View Full Version : Diagnosing IC
06-25-2004, 01:10 PM
I am not sure if this is the right place for this question but here it goes...How many of you have been diagnosed with IC with only having symptoms for a short period of time? I know that the experts say that you need to have symptoms for at least a year but I wonder if that is always true. I started having symptoms in the fall and was diagnosed by a local uro Jan 2004 through a cystoscopy with hydro... After I was diagnosed to any "Ic expert" who although feels that I most likely have IC thinks that most of my pain is coming from PFD. The IC Expert is about an hour and 1/2 away so I decided to see a urogyno that just joined my uro's practice (local one). I saw him today and he is not convinced that I have IC because I have not had symptoms long enough. He did a pelvic exam and pressed on my bladder which really did not bother me. He wants me to come back in two weeks to maybe do some more testing to rule out some other things before deciding if he thinks I truly have IC. In the meantime he is going to go over my cystoscopy/biopsy report and get my records from the IC Expert. Needless to say I am completly confused by all of this. I just thought maybe someone may have some input for me!
06-26-2004, 11:23 AM
IF you had an IC expert do a hydrodenstention and cystoscopy on you, in a hospital under asedation, and, you had pin point bleeding (look at my bladder pic, click on the link) you most likely have IC, I also have IC and pfd.. and one triggers the other during a flair so it is utterly impossible to tell the difference except when it first starts..... you don't have to have symptoms for over a year to get a dx... that like saying you don't have a throat infection till you no longer can swallow.. poleeeze!! lol... I would take a ride one day.. or better yet call the uro ask if he took a picture and send you a copy and for the written report on his findings... let me know
06-26-2004, 12:14 PM
I agree, just ask to look at your pictures that were taken during your hydro. That will tell the tale, but then some people don't have extensive scaring and it doesn't show up as well. As for having to wait a year before making a diagnosis? Oh please, how stupid can that be? I would think that having symptoms of a UTI without any bacteria showing up would be a big clue. I have had IC for over 10 years and they only just nailed down the diagnosis on me in the last 4 months, after seeing every kind of doctor, uro internist, gyns and anyone else who seemed to want to stare at my private parts. It really gets to be so old.
I hope they find something that works for you really quickly so you don't have to go through with what a lot of us have had to deal with and don't EVER let any of these doctors tell you that it is in your head OR that your pain level isn't HIGH enough. Some people have high tolerance to pain and the pain they feel may be off the charts for someone else. Especially if you are diabetic, because our nerve endings are kind of on the numb side of thing and we can tolerate a whole lot without really knowing it.
I'm not sure why you don't feel pain when they press on your bladder. Consider yourself lucky on that account. If anyone even puts a finger tip on mine I want to whop them:bonk:
Let us know what the doctors do to treat you. We always like to hear other people's stories because we can learn a great deal from them and also, we just care about you, sweetie.:kiss:
Take care and feel well.
06-26-2004, 12:25 PM
I think that's crazy! I agree with everyone if they took pictures have him look at them. Dr. Moldwin thinks you have it right? In his book he does say that most patients with IC also have PFD. I'd ask him again and tell him what the uro\gyno said. Let me know what's up this Monday. I know you must feel very confused I would too. I hope you 're having a good weekend otherwise. I feel better too. Thanks for all your encouragement. I hope I can be of some help to you too! Call me Monday and we'll talk. Take care of yourself. I would just talk to your other doctors and maybe have them compare notes. I hope you get this issue resolved quickly. Have you seen Along Came Polly yet? I know you told me to watch it and I did it was hilarious! You should watch it too. Laughter is good for the soul! Thanks for the good advice you gave me and I hope you have a good laugh too. - Chris :kiss:
I only had symptoms for 6 months prior to diagnosis. Here I am 3 years later, feeling great most of the time, but still flaring occasionally. I just sprained my foot and the stress of that combined with high doses of an anti-inflammatory sent me into a mini-flare. I am positive I have IC ----- and my symptoms were very mild in addition to not having been present for long.
That's kind of old thinking to believe you have to have symptoms for a long time. I am sure the urogyn just means well and wants to make sure.
06-26-2004, 12:54 PM
I agree!! since the Expert said you have IC then i would stick with what he said.
When other doctor don't know about IC they try to blame it on other things. I know some Uros that thinks that IC is just in peoples heads. Which is a sad fact!!
I would try to stay with the expert
sending you hugs and prayers
06-26-2004, 03:18 PM
If you were diagnosed by hydrodistention and biopsies, you almost certainly have IC. When your current doctor gets the reports, I'm sure they will be the convincing factor.
I had IC for about a year before diagnosis, but I was diagnosed within six months of the time I first saw a urologist. My gyn kept treating me for infections and I referred myself to a uro.
Sending warm healing thoughts,
06-26-2004, 03:54 PM
I think that doc is failing to notice that IC treatment is IMPROVING!!! Finally people are not having to see 5-10 doctors over 3-5 years to get diagnosed. It is just being recognized sooner....AMEN!!! :pray:
I was sent to a URO after 2 months of bladder trouble and positive cultures that became negative while the symptoms actually worsened. MY URO started treating me with the typical IC first course of meds after my first appointment with him and then we did the Hydrodistension after 5 months and I was diagnosed.
I agree with the others...you have IC. Sheesh, most of us have PFD BECAUSE of the IC.
I am sorry Jaime for your struggle. You are lucky to be diagnosed quicker than most and some idiot wants to argue the issue. Like you WANT to have IC...Good Grief!!! We are not talking about whether you won the lottery or something....
What a fruit-cake! If you were diagnosed through cysto-hydro, how can he refute it?
06-30-2004, 02:22 PM
Thanks for all of your input...I have been staying away from the boards and the internet for a couple of days just to clear my head. I am confident in both of my doctors assesment of my condition (especially Dr. Moldwins) and I should not been so concerned about what this doctor thinks. Maybe when he takes a look at all my records he wil come to the same conclusion. The bottom line is - someting is causing this pain!!!!!!!!!!!!! LOL
Thanks for all of your support...I go back to the urogyno on 7/9 so I will let you know what he says!!!
06-30-2004, 04:19 PM
I'm sorry you've been feeling so bad. I hope you find something out at your next app. You know you can always call me anytime. I hope you'll be feeling better soon. Take care of yourself, put your feet up (when you can), take a hot bath, pamper yourself! And get lots and lots of rest. Let me know how your app goes? I have my app July 6th. Hopefully it will go well. I hope you have some relief soon. I'll tlk to you soon - Chris :kiss: :grouphug:
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