IC doctor search

[annk]

:rolleyes: Hi.

I have been disagnosed with IC via hydrodistension a couple weeks ago. They put me on Elmiron. They said unfortunately their Urology staff wouldn't be of much help.. which is sort of sad, really. I guess mostly they concentrate on Prostate Cancer and such and no chronic pain patients.

How do you find a good specialist.. looked on the list but there is no one close to me. I have this one very specific spot on my bladder on my LLQ that hurts. I also have endo, vulvodynia and IBS. I feel terrible about my self most of the time because I have so many illnesses.

I'm taking a combo of Celebrex and Flexaril (muscle relaxant). I also take Zoloft. Sometimes if it gets bad enough I take a Vicodin but I've been on the stuff for long periods of time in the past and I'm so sluggish I can't function and it's murder to come off them.

I know it's not curable.. but I keep somehow hoping there might be a surgical treatment. My intuition tells me I have a more ulcerated spot on my left side.. maybe they could laser? Who knows...

Feeling a bit down... why can't I find a dr that can help me? It's taken over 11 yrs to get the diagnosis.

AnnK

[Janie Miranda]

Annk,
So sorry to hear you are having such a hard time with it. I hope the elmiron begins to help you as soon as possible. If you have already checked out the list from this site you might want to go to the interstitial cystitis associations site at:
http://www.ichelp.org/
If you email them they will send you a list of IC specialists in your state. I found my doctor off of that list and then "met" some others on this list who used the doctor and said they highly recommended her. I've been happy with the doctor. I hope you find someone in your state closeby who can help you out soon.

[~*~Christine~*~]

Hi Annk
I guess the best way for looking for a urologist, who isn't on the ICN, is to call the urologists that are close to you and ask them if they know a lot about IC
Did you get a cystoscopy done with your hydrodistention? If so, they would have already checked to see if you have ulcers.

[JaniceB]

Hi Annk
Sorry to hear of your pain. It is interesting what was told to you about uro's, I've had basically the same thing. . in fact I just asked my family dr this week why the uro I went to just sent me home with no meds at all (IC or otherwise) she said alot of them don't like to deal with IC because it is a very time consuming disease!

What I did, was go to a University Hospital. By clicking around on their website I discovered they currently have an IC study going on, so I am now in that and am feeling better on the medication they have me on. My family dr is going to work with them on getting me on the right IC and/or pain meds. It is an hour's drive but worth it.

So I don't know if I've been much help other than to tell you I know what you mean! and if you have a university hospital anywhere near you, that might be the place to inquire.

Janice

[rinnie]

I agree with janie miranda. Go to the IC Assoc. website. I took the short IC test they ask you to take and submit. The next day I had an e-mail from them giving me the names of numbers of 3 of the best IC uros in my area. I have to drive 3 hours to see my uro, but it is well worth it. He does research on IC and I feel very confident that I am getting the best treatment out there.


Lots of luck and keep looking. I saw 8 doctors before finding the right one.
rinnie

[annk]

Thanks all.. hey where on ic-help is the place to submit a request for physicians.. I looked thru the site map and couldn't find it...

Thanks
Annk

[Janie Miranda]

Check out this page to contact the folks at the ICA. I couldn't find the exact page where you can request a list by state but I'm sure if you email them they will get back with you with the info.
http://www.ichelp.com/AboutTheICA/HowToContactTheICA.html
Good luck

[pedzrn]

Hi all-I live in NJ and wonder if anyone has seen Dr. Margolis? If so can you e-mail me any comments you may have. Pedzrn@bigfoot.com. Or you can PM Me.
Thank you

[July]

I could not fine the physician list on the ICA website either. I emailed them. Thanks for the suggestion, Janie! Rinnie, where did you find the survey to fill out on the ICA website?