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My Story

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  • My Story

    I'm new to this board and so glad I found ya'll. I'm 31yrs old and have been suffering urinary pain since my early teens. I was diagnosed with IC in 1989 with cysto/hydro. I had classic Hunner's ulcer and pinpoint bleeding. My Dr put me on Elavil,Atarax,etc. After a couple of more cystos over a 4 yr period I was doing alright for the most. Then about 5 yrs ago I started having my IC symptoms return with a vengence and terrible gyno problems. I have had 3 laps and have endo almost everywhere. Alot of endo on my bladder and ureters. My gyno and urologist went back and forth as to what was causing my pain, endo or IC. In May of this year I had another lap to excise the endo to see if I could get some relief. I did not. My urologist was not very up to date on IC and basically dismissed my diagnosis 10 yrs earlier. I now have a new urologist and had a cysto/hydro/biopsy/DMSO on wed 11/15. I am taking Elmiron,Urimar-T,Zantac,and Wellbutrin SR. I haven't had my follow up appt yet, but my Dr said we will probally put me on Neurontin also. She has had some patients have success with that. I had alot of scarring and pinpoint bleeding and she did 2 biopsies of suspicious areas. I am taking Lorcet 10/650 right now for pain. It only eases it a little. My new Dr informed me that she is not "big on pain meds". I'm a point that I don't know what to do. I haven't worked in 5mos and am in constant pain with the IC and the Endo. We've had recent problems with Drs writing bogus pain med rx's and most Drs here are afraid to prescribe any sufficient long acting pain meds. I feel like I'm at the end of my rope. Pain controls my life and I hate it. I have my follow up appt 12/02 and hope to find some help then. Any advice would be greatly appreciated. It is so good to find people who understand. Thank you so much. Amy

  • #2
    Trust me honey~you are VERY far from the end of your rope! Do keep your appt with your uro. Do try the Neurontin but do it 1/2 as fast as he/she wants you to. It a very hard drug to get into your system and myself, my husband and alot of the other girls here have found that the slower you go, the less likely you are to give up. You honestly don't know how much the drug is helping you until you quit taking it so please give it a try.

    Now, for the more serious stuff. When you see your uro, flat out ask him/her exactly what they will or won't do to treat your pain, meds with MAXS especially. If you have found one who is more afraid of the DEA than helping a chronic pain patient then ask her if she can refer someone willing to, if not, ask about a pain clinic. I wasted 6 very very very long years with terrific uros. All afraid of the fact, one of them who refuses pain meds is building a new complex 1/2 a city block in size, but he doesn't have the guts to treat the pain that he knows his patients are engulfed in. Does that make me bitter, darn right....does it down right **** me off, damn right [img]mad.gif[/img]

    WE are responsible for getting our own treating dr and unfortunately it's up to us to do most of the foot work BUT, you can save time. When you call and new uro, or a pain clinic, ask directly how they treat pain. If they himmey-haw around loose their #.

    Wishing you the very very best of lucky
    and PLEASE keep us posted.
    tons of gentle hugs!
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


    • #3
      First I'd like to welcome you to the IC Network. I know you'll find a lot of information and support here.

      I hope you'll feel better soon. You just had surgery so it may take a bit for you to recover. Then, if you still need pain meds your uro does not feel comfortable ordering --- ask for referral to a pain specialist. For now, let's hope you don't need the referral after you have a little time to recover.

      Sending warm healing thoughts,
      Stay safe

      Elmiron Eye Disease Information Center -
      Elmiron Eye Disease Fact Sheet (Downloadable) -

      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.

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      Diet list:

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      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.

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


      • #4
        Hi Amy and Welcome!
        If you are having difficulty finding a good Uro, I recommend you take a look under the ICN Patient Handbook for a list of doctors in your state. Fear is never an excuse to not treat your condition appropriately. This disease is serious and requires serious treatment. If your docs are scared, then I'd be afraid of them. But most likely, they are more concerned with their own butts than your bladder.

        Start looking for another more experienced and IC friendly Uro. It will certainly save you a lot of grief!

        Good Luck and keep us posted <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" /> &gt;Tina
        What you are is God's gift to you...What you make of yourself is your gift to God.