I'm so confused

[Angel77]

My urologist finally called me back about the problems I had with ditropan. He says since the ditropan and the detrol didn't work, the only thing he would recommend is physical therapy. But I don't even understand what's wrong yet. He mentioned the possibility of IC but doesn't seem interested in diagnosing it, or ruling it out and finding out what it is. I really don't want to go through the physical therapy if I don't even know what's wrong, or if it will even help. It sounds grueling, and expensive.

I didn't even get to tell him half of what was going on, because he didn't seem to be listening. When the ditropan made it tough to pee, i strained once or twice, and quickly learned not to, but it gave me intense pain for a week. Is this normal, I don't know? The pain is not intense like it was, but it's still there, after about 2 weeks from stopping the ditropan. I've had pain before, but not for this long at a stretch, and rarely as intense as it was all last week. He didn't even let me tell him this. He cut me off before I finished a sentence.

When he mentioned IC, I looked it up, learned what it was, thought it sounded a lot like me, and got scared. Do I have it? If not, then what IS wrong with me? Should I push for a diagnosis of some kind, or do I find a different urologist? I just don't know what to do. He seems to think I should just live with it, but in the past couple years I've felt my annoying bladder get more and more annoying, and even painful at times. I get no sleep, I'm always tired, and I never feel good. I live in fear of traffic jams and places with no bathrooms. I think I've lived with it long enough, and I want some answers now.

I'm thinking of finding a different urologists, but they're all booked so heavy it would be 6 weeks before I could get an appointment. I want to know what's wrong, and he has diagnosed nothing. I feel almost like he has dismissed me now that I'm no longer a candidate for surgery. What should I do? I'm confused. This really sucks. I need some advice, please.

[vm]

If it was me (which it isn't, so take it with a grain of salt) I would schedule an appointment to meet with him in person to talk about establishing a diagnosis. Since he brought up the possibility of IC, I would ask him what kinds of things he does to diagnose that or to rule it out. Then you could ask what treatments he has suggested to IC patients in the past.

I would keep an ear out to see if he is a "one treatment fits all" kind of guy, or if he is aware of the many that are out there to try. Read up in the Patient Handbook about the many treatment options that are out there so you will be familiar with them.

After you have met with him I would go with your gut. If he seems to blow you off, that is definitely something to mull over. I think if you have a sit down meeting with him, you will have more information to base your decision on. I think you just don't have enough information right now.

You deserve a doctor who will listen to you and one who is knowledgeable about IC and the many treatments out there for it.

Keep us posted, OK?

[kelly McC]

I am sorry you are going through this. Have you talked to your primary doctor maybe they can suggest another uro or help you until you can in another one! Best wishes:pray:

[Angel77]

*sigh* I have another appointment with him on the 16th to see the results of the 24 hour test I had to do because of the stones, but I'm just getting really frustrated with him. He is listed as a "urologic surgeon" so perhaps he's not interested in having a patient around after he's done their surgery. (I had kidney stones smashed.) At first he blamed all the problems on the kidney stones, but now he says no, they're gone so shouldn't be an issue. I'm really confused about that. So what's hurting me then.

I don't have a primary doctor yet. I was without insurance for several years and am in a new area. I was told to see a urologist by a few different doctors when I went in previously. I just want to know what's wrong with me and what I can do about it! I'm thinking maybe I will have to see a different urologist. I'm just afraid of going through this all over again.

[vm]

I bet. It is frustrating to feel like you have to go back to square one again. :( If you do, just take all those records with you and hopefully it would help the next doc move more quickly. I am pulling for you and hope it all works out. Follow your gut! It knows better than anyone else once you have gathered as much info about the situation as you can. :kissing:

[kelly McC]

:grouphug: Angel :grouphug:

I had the same thing happen to me over a year ago. My problems started with a kidney stone and once I had lipotrypsy done I still had pain. I would tell your doctor your concerns .. In my case my doctor would not listen and I had to change. Starting all over again with another uro was very scarey for me I thought the same thing boy I cant go through this all over again, but I found It helped me more than hurt me. In your case I hope your doctor will listen to you and help you find the answers you are looking for!:grouphug: :grouphug: :grouphug:

[Babs RN]

:) Angel,
I,like Kelly, had the exact same thing happen. I had lithotripsy in April of last year and the pain never went away. So for a few months, they called it renal colic and patted me on the head. I kept getting horrible UTI's too. In June, they were going to put a stent in when they did the cysto/hydro combo and found moderate to severe IC with Hunner's ulcers. I also had my first DMSO treatment then too. I felt like I was crazy in between. I knew I had pain, and that is was all too real. Keep a good diary, bring your old records and stand up for yourself. You deserve it.
I'm here if you need me.


Hugs,
Barb:kiss:

[Katrina]

:grouphug: :grouphug: :grouphug: :grouphug:

Doctors not listening and not explaining things...ouch. I hope you get the answers you need and deserve.

Best Wishes,

[ICNDonna]

Before you go to your appointment with your doctor, I suggest you purchase a small spiral pad (if you don't already have one) and make a written list of questions you want to ask. Then when you see him, tell him you have some questions and refer to your notebook.

What will probably happen is that you will get your questions answered --- and I suggest you write notes to yourself so you'll remember the answers. If he does NOT answer your questions, then is plenty of time to seek a different urologist.

If you have real concerns, you might go ahead and make the appointment with someone else --- you can always cancel it after you see your current doc.

Sending warm encouraging hugs,
Donna

[Sarojini]

Hello Angel77... I'm sorry to hear you are going through all of this. It makes it even more difficult when you feel no one is listening. :(

I think you have been given some good advice by the others.... Donna's advice about taking a notepad to your appointments is a wonderful suggestion. It really helps to have all of your questions written down, and it helps to take notes!

I know it is difficult to wait to find out what is wrong, especially when you are in pain... :(

:grouphug:

Jen

[VickiB]

Hi Angel77,

I want to second vm's "go with your gut" statement. My road to diagnosis was long, through many Doctors. Some I felt didn't listen, none ever mentioned the possibility of IC. Eventually I gave up seeking help and just suffered through it. With no insurance I couldn't keep paying to hear there was nothing wrong with me. But in my gut, I knew something real was very wrong. I'd read about IC and thought, that sure sounds like what I have! After another especially painful episode had passed, I went to my family doctor and said this is real and it's got to stop! He refered me to a new uro, who after hearing my history tested me for IC, and bingo, that's what I have. He began to treat me. These days I'm so much better! All that time I spent in pain,...if only I'd persisted in my search for an answer, or at least demanded they take me more seriously. Don't give up.

Vicki

[SharonA]

Hi and Welcome...

My suggestion is a combination of all the others. Go ahead and see the uro, again, taking a list of questions but, also make an appointment with another uro. Get on the waiting list, now. The 6 weeks are going to pass anyway. You might as well pass them knowing you have an appointment with someone else to fall back on. You need and deserve to know what is wrong so you can begin to find what treatments will be of help to you...:)

[bluekar]

hi there.. i'm new to this also and not diagnosed YET so I know how you feel. I think Sharon A summed it up best with her suggestions. I have a urologist willing to test me for this with the cystoscophy but as VM stated I fear he is a 'one treatment fits all' kind of guy so I am getting the diagnosis from him but pushing for both a new GP and another urologist. I also have IBS so its a bit of a double whammy with pain, diet modification etc. Hang in there..lets both get our diagnosis' and meet back here with the results!! :)
Karen