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  • Help!!

    Hello,

    I am newly diagnosed with IC and needless to say it's been an emotional and intense few months. I have never experienced pain like that in my life and am constantly scared it will come back...not to mention I miss the drinks, the food, and the type of exercise I used to do. I am trying to take it day by day but I get really down about this because I feel I am so young (I'm 27). I just joined the network and am hoping to get guidance and some help and tidbits on living with IC. I am so grateful to read that there is such great support out there. I was wondering, if anyone in the Philadelphia/Southern NJ area could reccomend a Dr. to me? I have been going to a doctor who honestly doesn't listen to me, never gets back to me, and refuses to understand how much I need(ed) pain management when I was in two incredibly bad flares (two months apart). I feel so frustrated because she or the practice does not understand what this is like and how emotional it is as well. Lets just say in the last 6 months I've seen/spoken to my doctor twice and am always referred to the nurse practioner who is new and has no idea about IC. It's never good when I ask questions and she says, "I don't know..let me google it." My point is..if anyone out there has a reccomendation for a good doctor in my area please let me know. Actually if anyone on the west coast or in any major city wants to respond I am thinking about moving in the next few months and it would be nice to have a list of highly reccomended doctors. I so appreciate the help and any words of encouragement. Thanks for listening.

    -Whitney

  • #2
    MY WORD!!! Google it?? Surely she is joking!! Please tell me she is joking.

    About a Dr in your area. There might be some people to respond on that. You can also go to the homepage and look under the patient tab, there is a place to find Dr's in different areas. Also on the ICA website they have an extensive list of Dr's by state, you have to go to IChelp.org. I hope you can find a Dr to treat your pain or at least get a referral to a pain clinic. Would your PCP refer you to one? Also, you could see if your uro would refer you to physical therapy, that can be very helpful.


    http://www.ichelp.org/Page.aspx?pid=663 This is the link to request Dr list on the ICA website

    Sandra
    Link to the patient information, everything from What is IC? to Disability
    http://www.ic-network.com/patientlinks.html

    American Urological Association Clinical Guideline
    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

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    • #3
      Thank you Sandra. I know..can you believe it? It's been really frustrating feeling like I am not being heard. I will definitely check out the information you suggested. Thanks so much.

      -Whitney

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      • #4
        There are docs on the site here that are in that area. I'm sure there are many more, but they are out there. Go to the page with the listings on the home page, and take it from there. (Originally from Cape May NJ). Take care and good luck. And if you don't like one, move on! Jill, wife of Bob

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        • #5
          Hi Whitney,

          I'm 29.. so we're in the same age bracket.. I hope you don't feel alone.. IC affects people of all ages.

          Anyway, I'm from NJ but live in PA. For a Philadelphia doctor I liked Philip Hanno.. he's at UPENN

          In NJ, I like Juana Hutchinson-Colas.. she's at UMDNJ. I prefer Juana.. but Dr. Hanno is very good too.

          Both doctors take a variety of insurances - I hope this helps!

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