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Possible IC- Could use words of encouragement and advice!

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  • Possible IC- Could use words of encouragement and advice!

    I have recently turned 22 and for the most part have considered myself healthy- with the exception of some issues of anxiety and IBS. I have not been diagnosed yet with IC, but have been struggling with what I though were possible UTI's for the past 6 months- but besides the first time, everytime I have gone to get tested (about 1x a month), the tests have come back negative. My symptoms were not exactly like a UTI- it never burns when I use the bathroom, but I have a constant pressure that before I did not want to describe as pain because it does not fit what I have known before as "pain." On my worst days, I just feel completely wrong- almost like there is something inside my body that is too big and wants to explode, or like I am carrying around poison that is just making my body feel awful. I become reclusive and try to stay away form social activities, my friends, etc., and just do my best to continue to go to work and fulfill all my normal routines. Forcing myself to be "fine," however, has come with a severe physical and mental toll.

    I recently went to see a gyno-urologist. She told me my bladder is working fine and that I have no detectable infection. She set me up with an appointment to get an ultrasound to check for other issues, but then asked me if I had heard of interstitial cystitis and suggested that might be a factor. I said "kind of" because I have read the name before, but in reality she sent me out of her office with really no idea, until now when I have done some online research.

    I have not been officially diagnosed with IC, and many of the things I have read on here I have experienced in the past 6 months- the funny feelings of knowing something isnt right, constant pressure, increased urgency, doctors and other people not taking your symptoms seriously, and the downward spiral of confusion and depression of not thinking that anything is going to cure you. After reading many of these stories, I am thankful I have only dealt with this for 6 months and not years- I can't even imagine.

    Although I am relieved to hear that others are experiencing this, I am also terrified. Hearing that you may have an incurable disease is not easy at 22. So many thoughts are racing through my head- how will this affect my life? how will this affect future relationships? will i have a normal sex life? I am a huge fan of adventure and traveling, and am worried if this is going to change my possible plans of living abroad.

    Right now I'd really like to hear words of encouragement. On my worst days, I find myself really down. I honestly begin to think I'm never going to feel "normal" again. I find myself jealous and angry being around my friends who are feeling fine. I can't believe I've ever wasted time or worry on every petty issue I have in the past. I know that during this process it is crucial to be positive and take one step at a time, but I think that I am still grieving for the life I feel like I may have lost.

    Would really appreciate some words of encouragement. I just want someone to tell me it is possible to improve and feel like myself again, because right now I am having trouble remembering what that feels like.

    Thanks for your support,
    Jessica - 22 years old in Washington DC

    Symptoms began Sept 2010
    Diagnosed Sep 2011 (after being prescribed every antibiotic possible)

    Currently Trying:

    “Walk on with hope in your heart, and you'll never walk alone...”

  • #2
    Jessica Jessica jessica
    What are we going to do with you aye?
    Now ...before you think I'm not going to take you seriously, forget that cause I am, In fact I am taking you very seriously, and so are you...admit to are taking this, and that, and yourself far, far to serious.

    In all fairness I can identify with you and how your thoughts are all over the place, and the million and one questions...but please be careful, you will draw all the negative things to yourself fact didn't you say that yourself? something about how you KNOW you should be positive..but hey ..not that easy is it ?
    You are at a fantastic age...the world your oyster yep?.
    At 22 I had two kids and a big fat mortgage and a Hubby who lost his marbles due to seeing his mates blown to bits in Ireland, (you're to young to remember that) Gosh I've had many scary moments, good one's to but it's probably the scary one's that has made me whom I am, (I'm a smashing person but I wouldn't tell everyone)

    So that's me in a little nut shell and what I see of you, is someone who has a few challenges ahead, this is one of them.
    Now how you handle this challenge is up to you already have a urogynie on board who sounds alright to me by what youv'e said, and now you have to use more of her expertise in finding out what she suggests you do and take to help you get back to the you that you once was and you can do that. Get your body on the right track again let it become a project for you only the positive outcomes of a naughty bladder, get some funny films in to watch... treat yourself to something nice ...believe in yourself jessie and believe you can do whatever it takes to get back to you again, even if that involves treatment.
    I am not taking the place of any medical person here..I'm giving to you the words of comfort you asked for must do the rest, be good to yourself take care good luck and keep us posted as to what's happenning. I do hope
    I've helped a bit. love from Madi
    xx ps I'm always here.


    • #3
      I totally agree with Madi- great advice. I'm 22 also and you could've easily written my own story. I was just fine until middle of January this year. All of a sudden I think I have your garden variety UTI so I get some antibiotics and try to move on. Only thing was, the antibiotics weren't doing anything for my symptoms. After two regular doctor appointments, two ER visits, a 24 hr hospital stay, and 6 different antibiotics I had become traumatized and decided to fly home to see my own doctors. I live in vegas with my boyfriend who's in the air force but my family is all in the midwest where I grew up. Finally up there I had several doctors tell me they strongly suspect IC. I'm still waiting to get an official diagnosis but all of my symptoms point to it. I've experienced the same depression and anxiety as you. And I already had problems with that because my mom is terminally ill. I lost a lot of weight and wasn't sleeping very much for several weeks but I finally decided that I'm not going to let IC rule my life. I do have to make changes but my boyfriend and family have been incredibly supportive and I try to remind myself that I still have a life to live, even if it might be more difficult now. I do wonder how it'll affect my future.. I just got accepted into a new college to get a vet tech degree and hoping I won't have to miss too much class or anything. As far as sex, I haven't had a whole lot of experience with how it affects me yet. But that has a lot to do with the fact that I've been battling yeast infections and bacterial vaginosis before that because of all the antibiotics. Even if it is a problem though, you could try things like vaginal valium suppositories (I'm gonna ask my gyn about those) or other stronger pain meds. Once you get a treatment that works for your bladder, your sex life should also improve (if it's been a problem). Definitely read through the section called Romance and Intimacy here on the site if you haven't already. The biggest piece of advice I can give is don't be like me and let yourself drown in the negatives of it. It's not healthy for you or those who love you. Maybe go talk to a counselor if you feel comfortable doing that. I've seen one off and on for several years and am trying to find one down here. Hang in there!


      • #4
        Hello, I'm 30 years old and I've had alot of anxiety for most of my life, I've also had some depression. I would not recommend taking medications for either of these issues because they will only make things worse. If you drink alcohol it will increase your overall anxiety by a ton. For me that was a major decrease in anxiety when i quit drinking. I drink occasionaly now because I've had my anxiety under control for a couple years but now I have IC so no more drinking for me.

        You say you feel bloated and that you feel like you have toxins inside that needs to come out? That may well be the case. How are your bowel movements? Do you pass daily? Unhealthey diets can make your bowels stuffed which can make you reabsorb toxins that you would normally eliminate. A healthy diet with unprocessed food and lots of vegetables will keep your bowels healthy, this will also help reduce anxiety. I hope you feel better soon. Good music helps bring my spirit up. I would recommend Bob Marley
        Last edited by ICNDonna; 03-03-2011, 01:56 AM. Reason: Removed direct medical advice.


        • #5
          Hello Amy
          First thank you for thanking me..and I guess the rest of the mail was to jessica,so well done you, also well done on positive thoughts ..I really don't think (as much as they say they do ) anyone can fully understand how problems/illness/not working right organs affect and almost take over our minds...which really boils down to mind and body working in harmony do you think?
          Basically our bodies are not going to like drugs we stuff in to try and get better but of course sometimes we have to or do we? another question.
          So if we didn't all the pharmacuital companies would go bust and that wouldn't do either all those jobs lost etc.

          Which reminds me Amy, I am a registered Animal nurse.
          You are going big steps higher to be a vet..Well done again.
          I have in the past... years in the past been responsible for frontline animal rights,when we did the right things not the way off course stuff...after 30 odd years of moonlight trips to puppy farms, boycotting share holders meeting with good ole spike milligan me and my team of 40 thousand world wide helpers/supporters saved millions of animals..pharmacuctical companies were not left out either. I can say all this openly now as I handed my post over seven years ago.
          I live in Kent and you may have heard of one of the biggest companies closing,thousands of people to loose jobs...any way I digress I always do....We obviously need medication and along the way we hit upon some good ones and some not so ..this forum is an amazing place to start to get some ideas.
          Because of my prowling around here getting some really good info I was able to take some pretty impressing stuff before my cystoscopy yesterday, the surgeon was so impressed he almost offered me a job!!! I'm a bit sore today and I had requested they didn't part legs to far on stirrups ...dodgy hip blimey three years ago I was diving in Maldives and red sea (falling to peices me) not really so, where was I ? ah yes G.a. right out nice feeling but I think he forgot about legs ouch. Shall hang a poster round my neck next time ..unless he thought ..that'll teach her to know more than I do !!!!
          another Joke.
          To sum this up to both Jessica and Amy's not easy but try to look at why the bladders telling you something. is it something you drink? I'm sure I did mine harm by all the diet cans (wont mention the name)
          So look to your diet says she falling to peices but you see I can say this cause I know where I've gone wrong (most of the time) you might have to change lots of dietry things but you could make it fun/ a project etc but whatevercomes out of this,you have been on a learning curve...but one other thing amy ...was the romance and intimacy for me to read? Tony's going to love you when I stick on his lap to read....weve been through the jumps off wardrobe chandelier bit good fun bit boring now . lots of love to you Amy you will get better please take the meds doctors think are best for you but make sure you have that same feel.
          Lots of luck for your future in one of the most rewarding work ever ...let us know keep us posted sweetheart
          kisses from madi


          • #6
            I'm sorry IC is a possibility for you. Please remember that most of us, with treatment, feel good most of the time. Once you have a specific diagnosis and begin takine steps to improve life will get better.

            I think it would be a good idea to begin an IC diet right now. It can't hurt and just might help you feel better. The link the latest food list is in my signature below.

            Warm hugs,
            Stay safe

            Elmiron Eye Disease Information Center -
            Elmiron Eye Disease Fact Sheet (Downloadable) -

            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:


            Diet list:

            AUA Guidelines:

            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.

            Anyone who says something is foolproof hasn't met a determined fool


            • #7
              thanks everyone for your support! i was panicking a bit and realizing that was only making things worse, so now i have calmed down quite a bit. going to see another uro on tuesday who can hopefully help me figure out some treatment plans.

              i know this will be a long road but i am so thankful to have the support of everyone on here! already i've learned so much and feel like i am better able to understand what my body is telling me, and will be informed enough to hopefully make the best out of my uro appointment.

              i have started the diet and the most painful of my symptoms seem to have subsided! i will do my very best not to cheat, and i will get through this just as all of you are!

              Jessica - 22 years old in Washington DC

              Symptoms began Sept 2010
              Diagnosed Sep 2011 (after being prescribed every antibiotic possible)

              Currently Trying:

              “Walk on with hope in your heart, and you'll never walk alone...”