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how do you tell people?

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  • Megs
    replied
    Hey Liana,
    I'm sorry you are going thru this right before graduation....my problem started the day of, so hopefully you can get a handle on yours for the big day. I just wanted to tell you to be persistant with those doctors. it took me 10 to start getting answers and for doctors to take things seriously. i also wanted to suggest a gyno specialist and a physical therapist in addition to a urologist. the ones i have seen have been wonderful, and both experience the same pain i do, so that makes them much more understanding too. the most important thing for you is to get the care you think you deserve, and don't stop looking until you do. good luck! meg

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  • Liana
    replied
    Thank you to everyone who has been writing with advice. I made a doctor's appointment for next week to do some more tests. So far I have been STD tested (negative), had a urinalysis (all okay), cultured (okay again) and the health center just treated me for a bladder infection even though they didn't think I had one. I let it go for awhile, but its not going away, so... back to the drawing board. It comes and goes, and it is easy to forget about it when I have good days. But the bad days freak me out. Plus, I am graduating in a month and I sit up at night worrying if I will have a bad day on the day of graduation! Can you imagine?! I don't want to reserve a cap and gown, have family come into town and then end up looking like a fool. frown

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  • liz2
    replied
    Most people just "don't get it" no matter how well they know us. I don't give up trying to explain; the more we mention IC, though, the more extensive its publicity is--even if people don't understand what we are going through.

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  • hazegirl
    replied
    Well for some it may be easier not to tell anyone. But for me, I tell those that I'm around alot that way they don't think I'm a freak or anything. Those that I work with understand my condition...well they at least know about it. Luckily its all women, so we talk about all sorts of stuff. My friends are pretty understanding and if someone makes a comment, they stick up for me and just make something up. I don't tell complete strangers...but its nice to have some people that know whats going on.
    -Kelby

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  • Christa
    replied
    Hi-
    To tell u the truth, I just don't tell anyone anymore. Why? 'Cause in my experience they just don't care. And if I hear one more person tell me it's in my head or compare it to their hayfever, I may hurt someone. I make plans with my friends and acqaintances and bail out even in the middle if I have to. I try to take advantage of every good day. Keep getting out there when u can. Wish u luck.
    Chris

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  • scopda
    replied
    Liana,
    Hi I am a Junior in college and I was diagnosed the summer before my sophmore year. I really understand the embarressment and discomfort in discussing your "needs" with people. YOu need to know that what is happening to you happens to many people and you are not alone. Do you have cystitis (an infection of some sort) or interstitial cystitis or an overactive bladder? YOu should go see a doctor. A nurse/doctor in a college health center can easily give you a test to see if what you have is an infection or not and take it from there. If it is just overactive bladder- there are great medicines that can help a lot. Go talk to a Nurse or doctor. In the meantime tell the peopel your with that you need to use the bathroom a lot and youre trying to figure out why. On a college campus many women are familiar enough with Urinary Tract Infections (for example) to understand that sometime you just need to go to the bathroom a lot. Or hold off on travel for a little while till you figure out what's going- for all you know driving may be exacerbating the urgent feeling? MOST IMPORTANT: don't ignore what's going on- your body is sending you a message. listen up

    Debbi

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  • scopda
    replied
    Liana,

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  • ICNDonna
    replied
    You didn't mention whether you have had tests to confirm infection --- if you have infection it can be treated. Have you seen a urologist to check to see if what you have is overactive bladder? If not, you definitely should be.

    I hope you feel better very soon. I know what you are experiencing can be very frustrating.

    Warm healing thoughts,
    Donna

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  • Liana
    started a topic how do you tell people?

    how do you tell people?

    I have periods of cystitis where all of a sudden I have to urinate every 15 minutes, and thats holding it as long as I possibly can. Luckily I don't experience any pain, just frequency, urgency and pressure. It is so embarrassing and frustrating on road trips, or when I have plans to hang out with friends. I don't know how to tell people who I am not entirely comfortable with. Maybe its easier to just lie to get out of plans. This is stopping me from traveling and wanting to make plans because I never know when it will happen. I find myself always scoping out where the nearest bathroom is, even when I'm not urinating frequently. Anyway, I'm just starting to accept that this isn't just nerves, or all in my head. Just felt like getting this all written down and off my chest.
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