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  • #1

    Chicago-area questions

    Today is my first day on the network, and I'm very happy to connect with others. I was diagnosed about a year ago after a bladder distention procedure. When that didn't relieve my pain, my urologist wanted to put me on Elmiron, which I declined. Unfortunately, the symptoms have increased with time to the point where I can barely stand the pain.

    I have two questions for anyone who would care to answer: I would like to use a female urologist (Chicago or north shore) -- any recommendations? Also, what are some of your experiences with Elmiron? I was worried about the 3xday dosage, since I'm not a big fan of medicating myself, but now I'm at my wits' end.

    Thanks in advance for your help!
    Tags: None
  • #2
    Just a comment. I live in Chicago and a local MD/Chinese Medicine acupuncturist helped me tremendously with pain issues.

    He is located in downtown Chicago on Michigan Ave.

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    • #3
      Hi, I'm in the chicago northwest suburbs though I see a urogynecologist at highland park and he has an office in evanston. You mentioned you wanted a woman but I just wanted to say I do like him alot. He is a reasonable doctor, listens to you - so good bedside manner, not pushy on tests, doesn't think cysto/hydro is really necessary just did an in-office cysto. Prefers instillations though I asked for elmiron and he has put me on that and gelnique. If you don't find a woman, let me know and I'll give you his info.

      I've been on elmiron for 6 weeks. He starts you off with 2x/day dosing as he finds it is just as helpful as 3x/day dosing. I do think it is helping me already. Everyone has different effects or none at all but the most common side effect really is stomach upset. Some people take it out of the capsule with water which helps. I take it with omeprazole or pepcid which gets rid of the effects too.
      It did give me a headache for a couple of weeks but that passed.
      It makes me feel kinda hypoglycemic on my morning dose so I make sure to eat protein and not wait more then the hour they recommend. Its not as bad as when I started, but still there.
      I should say I am very sensitive to meds so often experience the more rare side effects.
      Alot of people worry about hair loss and it is only 1-4%, not high. If you do have it, I have read it will be within the first month, patch, not all over and if you lesson the dose or discontinue it will grow back. Because he has me only start on 2/day I have noticed zero hair loss personally.

      Welcome to the board!
      Cindi


      Gelnique for frequency/urgency - works great
      Macrobid after sex
      Prilosec, continuous birth control pills
      synthroid .088mg, mucinex-d, restasis

      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

      IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
      AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
      AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
      Great treatment flowchart on page 19 of the pdf

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      • #4
        There are more meds used to treat IC than just elmiron. When I first got diagnosed I thought elmiron was my only treatment options. Under the patient tab there is an explanation of treatments available and if you havent read it you should. It has a lot of good information on there.

        Have you tried the IC diet? Eliminating bad foods helped me so much. I did take elmiron but it didn't help much and I don't like taking meds 3x a day either. My new uro suggested cystoprotek which is OTC and it works much better. Also much cheaper for me. You can buy that on this site.
        Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

        Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

        Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

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        • #5
          Re: Chicago-area questions

          Hi guys, I live in Chicago too.. I am 33 years old and I just got dignosed.. Do u guys have any suggestion for me... About meds, alternative treatment physical therapy .. What had helped u guys

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          • #6
            Re: Chicago-area questions

            Originally posted by kjh View Post
            Today is my first day on the network, and I'm very happy to connect with others. I was diagnosed about a year ago after a bladder distention procedure. When that didn't relieve my pain, my urologist wanted to put me on Elmiron, which I declined. Unfortunately, the symptoms have increased with time to the point where I can barely stand the pain.

            I have two questions for anyone who would care to answer: I would like to use a female urologist (Chicago or north shore) -- any recommendations? Also, what are some of your experiences with Elmiron? I was worried about the 3xday dosage, since I'm not a big fan of medicating myself, but now I'm at my wits' end.

            Thanks in advance for your help!
            I had a headache side effect from elmiron but wanted to share because when the side effect happened and with my doctor's instruction, I stopped the elmiron, the headache disappeared within 24 hours and did not return. I have also seen notes from others who had their side effects disappear quickly.

            I also suggest to anyone who is concerned about hair loss do what I call a brush test before starting it. What you do is take a hair-free brush and brush your hair thoroughly, then comb the hair from the brush and store it in a labeled plastic sandwich bag. Then if you feel you might be losing hair, you can repeat the brush test. We all lose some hair every day and if we're actually worried about hair loss, it can seem like a lot. The brush test can help us be more accurate about this.

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.             [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

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