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  • I am re-introducing myself

    So hi there! I was posting semi-frequently a few months ago, but then my bladder got better and I found a new job that has made me very busy. Additionally, I fainted due to another medical condition I have, and broke my jaw and 6 teeth, as well as getting 6 stitches in my face. Recovery has been a process.

    I will do my best to shorten the long biography of my evil bladder.

    I started having urinary frequency in November 2009. Between that time and September 2010, the frequency hit a fever pitch...urinating every 3-4 minutes at times, up to 65 times a day. IC was never diagnosed because after 3 cystoscopies and hydrodistentions, I don't have glomerations (sp?) on my bladder. My symptoms did not respond to the IC Diet in any way - I did it faithfully for months! I also do not have pain...frequency/urgency is my only symptom.

    ...And what a symptom it is!! My bladder does its worst at night, and I am lucky to sleep 2 hours at a time without getting up to pee. Tonight, I've been sitting on the toilet for almost 2.5 hours, being just miserable.

    My thyroid was all wonky and in March they finally figured out that I have Hashimoto's Disease. I started taking thyroid supplements and bam! My bladder started improving dramatically. I had so much hope that it was THE cure for this nonsense. Then the medicine stopped working, and my bladder resumed its old shenanigans.

    I take Pyridium - a LOT of Pyridium. I'm afraid of the damage it's doing to my liver. But if my urine isn't dark red with Pyridium, that's when the frequency begins again. I need to keep a constant stream of Pyridium going through my system in order to lead a semi-normal life during the day - it makes me so sick though. Vomiting that orange nastiness back up is NO FUN, let me tell you.

    I just started on Desmopressin a week ago, so the jury is out on that one. It is supposed to make your kidneys stop producing urine so you can get a decent night's sleep. The last two nights have been much better than usual (hooray for sleep!), but tonight has been just awful. That's the worst part...not having any idea what is causing the problem. I don't know what I'm doing wrong that is causing this. (Read my signature below for the other treatments I've tried!)

    I'm strongly thinking about getting some Foley catheters to do at night so I can get some rest. I had nightmare urologists in the past, so I need to get connected with one who specializes in "difficult cases" (which I am often told. My old uro said I'm the worst case of frequency she's ever seen in 25 years).

    I used to have a very supportive man in my life who would care for me and not make me feel ashamed of my problem, but that relationship went ka-put. Now I am terrified to start dating again because I don't know how someone would react to all of this. He'd have to be a very heavy sleeper for nights like this, when I'm in the bathroom every 4 minutes. It makes me think it's just easier to be alone.

    I'm afraid. I don't want to be the girl who can't sit through a 90 minute movie at age 26. I don't want to have to always carry a med bag everywhere I go, take a medicine that makes me so sick, lose entire nights of sleep because I am peeing every 5 minutes. I don't want to have to go on SSDI or give up my freedom, even metaphorically. I want to be strong and healthy and bright, not the way that I've become now. I don't know how this happened.

    So that's where I'm at right now...nice to re-meet you all again. It's so fantastic to have a place to talk with people who can really relate, minus the shame and stigma of the condition. I really hope I fit in here.

    Anyway...so believe it or not, that's the short version of the story.
    Last edited by ICNDonna; 07-10-2011, 02:27 AM.
    28 y/o female

    [SIZE="2"]
    Bladder Symptoms:
    Severe urinary urgency/frequency with no bladder pain; severe urethral spasms (3x 'normal' pressure). Symptoms began in 2009.

    Failed medications:
    Ditropan XL (severe retention); Hyoscyamine (made bladder spasms worse); Marshmallow Root; D-mannose; Pristiq; Cymbalta; Lyrica; Nortryptaline; Prelief; Enablex; Baclofen; Ativan; Myrbetriq, Valium Vaginal Suppositories; Amitryptaline; Hydroxyzine

    Failed treatments:
    IC Diet (diet does not trigger or improve symptoms); Hydrodistentions (x2); Bladder instillations (made frequency worse); Heating pad (makes frequency worse); Surgical removal of adhesions on bladder

  • #2
    I'm sorry you're having such problems right now. I noticed that you list the IC diet as a "failed treatment" --- it could be that there are some foods/drinks that are usually okay for IC patients are an irritant for you. I mention that because even though garlic is almost always okay for ICers, for ME it is a problem. It took me a long time to learn that one.

    I suggest you give the diet a try again and stick with it 100% for at least three months before giving up on it. It could also be that the water supply in your area is an irritant. Have you tried drinking only bottled spring water?

    I hope you feel better soon.

    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
      Thank you for your reply! I did the bladder diet for about 5.5 months, to no avail. During that time I was REALLY stringent about the diet (maybe even a little to the point of being too careful since I ended up with some vitamin deficiencies) and it didn't improve my symptoms even a little bit...adding back in the "problem" foods didn't make things any worse either. I live in Phoenix AZ and the water here is terrible...no one can drink out of the tap without gagging! :P So all I drink is bottled water anyway.
      28 y/o female

      [SIZE="2"]
      Bladder Symptoms:
      Severe urinary urgency/frequency with no bladder pain; severe urethral spasms (3x 'normal' pressure). Symptoms began in 2009.

      Failed medications:
      Ditropan XL (severe retention); Hyoscyamine (made bladder spasms worse); Marshmallow Root; D-mannose; Pristiq; Cymbalta; Lyrica; Nortryptaline; Prelief; Enablex; Baclofen; Ativan; Myrbetriq, Valium Vaginal Suppositories; Amitryptaline; Hydroxyzine

      Failed treatments:
      IC Diet (diet does not trigger or improve symptoms); Hydrodistentions (x2); Bladder instillations (made frequency worse); Heating pad (makes frequency worse); Surgical removal of adhesions on bladder

      Comment


      • #4
        You'll want to be sure the bottled water doesn't have additives --- some of those can be irritating.

        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

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