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So I'm NOT a freak of nature?

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  • So I'm NOT a freak of nature?

    I was diagnosed with IC last week after a cystoscopy, but let me give my background. I apologize for the length.

    For as long as I can remember, I have had painful urination. I'm not talking about getting UTIs as a teenager or the occasional burning. I can remember being maybe seven-years-old and having tears rolling down my cheeks because it hurt to pee. Sometimes it was mild pain, sometimes not even really existent. Other times it was horrible.

    But I thought it was normal. Because it almost (if not) always hurt, I thought that was what peeing was supposed to be like. So I never said anything to my mother, and I never thought anything of it.

    In 2008, I had a kidney stone that eventually got stuck. I had a stent put in, and when my mother asked me to describe the post-operative pain, I said, "Well, you know how it hurts when you pee?" When she looked at me like I was crazy, I realized that wait a minute, this ISN'T normal?

    I didn't do anything about it from there, though. I'd dealt with it forever, and it obviously wasn't something serious like cancer, because otherwise it would have caused an issue by now, right? Eventually I discussed it with a urologist, who gave me some prescription for a bladder control medication (I can't remember what it was), which did not help. He eventually told me that we could do a cystoscopy, but he didn't expect to find anything, so we agreed that I'd just deal with it.

    I am now a veterinary student. I go to class from 8AM to around 3-4PM. I try to drink 2-3L of water a day to prevent kidney stones, but I can't. Because if I do, I have to pee. And if I pee, it hurts. I realized that I will sit in class for 6-8 hours and never go to the bathroom, even if my bladder is full. And when I finally do go, it hurts like hell, it's difficult to initiate and maintain urination, and I often feel like my bladder isn't empty or like I have a UTI (burning, the feeling of still having to go). So I had the cystoscopy done and was diagnosed with IC.

    On the one hand, I am so glad to be diagnosed, because I have an answer, finally. On the other, I stupidly almost sort of feel like I don't... I don't know, deserve? the diagnosis, because I see what all of you go through, and it's not that bad. I do not have frequency or urgency issues (I rarely wake up in the night to pee). I don't have pain with sex. I don't have pelvic pain apart from my bladder/urethra before/during/after urination (aside from the fact that I also have endometriosis). I just have painful urination. And even though on the survey I did, I scored high for pain and discomfort to the extent that my doctor raised his eyebrows, I can deal. I've dealt with this for at least 16 years, so I've just sort of learned to, for the most part, ignore it. I guess I sort of still feel like a freak for NOT having it that bad.

    With that being said, I started Elmiron and antihistamine treatment yesterday. The Elmiron isn't so bad, though it made me nauseous this morning. I'm going to hold off on taking the antihistamine tonight and call my doctor tomorrow, because I could not stay awake during class and ended up taking a five hour nap this afternoon.

    Anyway, that's my story. I just wanted to put it out there to people who could at least partially relate. Thanks for listening!

  • #2
    to the IC Network. Some people find that it's the capsule containing the elmiron that's the problem --- and if the capsule is emptied into water (discard the empty capsule) they can take it with no problem. It might be worth trying that way.

    Have you found the IC diet information? You'll find a link to the latest food list in my signature below. Some of us find the diet to be the thing that helps most.

    Warm hugs,
    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

    Comment


    • #3
      You're not alone!!

      So sorry to hear that you have been having problems since a very young age. You must be pretty tough. I cant stand pain specially pelvic pain (bladder pain)
      it hurts soo bad. I find myself feeling sad and depressed when i get a flare up.
      Which usually happens when i go off my diet then it usually lasts about a week
      or two. Hopefully you can get your IC undercontrol. I am hereif you want to just vent. I wish i knew about this site 3 years ago. The doctors would just say that
      i was clinically depressed and it was all because of myu bladder pain which
      the doctors at first couldn't figure out what was wrong with me. It will get better
      now that you know. You will figure out what your body rejects.


      Originally posted by nitheninny View Post
      I was diagnosed with IC last week after a cystoscopy, but let me give my background. I apologize for the length.

      For as long as I can remember, I have had painful urination. I'm not talking about getting UTIs as a teenager or the occasional burning. I can remember being maybe seven-years-old and having tears rolling down my cheeks because it hurt to pee. Sometimes it was mild pain, sometimes not even really existent. Other times it was horrible.

      But I thought it was normal. Because it almost (if not) always hurt, I thought that was what peeing was supposed to be like. So I never said anything to my mother, and I never thought anything of it.

      In 2008, I had a kidney stone that eventually got stuck. I had a stent put in, and when my mother asked me to describe the post-operative pain, I said, "Well, you know how it hurts when you pee?" When she looked at me like I was crazy, I realized that wait a minute, this ISN'T normal?

      I didn't do anything about it from there, though. I'd dealt with it forever, and it obviously wasn't something serious like cancer, because otherwise it would have caused an issue by now, right? Eventually I discussed it with a urologist, who gave me some prescription for a bladder control medication (I can't remember what it was), which did not help. He eventually told me that we could do a cystoscopy, but he didn't expect to find anything, so we agreed that I'd just deal with it.

      I am now a veterinary student. I go to class from 8AM to around 3-4PM. I try to drink 2-3L of water a day to prevent kidney stones, but I can't. Because if I do, I have to pee. And if I pee, it hurts. I realized that I will sit in class for 6-8 hours and never go to the bathroom, even if my bladder is full. And when I finally do go, it hurts like hell, it's difficult to initiate and maintain urination, and I often feel like my bladder isn't empty or like I have a UTI (burning, the feeling of still having to go). So I had the cystoscopy done and was diagnosed with IC.

      On the one hand, I am so glad to be diagnosed, because I have an answer, finally. On the other, I stupidly almost sort of feel like I don't... I don't know, deserve? the diagnosis, because I see what all of you go through, and it's not that bad. I do not have frequency or urgency issues (I rarely wake up in the night to pee). I don't have pain with sex. I don't have pelvic pain apart from my bladder/urethra before/during/after urination (aside from the fact that I also have endometriosis). I just have painful urination. And even though on the survey I did, I scored high for pain and discomfort to the extent that my doctor raised his eyebrows, I can deal. I've dealt with this for at least 16 years, so I've just sort of learned to, for the most part, ignore it. I guess I sort of still feel like a freak for NOT having it that bad.

      With that being said, I started Elmiron and antihistamine treatment yesterday. The Elmiron isn't so bad, though it made me nauseous this morning. I'm going to hold off on taking the antihistamine tonight and call my doctor tomorrow, because I could not stay awake during class and ended up taking a five hour nap this afternoon.

      Anyway, that's my story. I just wanted to put it out there to people who could at least partially relate. Thanks for listening!

      Comment

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