Grrr... New Uro doesn't belive I have IC.

[Char*Ann]

Hi, I got dx'ed with IC in April of 2004.I was seeing a good uro that was an IC specialist, then he retired,and I had another good uro,well my insurance won't let me see her anymore, and now I have to see another uro.Well,I seen him the other day and he thinks that since I do not have the hunner's ulcers, I truly do not have IC.(He has not even looked at my records,this was by conversation only,I told him I had the glomerations but not the ulcers) I guess he is one of these Dr's who doesn't believe in IC unless you have the ulcers.I have the glomerations,and all the symptoms, pain,frequency,urgency,leaking.I also have problems voiding, it is hard for me to urinate, I have to strain etc...Certain foods/drinks aggravate my bladder. I have had my bladder covered in hemmorages when I stopped taking my Elmiron for a few months, I am back on it and last distention it looked tons better.I was having distentions every 3 months, taking Elmiron and Flomax(for voiding issues) My pain and symptoms have gotten better since being on the Elmiron for over a yr.How can this help if I don't have IC? I do not think that he is right,considering the other 2 uros I had are specialist in IC, and were treating me.He is not an IC specialist.He seems to know very little about it.Has anyone else been told if they don't have the ulcers they don't have IC? I am mad. :cussing: I know I have IC! He did find that my bladder and utereus are prolapsed pretty bad, and he did some test and I can't feel/tell the difference when he was touching me with 2 wooden sticks or 1.I guess it ihas something to do with my nerves down there...not sure what term he used if any.He also said my pelvoc floor was really tense.Whatever that means.

[~*~Christine~*~]

that uro needs to do his research! Only about 9% of ICers get Hunner's Ulcers, some ICers don't even have any physical signs at all!

[Cheries]

What a joke of a doctor!! Don't waste your time. He clearly doesn't know what he's talking about. Do your research and send it to him. Wake him up a bit with the facts. He is quite mistaken that Hunners ulcers are all it takes to have IC. Geeez, is he crazy or what? Sorry, I just get so tired of this kind of pompous attitude that doctors think they know what they're talking about when they clearly don't. What if you believed what he said and discontinued treatment? I know it is a pain literally, but you would benefit in looking for someone else. I would also look into seeing a good gynecologist to deal with the prolapse. This is usually due to loss of estrogen. Get your estrogen checked as well because getting enough estrogen can stop the prolapse from worsening to the point of surgery.

[Sarojini]

I agree... only a small percentage of ICers have Hunner's Ulcers, but that does not mean the other say, 91% do not have it!!! You may be better served by finding a different doctor. I'm sure that's the LAST thing you want to hear right now after dealing with so many doc changes in a short period, but it sounds as if you will get better care if you see someone else. Don't despair... you WILL find someone who can help you :) :grouphug:

[Judith56]

I remember years ago when I moved I had to start with a new uro. He also told me that he thought it was a bad thing to be diagnosed with, and didn't beleive I had it. It had been coonfimed by two different doctors- one in Vermont and one in Boston.He scheduled a combination cysto and laparoscopy to be with a gyn, becuase he thought I had endo. I knew I didn't have that, but had the combo deal just to please him. I think the the gyn went first and found nothing and then it was the uro's turn. When I woke up I was told that before I went home I had to go to the uro's office as he needed to speak with me. At his office he told me that yes, I was right I had IC and he found something he had never seen beofre. I had bands of fiber growing in my bladder from the scarring of the IC. He referred me to a uro in NYC! So if this guy has done a cysto under anesthesia and still doesn't want to say you have IC then it is time for another opinion. Good luck. Judith

[emilyrose197377]

I know how you feel the first uro I saw for my symptom Ic didn't believe I had Ic even after my hydrodistention my gyno finally did a pst and it showed I had Ic. He was one of these old fashioned dr. that didn't believe in Ic he only treated my urinary retention. My gyno was the one that treated my Ic and my fp helped and my fp finally sent me to my new uro and he is wonderful he put me on the right combo of meds. for pain . But I still can't get rid of the burning pain. I would finally find another uro if you can.

[Char*Ann]

Thanks for all your responses! Ya I am definitely NOT going back to him.I am going to try to change my PCP so that I can get in my old uro's network again with my insurance.This guy has not done any testing on me, nor has he even looked at my past urologists records, he was going on me telling him I had IC but without the ulcers,so he was like well I don't think you turly have it then.

[Char*Ann]

Oh BTW I was already dx with IC in April of 04 and had been being treated for it with Elmiron and distentions every 3 months by my previous Uro.

[Imustpee]

I don't have Hunners and I have severe IC.....my bladder photos are posted on this site..

[Jessi3377]

I went to about 5 different doctors who couldn't figure out what was wrong with me before I was diagnosed with IC. The other doctors never even mentioned it to me! I was finally diagnosed by an IC research doctor. I have heard that they are told in medical school that IC doesn't exist, and many do not beleive in it. I honesly think that most doctors are not famaliar with IC and know nothing about it. I strongly suggest finding another doctor because how can this doctor help you if he doesn't know much about it? Good luck!!!

[Dixiefireball]

I am one of those that has hunner ucler they hurt like heck! I do know that hunner uclers can disapper with treatments. I've had mine removed many many times. My are hard headed like I am lol they keep coming back.
I hope you can find a Dr. who cares and understand IC.
Sending you hugs and prayers
Rhonda

[JaniceB]

I had no luck with the uro I went to whatsoever. My family dr originally thought I had IC and so she sent me to the uro to confirm it, and I don't think he liked a general practioner knowing more than he did! He refused to do anything for me. I ended up going back to my family dr and she prescribed my IC meds.

Janice

[SusieQ045]

honestly, i have never been to a uro. i got diagnosed with IC by my gyno. she is awesome. i think that even because a doctor doesnt specialize in IC doesnt mean that they dont know about it. its the luck of the draw. i think that even doctors the specialize in IC sometimes dont realize all the pain and uregency that goes along with it. i think that every doctor needs to realize that IC is a real problem and not everyone has every symptom that goes along with it. i think that they want to treeat every person the same and we are all different. i have more pain the urgency. some people have more urgency then pain. they need to learn how deal with patients individualy (sp) . sorry i rambled just my opinion

[jimmiesgirl]

honestly, i have never been to a uro. i got diagnosed with IC by my gyno. she is awesome. i think that even because a doctor doesnt specialize in IC doesnt mean that they dont know about it. its the luck of the draw. i think that even doctors the specialize in IC sometimes dont realize all the pain and uregency that goes along with it. i think that every doctor needs to realize that IC is a real problem and not everyone has every symptom that goes along with it. i think that they want to treeat every person the same and we are all different. i have more pain the urgency. some people have more urgency then pain. they need to learn how deal with patients individualy (sp) . sorry i rambled just my opinion


I too was finally on paper diagnosed by my gyno, I had to see two uro's but since my tests showed no ulcers I was told no IC, I even copied things off this site to take for my doc to read since he was so in the dark about it!