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  • Can't pinpoint pain or not

    Hello all, I'm new to the forum but by no means new to this awful disease. A little backstory. I'm a 23 year old female, and my symptoms arose back in my freshman year of college. It started out with annoying but not entirely unmanageable frequency... which soon devolved into voiding four times an hour during the day. This developed into persistent urgency, though as I recall I did not suffer any burning/pain/pressure beyond the usual "pressure" of a "full bladder". I did not (and still do not) suffer nocturia, which I consider a blessing for sure. Looking back now, I believe I also suffered some pelvic floor spasms; I would feel these fluttery twinges around my urethra accompanied by that telltale "sting" of urgency.

    Over the past four years, I have suffered the occasional flare up which constitutes increased urgency and frequency, but I can't tell if I'm also suffering from pain that could be linked to PFD. At the moment, I'm suffering a godawful months long flare which constitutes asymmetric twinges and "stinging" shooting up my urethra and the muscles surrounding it. Pain during urination ranges from a sort of "hot" pain traveling up from my urethra to my bladder, and then persistent burning in my urethra after voiding. This alternates with my bladder feeling heavy or pressured and either burning hot or strangely ice cold. It is very tender and easily aggravated, and I find sitting aggravates it quite badly. Due to Covid putting me out of work, I've had a sedentary last few months which I believe might have triggered PF irritation. I found my symptoms would always get worse when I was on break in college and not walking 4 miles roundtrip to campus every day.

    This long winded spiel aside, I'm just wondering if any of you more seasoned sufferers think that my non urgency/frequency symptoms sound like your typical pain symptoms/PFD? I have difficulty registering/quantifying pain, so I'm trying to puzzle this out. I'm definitely going to make another appointment with my urologist (who didn't even explicitly diagnose me despite four years of obvious symptoms, though he did give me the "diet sheet" :eyeroll: ) and discuss second-line treatments. Hell, my goal at this point is to speed-run to sixth line, after 4 years of this hell I literally daydream about surgery lol...

    At the moment, I'm following the diet, on 10mg daily of Cetirizine (recced by my Dr.), D-mannose, and baking soda water. I actually had a really good last two weeks—back to my usual entirely manageable "remission" quality of life which I credit to being a lot more active participating in marches etc around my city, but the past two days something has just destroyed my progress and confidence completely, and I'm in a very dark place.

    Any input would be greatly appreciated!

  • #2
    First of all, I'd like to say to the IC Network. I know you'll find a wealth of support and information here.

    It's good that you'll be seeing your urologist. I suggest you ask for referral for an evaluation for PFD. In the meantime, you could keep a diary, noting everything that goes in your mouth, activities, urinary frequency, pain levels --- you may be able to identify some triggers.

    I hope you feel better soon.

    Donna
    Stay safe

    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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