Confused...had 1st Uro appt today

[stac7_8]

Ok well I went to the URO for the first time today and this man tells me that he doesn't believe that I have IC. The reason being is because he feels that the only way to DX IC is to do a Biop of the bladder. He Laughed when I told him the way the other dr DX me. Which was to put a cath in put saline in my bladder then this med that HURT LIKE HELL. Then he put in the resuce med and all was better. Then I went back the next week and had another instill done. He Laughed I'm glad that he thought is was funny, cause I did not.

So He wants to run a few test before the Biop cause I looked at him CRAZY when he said that. The first is just a basic blood work and pee test. Then he wants to do this IVP. Which he explains to me is basically putting med in my bladder and then taking an X-ray. And at first he wanted to put in Cath and do it that way and I looked at him CRAZY

So Now I'm concered.....cause I'm not sure about having a Biop done. That scares me. I really am not sure about this doctor. I told him that I was out of my pain meds...which I am and I was very honest with him about what I have been taking. This man gave me darvacet and he only gave me 5 pills. He gave me just enough for 1 a day until my next appt. I truly wonder if he has ever treated someone with this condition. Also he told me that the Elmeron should have started to give me some relief..."the elmeron is the best thing out there for this and if it is not helping u that much then maybe u truly don't have IC"

If anyone has any thoughts on this Please Please help me I truly need it as I have this appt to see him and get the IVP done on Tuesday. Thanks for listing
__________________
Take the moment to enjoy all the little things in your life, for those are the ones we tend to forget!!

[Briza]

Hi

My main concern is that this guy sounds a little strange and that you don't sound comfortable with him or any of procedures that he's planning on doing. I dunno, but if you're anything like me, if a dr is going to be doing anything to me, I've got to feel comfortable with him/her. I literally ran out of the office of the first urologist I saw...we were definitely not a dr/patient match.

Maybe I'm totally off here??, but that's just the feeling I got when I read your post.

As for what he said about Elmiron, well, that's just plain wrong. And if you've already been dx with the Potassium Sensitivity Test, why not try some other meds first before doing whatever tests he has planned? That's where they make the $$. Having a biopsy is a wise decision, but it is your decision, and it doesn't have to be done right away.

I'm sorry if this is coming across as all negative, but I just imagined myself in that office with him, and I got a creepy feeling!
:grouphug: If I'm totally off here, just ignore this post:)

[stac7_8]

Thanks a bunch. I did feel strange in there with him. I truly felt like he did not care no bedside manner and that when he laughed at how I was DX by the other Doc it just made me feel very small u know.

I'm going to talk it over with my honey and sleep on it over the weekend!! Thanks for the message.:smile tee

[ICNDonna]

Is there a different urologist you can see for an opinion before you decide what you will do?

Donna

[Moonheart]

I hope you get a different doctor. I'm very frustrated just reading what he said to you. He's dead wrong and his ignorance is causing you to suffer. Please seek help somewhere else. :(

[PickPink]

Your uro does not sound very sympathetic or understanding. My uro made me feel that way also.. he kept saying "I know your other doctors are sure you have IC, but I'm not.. so I'm going to do all these other tests on you" I made the appointment to see him again, and then a few days later I had an appointment with a ob/gyn who specializes in IC and he said that it was definitely up to me, but if I was uncomfortable than not to go (I told him how comfortable I was). I canceled that appointment with the uro. So now I do not see that doctor any more and only see my ob/gyn. He's new to fredericksburg, but when he lived in Richmond he actually had an IC clinic where you could go in for rescue instillations whenever you needed them. He wants to open up one here too.. although I think I'm his only IC patient at the moment! He just came to fredericksburg 3 months ago.

Anyway, all I'm saying is that if you aren't comfortable with this Doctor, and you aren't confident that he is doing what is best for YOU.. then don't see him. There are plenty of other uro's out there and you will find one that is best for you. If you have been DXed with IC, and feel that he wants to do a lot of expensive tests that are only going to confirm what has already be DXed.. then don't get the tests done. No one can make you do it. And I recommend you see a doctor who understands the pain you are in and doesn't laugh at you when you explain things.

Oh and Elmiron does NOT work for every IC patient. I am trying to, but I have only been on it for a few days. A lot of ICers on here have tried Elmiron, for more than a year!, and it has not worked for them. Not every patient is the same.. and that doctor doesn't seem to understand that. Elmiron's success rate isn't that high, it's actually pretty low for an FDA approved drug. It's definitely worth trying - but don't let him feel like you are wrong because it doesn't work for you.

Good luck Stac! I hope all goes well for you!!

[jen74]

Hi.
First off, an IVP is a test to check for kidney troubles ( usually reflux). I dont get why he is ordering that test unless you have had a ton of infections in a row. It will show nothing as far as IC is concerned.
You do not need a bladder biopsy to diagnose IC. I was diagnosed just by a regular cystoscopy. This guy sounds alot like the first urologist I saw. He told me there was no such disease as IC and that only women over 50 got this type of bladder disease.
When he laughed at you, I would have asked him what he thought was so funny? It sounds like he has a big EGO issue. I would look for another doctor. The test he is wanting you to do does not make sense at all, unless of course you are having alot of bladder or kidnsy infections lately, and I mean like one right after another.
He seems ignorant about IC though. I bet he does not treat many or any IC patients as I dont see who would stay with that guy with his attitiude.
I would call him and ask why he want you to do a IVP, what his reasons are before you go through any of that.
Goos luck hon, and believe me, you are not alone, I am sure many if not all of us have run into ignorant doctors before.
Jen

[jen74]

Oh, I forgot to add, Elmiron does not work for everyone with IC. I dont know where he got his info from.
Jen

[Berkshire Road]

Run screaming in the opposite direction from this doctor, is my advice. First, you've had a potassium sensitivity test; that's considered diagnostic for IC, so you shouldn't need all these other expensive and invasive procedures he's suggesting. Second, Elmiron only works for about 37% of IC patients according to most studies, and when it does work, it can take up to six months to make any difference. And last but definitely not least, any doctor who laughs at you is treating you with blatant disrespect, and you deserve better.

It really sounds like he doesn't know much about IC, and that he also doesn't believe his patients need to be accorded basic human dignity. This is not a good match for you; trust your instincts.

[waterflow]

If you are not comforatable with him then maybe find another one? You need a doc who you can count on and not worry when some kind of test is being done. I had the IV MRI test done. They put something in the IV that when it goes through your body and hits the bladder you have that sudden extra feeling of having to pee. I had the biopsy done as well. I never had the potassium test but did have the one where they fill your bladder with water and then wait for you to tell them when you have to pee and then you pee it out in a container to measure. With my Uro I always felt safe at the hospital. He always faught with the nurses for me if need be.

[stac7_8]

First let me start out by saying THANK U to each of u :angel: I feel much better now:smile tee I'm glad that by telling u my story that it didn't sound :loco: to you guys. Because I honestly felt like he just did not care what so ever u know. I'm going to try to do some research on the computer and see if I can find an IC doc near me. I have heard of one.......from another ICer but he is REAL far for me.

But I want to say THANK U again for all the support. :smile tee :pray:

[ICKIRSTI]

Hello there, I just wanted to send you all of the love and support that I could. I have a very tender spot for unsympathetic doctor's cuz well it took me well over 10 years for just ONE to get it right. But when I found her, she looked at me, and instantly put me on her schedule to do a hydrodistention/cystoscopy (the current best and official way to diagnose I.C.) She also did a biopsy while doing that. I was diagnosed immediately and the first things she told my mother after realizing I could handle no more that 250cc's of urine?? "My, please listen to your daughter when she has to go, because well, she really has to go"... It was a godsend to meet someone who took me seriously, and who knew without even testing what she was dealing with. Unless you feel this good about your doctor.. always.. always.. get another opinion... or... if one specialist can't help... find a different specialist. I had no idea all these years it was a bladder problem.( I didn't even realize i was peeing over 80 times a day believe it or not).. so until i went to see the urologist and not the neurologist, or gynecologist, or nephrologist, I was left time after time again, with no answers and just more questions. Please don't give up, go to a sight that does doctor referrals by specialty. Don't give up and don't ever let them make you think it's in your head, or even worse.. hypochondria. God knows I let them tell me that far too long, and gone through far too many quacks to know.. that only YOU are your best advocate, and only YOU are ultimately responsible and "qualified" enough in asking and fulfilling all those questions as to, why you feel this way. P.L.U.R.

[stac7_8]

Thank u so much. I have put a lot of thought into it and did not go to the apointment today. I'm going to get in with my gyno tomorrow and see if she can referr me to someone, if not then I will just try and find a place myself. Thanks for everything!!

[Sarojini]

Good idea... glad you did not go back to that doctor. He obviously is not up on the latest research in the IC world; if he had been, he'd have known you had the potassium sensitivity test already and that it was positive, meaning you have IC.

Keep looking... sometimes it takes a while, but there will be a good doc out there somewhere for you!! :)

[Briza]

stacy
I think you've made a very wise choice to continue looking for the right dr. Most of us have had to do the same. It's frustrating, but it's so important to find one you are comfortable with and who treats you well, since IC can be a lifelong thing and you do not want to put your health in the hands of someone who isn't on the same wave length that you are, and end up feeling like you've got to do anything the dr says just out of our desperation to find something to feel better. I still haven't found a urologist that I like. My gyn is handling my IC meds, and now I'm going to a pain mgnmt clinic for the pain meds, but I'm going to renew my search for a urologist soon and it will be interesting to see who's out there, based on my past experiences with uros!
Is it your gyn who diagnosed you with the PST and who has prescribed your IC meds?
Best wishes...I'm really proud of you for sticking to your guns!

[stac7_8]

Well my 1st GYN DR. is not the one that gave me the DX. I went to this other dr cause my gyn had no clue what else to do for me. So the guy that I got DX from was a gyn and yes he did RX my IC meds.

I'm going to ask my 1st gyn, due to the fact that the 2nd gyn won't see me anymore.....i owe him money now since the instill's, if she will rx my ic meds for me and also my pain meds. She has been giving me pain meds for my female problems for years so it doesn't hurt to ask. But if she says no, then I have a back up plan....I'm going to ask her to refer me to a pain clinic.

I have my appt tomorrow so I hope all goes well

[ICKIRSTI]

Your gyno may be very sensitive to the issue and help you out much with a referral. .. I know mine always has been. She was my best advocate for quite some time, and she was always finding abnormalities in my testing(Urine,pap particularly, and even biopsies) until I finally got treated for I.C! If you have a mere cavity those test will show it and come back abnormal. So that is a great place to start. Indeed that is so good to hear! You sure sound more optimistic now and we can hope for nothing better! Best wishes and warmest regards! :angel:

[ICKIRSTI]

oops sorry... i already replied!

[stac7_8]

Thanks to all for the support!! My appt today with my gyn was RS she had an ER to handle so I won't get to see her till Monday. I will repost after that apt. But again thank you to all for the great support.

It is truly nice to have people u don't even know back u up on something....just because they know what it is like....not like my "friends" who try but have no clue. lol

:angel: