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To all 20 something people with IC

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  • To all 20 something people with IC

    Did any of you talk to your doctor about a handicap sticker for your car? I have severe IC but I'm only 23 so I feel guilty and out of sorts asking my doctor about a handicap card. I also feel uncomfortable about using my bathroom passes. When I'm in a mall and can't find a bathroom I am in extreme pain however I am very young and I am afraid of what others will think if I use them. Does anyone else have these issues? Also caths really bother my urethra and I am prone to UTI's so every time I get cath'd I get an infection. My doctor really wants me to do rescue instills but I am terrified of getting a UTI on top of IC. Does anyone else have thaws issues?

    Take: elmiron 2twice a day
    Cymbalta once a day
    Prosed ds as needed
    Lydocaine gel for sex
    Tramadol as needed
    Oxycodone as needed

    Diagnosed with severe IC April 2011

    Suffered for 8 years without a diagnoses
    I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.

  • #2
    I know a girl in her 20's and has one leg, she gets around very well and you would never guess she has a prosthetic. People have made comments to her about using the handicapped parking stalls, but it is hard on her to walk too far.

    One day some stopped and scolded her for using the handicapped stall and she for effect stabbed herself in the leg., this shut the person up quickly.

    It is nobody Else's business but people do make it their business, you just have to ignore them and do what is best for you.

    My are with you all. May you all find a way to peace and joy in your lives.


    • #3
      I am 27 and am thinking about getting one. I would only use it for emergencies but I am afriad like you that people would be jerks to me. I also have SA but if I had a choice between peeing my pants or making others happy those peopleould just watch me as I ran to the bathroom.


      • #4
        I am less worried about being judged than I am worried, as a student, about being accused of "faking it".

        I think in the context of students being under surveillance constantly for academic honesty and the constant suspicion by teachers and staff around medical documentation, I am very self-conscious about the very bad timing of my IC flares.

        Ironically because they are sudden, sometimes unpredictable, and also associated with stress, I can end up having a flare as I do now just as I close in on an assignment deadline. Which, from an outsider's perspective, can look like a last minute excuse to get false accommodations.


        • #5
          I totally understand how you feel on all these issues! I'm 27, and I'm often hesitant to stand up for my self or beg to use non-public bathrooms at stores where I am a customer. Just the other night I bought ice cream at a candy shop, then asked to use the restroom (I'd even used it before) and the salesgirl said "no we dont offer a public restroom." I just wasn't in the mood to start saying "I'm sorry to ask you this, but could you please make an exception? I have a bladder condition that is very painful yadda yadda yadda" It looks so simple in writing, but I just couldn't bring myself to start telling this sour-faced salesgirl the details of my disease and to beg her to let me pee! And if she said "no" after I begged her, I know I would be furious. My mom ended up buying soup at the restaurant next door so I could use their bathroom.

          About the handicap parking- you have to ask yourself about the difference it would make in your ability to succeed in school. Would having a handicapped placard significantly increase your ability to make it through school as you are dealing with this difficult and painful condition? If so, you owe it to yourself to ask for one. If you just need it for school, you can actually get a pass through your school's "office for students with disabilities." Then you can park on campus handicapped spots but you won't have a big blue placard that people would notice. I had a debilitating back injury for a year that was so bad I was close to dropping out of grad school. My therapist convinced me I owed it to myself to apply for a handicapped pass, even though I had the exact same reservations you do. I felt like people seeing me would think I looked young, healthy and normal. But i got the pass, just for campus, and it literally saved me that year.

          About the instillations- I don't think they work for me either because of how irritated my urethra and pelvic floor muscles get each time. I've had six this year. The second two uracyst instills actually weren't too bad, but the two elmiron ones caused pain and the self-instill I did was horrible! :-( I'm looking at other options. You should probably try at least one though just to make sure it's not just what you need! Good luck! :-)
          IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
          Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
          Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

          Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
          Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
          Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
          Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH


          • #6
            I've thought about getting a handicap pass too. I try to avoid long classes because of the same thing. But it's one of those things, forget what other people say! You have the support of tons of people going through the same thing on this site!
            Also another thing I've started doing, telling all my teachers the first day of class what is going on, what IC is, and what it means for me. I also do a lot of speeches about it so kids will understand! I hope you get it figured out!
            "Blindfolded fear does not lead to an awakening. Questioning with boldness does":woohoo:

            Diagnosed: Autoimmune Progesterone, P.F.D., Vulvodynia, IC.