
symptoms. Another quite effective OTC medication is prelief, which is a
form of calcium that helps reduce the acidity of his urine, and may help
his gastric problems. The URO may also want him to go on an anti-histamine
such as atarax (a very strong one that will make him drowsy, so it is best
taken at night before he goes to bed - it will also help him to sleep), to
reduce the swelling and inflammation associated with the mast cells of his
bladder (because the mast cells are involved, some have suggested that it
is an autoimmune disease not unlike arthritis or allergies, so
anti-histamines seem to help some patients).
Now that I have given you all of this scary information, you need to
understand that I am not a doctor. I am an IC patient who has dealt with
this disease for over ten years. I have had a hummer ulcer, so I know
first-hand what your child is going through. In fact, I had it for years
before I was diagnosed. The pain of the IC still comes and goes, but is
much better today than it was just two years ago, and much better than it
was before I was diagnosed. I try to take better care of myself. I watch
what I eat and drink, and I take the medication regularly. I get regular
exercise (he should too, whenever he feels up to it). And above all, I
don't listen to what bossy receptionists have to say about my disease, and
I don't let them get to me. I hope this helps. Come back often and give us
an update. We are always willing to lend an ear, if nothing else. Best of
luck to you and your boy.
George
Yep, it's me.
said that if he would also do biopsy. However, after cysto he did not
mention hummer ulcer & I would think that he would have seen this,
right?
Regarding the prostatitis, this doc & other doc that did cysto do not
think he's got that now. They believe it becomes irritated because of
IC.
Regarding the stomach ulcers, they are gone now & GI doc has released
us. He was great....wish he was a uro. The stomach heals itself with
proper diet. Believe it or not, what I gave was a short version of all
the docs we've seen. We also had abdominal MRI done by regular
pediatritian (great guy too); unfortunately they did not look at pelvic
area because they had their own ideas & didn't want this to be pelvic;
& believed that pain was radiating from abdominal area.
When we go back on 15th will ask about anti-histamines & will find out
biopsy results. When GI doc tested his blood, he was looking for
cancer clues & they were negative.
Thanks too for the antacid tip, we'll try it. The diet is difficult,
but the pain is a reminder to stay on diet....his only downfall is sub
sandwiches. He's pretty good with it. He loves ribs & we used to take
him every birthday for them. Haven't had ribs since 11th birthday. Is
there anything besides water to drink?
I'm glad you are better with yours. Does it go in remission? Are
there times when you have no pain?
He likes to play paintball in the woods & tries to go as much as
possible. He quit playing ball because of this; hard because he now
watches his little brother play. He's become an expert video game
player, a home schooler, avid reader, a bit cynical & extremely smart.
Wants to be a lawyer, cause doctors pay them.
Thanks again.
Pete
> My hubby has an appt with his uro on 15th, son is going with him (this
> is uro who first found IC, but said didn't know how to treat). We're
> paying for 2 visits just so they can talk about possible solutions.
> Also have appt with uro who just did cysto on afternoon of same day to
> chat with him & see if he can try or is willing to treat son.
> Thinking about making appt with Dr. Evans in NC. Gotta have a day or
> 2 to think.
> Thanks much again for place to let the steam off!
You are very welcome. I don't know your first name, but please keep us
informed, and post back when you find a real doctor that can diagnose and
treat your son accordingly. I am very interested in the outcome. Take care
and the best of luck...Pete
George
> Thanks George for the good info. Before the cysto was performed, doc
> said that if he would also do biopsy. However, after cysto he did not
> mention hummer ulcer & I would think that he would have seen this,
> right?
Sometimes, you have to coax it out of them. Some doctors only tell you the
bare minimum because they think we will not understand. If he took a
biopsy, there was a reason. Ask him if he has/had a hummer ulcer.
> Regarding the prostatitis, this doc & other doc that did cysto do not
> think he's got that now.
That's good to hear.
> They believe it becomes irritated because of
> IC.
It will do that. It did it to me. But like I said, when there are
multiple things going on down there, it is hard to discern exactly what is
going on. So you treat what you know or suspect is happening, and then go
from there. Once symptoms (like the prostatitis) goes away, then you look
at the remaining symptoms, and try to determine their cause.
> Regarding the stomach ulcers, they are gone now & GI doc has released
> us. He was great....wish he was a uro. The stomach heals itself with
> proper diet. Believe it or not, what I gave was a short version of all
> the docs we've seen. We also had abdominal MRI done by regular
> pediatritian (great guy too); unfortunately they did not look at pelvic
> area because they had their own ideas & didn't want this to be pelvic;
> & believed that pain was radiating from abdominal area.
Yes, every specialist has their pet area, and it is often hard to get them
to look outside the box.
> When we go back on 15th will ask about anti-histamines & will find out
> biopsy results. When GI doc tested his blood, he was looking for
> cancer clues & they were negative.
That is good news.
> Thanks too for the antacid tip, we'll try it. The diet is difficult,
> but the pain is a reminder to stay on diet....his only downfall is sub
> sandwiches. He's pretty good with it. He loves ribs & we used to take
> him every birthday for them. Haven't had ribs since 11th birthday. Is
> there anything besides water to drink?
Well, it really is trial and error, but he should be able to drink any
juice that is advertized as "low acid", if taken in moderation. He should
be able to drink some artificial drinks like cool aid, and of course, milk.
> I'm glad you are better with yours. Does it go in remission? Are
> there times when you have no pain?
Remission is not a word I would use. There are days when it doesn't bother
me much, and days where I have a hard time just getting out of bed. I
judge whether I am better by the fact I have more days where I don't have a
lot of pain than days where I do have a lot of pain. Overall, I've gotten
better, but like I said, IC is something that doesn't really go away
completely. It is something that you have to learn to live with (i.e.,
learning how to safely reduce the pain, what foods and drinks (I forgot -
cranberry juice is fine for people who don't have this problem, but for
those who do, it can be the worst thing possible to drink - and later, when
he is old enough, alcohol is a definite no-no. It is perhaps the worst
thing for his condition) set it off, getting enough rest, and finding
appropriate medication that seems to help and that doesn't interfere with
your ability to function).
> He likes to play paintball in the woods & tries to go as much as
> possible. He quit playing ball because of this; hard because he now
> watches his little brother play. He's become an expert video game
> player, a home schooler, avid reader, a bit cynical & extremely smart.
> Wants to be a lawyer, cause doctors pay them.
>
> Thanks again.
I can understand this completely. But you should know that the more he
exercises, the stronger his muscles will become (including the muscles in
his pelvic region). I would encourage him to find some activity that will
help him gain strength, keep his heart and lungs healthy, etc. You can't
let the rest of your body go to hell just because you have excrutiating
pain in the groin. And the exercise can actually help. It would be a
recipe for further problems down the road, I think, if he doesn't get
enough exercise. None of this is easy, and I know it is hard for him. It
is hard for all of us. He's not alone. Make sure he understands that.
Knowing that others have this problem will help him to cope with it
himself.
tinasam
he's with georgia urology and is an IC specialist
tina
Yep, it's me. wrote:
Yep, it's me.
went to someone else & they diagnosed; they referred back to ga urology
saw #6 at that practice told #6 about dx & they ignored because he
believed son is too young & totally disregarded prior docs cysto. will
not give them ANY more $$. current doc (doc #9) did cysto & has agreed
to work with us. Bottom line: ga uro had 6 opportunities to help &
the last advice we got from them was zilch. Perhaps Proctor should
advise his associates on what he does.
Pete
Hi again "yep, it's me" (mom),
I reread your original post and am having a little trouble following your
son's history. How did you get to see six doctors in the same practice (GA
Urology). Rule of thumb is most practices won't let you switch doctors
(where I live - MD), unless on an emergency type basis (and even then you
usually get the "go to the ER" bullshit). An exception would be a
subspecialty within the specialty (e.g. a uro who had a subspecialty of IC).
So the bottom line is if you don't get along with one of the doctors in the
group, you are out (they have a bullshit reason for that which would take
too long to explain, and is laughable). And in my case I am screwed because
of the small community I live in (i.e. all the damn uro's, and ent's, and
most of the gastro's, and the pulmonologists, and just recently the general
surgeons, are partnered up in one group). You also mentioned the grouping
of the doctors in your OP, so you know what I mean.
So, I am curious how you saw six different uro's at GA Urology (:-?)...Pete
Dreamspinner3
went through months of the same kind of bull-crap with my doctors before I
was finally sent to a urologist & got a proper diagnosis of IC. I can't
imagine going through it but having you child suffering with it instead.
I wish I had some suggestions for you but I live in Minnesota.
Kim
"Yep, it's me." <miel...@bellsouth.net> wrote in message
news:1131023777.2...@g47g2000cwa.googlegroups.com...
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avast! Antivirus: Outbound message clean.
Virus Database (VPS): 090916-0, 09/16/2009
Tested on: 9/17/2009 9:34:43 AM
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