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  • Anyone else like me? :(

    Hi, I'm a freshman in high school. I haven't been diagnosed with IC yet. My first symptom was a dull itching. Then I started getting the feeling like I had to go but nothing would come out. I always have this dull feeling like that now. My mom says it's because I'm pretty petite and that I will grow out of this feeling. I guess I have a mild case of IC, because I'm not in the bathroom every second - I go about 2 times at school. I feel like I have to go, but I know nothing will come out so I just deal with the feeling. This is really taking over my life. I'm going to an IC specialist to see what's going on, but it's not for about 2 weeks. What medications do you guys find helpful? Are any of you in remission?
    -Caroline

  • #2
    Hello
    I just wanted to say to the IC network. I am sorry you are having a hard time. I hope you can find the answers you are looking for here.
    Feel free to ask any questions and the wonderful support group will answer.
    Take care and hang in there!
    Current diagnosis
    Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
    Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro

    Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough)
    Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
    Interstim implants--8 plus surgeries for them.
    I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at [email protected].
    One day at a time

    Comment


    • #3
      My main symptom is urgency. I do go more often than most normal people but, not all the time. I will say when I flare my frequency does go up a lot. I am not in remission but, since my meds started working I am doing better and better. Six months ago I was a mess. I am very excited about my progress and I feel I owe so much of it to this site but, that is a whole different story. My point is it could be IC even though you do not have a frequency problem. Only your doctor will be able to dx you. If it is IC you are lucky to have caught it so soon. You will be able to find the right meds to help you feel better and go on living your life.
      Last edited by Sally939; 03-10-2008, 03:28 PM.
      Daily Meds:

      IC-Meds
      Ditropan XL 5 BID, Elavil 50 QD, Elmiron 200 BID, Hydroxine 50 BID. As Needed: Bacofen 20, Prosed DS, Hydrocodone/Apap.

      Other Meds
      Adderal 10 QD, Remmeron 37 QD (I take 1 1/2 of 25 mg)

      With the help of my doctor moving my meds around a bit by increasing this and decreasing that I have found a good combination of meds (for now and I pray a long time from now).

      Comment


      • #4
        There are some things you can try which might make you feel better while you wait for your appointment. I know it isn't easy, but if you're drinking sodas, fruit juices, coffee, or tea, they could be making you feel worse. If you scroll to the top of this page and click on "diet" you'll find some other things to avoid.

        And be sure you drink enough water to help keep your urine diluted.

        I know two weeks seems like forever, but you'll be seeing the doctor soon.

        Warm hugs,
        Donna
        Stay safe


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        Comment


        • #5
          I'm guessing you like the show One Tree Hill??? OMG I LOOOOOVVVEEEE the show... sorry but i had to say that. (i'm 21 btw)

          My symtoms arent really like yours. Mine started off similar to a urinary track infection, the buring and pressure basically pure misery. I never had the dull feeling your talking about. Sounds annoying, but im not sure it really sounds like ic. I hope the is specialist will help ya determine what the root of the problem is and fix it. Did he schedule any tests for you, like a hydro with anesthesia?? either way keep us posted on your dr visit.

          Have you tried an otc med for pain? like uristat? also try the ic diet, ya have to find out what are your trigger foods and stay away from them! If ya have any questions feel free to pm me... or talk about one tree hill

          sending hugs
          Rachel
          ***Rachel***

          Dance like no one is watching
          Love like you've never been hurt
          Live today like it's your last

          Dxd with IC in June '06

          Comment


          • #6
            thanks for the positive feedback. this is so confusing for me, because i really dont have much pain. I just have the feeling like I have to go but nothing will come out. i only go 1-2 times at school, it's just the feeling I have to deal with. I hope it's not something bad, like a tumor or something. All of you guys seem so miserable when I'm annoyed but im not like dying. Ugh. i just hate it when everyone around you - especially at my age - is normal, and then i have to deal with this. it is a big distraction.

            petrie- yes, I LOVE one tree hill! it's so addicting. i really hope nathan and haley don't get a divorce.
            -Caroline

            Comment


            • #7
              me too!!! thank god nanny carrie's gone... she was horrible!!!! too bad peyton and lucus arent together too. BOOOO lol Cant wait for tuesday's episode! ttys!
              ***Rachel***

              Dance like no one is watching
              Love like you've never been hurt
              Live today like it's your last

              Dxd with IC in June '06

              Comment


              • #8
                also, what i noticed by reading many of the forums on here is that most of you say your symptoms get worse at night. i actually feel best when im trying to fall asleep. i dont know why but my symptoms never bother me at night time. i can sleep all the way through the night - even up to 12 hours. doesnt this seem odd? ughh, im so confused. i dont know if i have IC or not!
                -Caroline

                Comment


                • #9
                  Have you talked to your doctor about these symptoms? Does your doctor think it is IC?
                  Current diagnosis
                  Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
                  Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro

                  Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough)
                  Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
                  Interstim implants--8 plus surgeries for them.
                  I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at [email protected].
                  One day at a time

                  Comment


                  • #10
                    what symptoms make you think you have ic? there are a lot of illnesses that shold be rule dout before a dx of IC is made. Th good news is that there are many illnesses out there that mimic IC but have actual cures and therapies so I am crossing my fingers that you have a more benign condition and will get some great help from the doctor.

                    Comment


                    • #11
                      Hello everyone! i went to the doctor yesterday, and he said that he said that its highly unlikely that I have IC. he thinks i have something called 'voiding dysfunction' or something like that, where the bladder goes into spasms. He said this could be happening because i was potty trained too early (which is true, i was very early according to my mom) or that when i was younger i held it in for awhile. He is putting me in prelief to see if that helps, and he is also going to put me on ditropan. He also gave me a sheet that tells me I need to go the bathroom every 2 hours, even if I don't have to go. He says its a long process but my bladder could soon be back to normal in 6 months to a year. I hope I am getting the proper diagnosis. So it's good that i don't have IC.
                      -Caroline

                      Comment


                      • #12
                        I am glad to hear that he doesn't think you have IC. It is very important to make sure you see a Dr. and discuss your symptoms and let them help you find your diagnosis.

                        IC can sound like many different things that aren't IC like you have found out. So for anyone else going through what you are, you are one of those cases that shows how important proper diagnosis is. Good luck to you!
                        Jolene

                        "Life is what happens when you are making other plans" John Lennon

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                        • #13
                          Yay! I had a feeling it would be something else. I starte dhaving symptoms in high school ad I had to pee between each and every class and someties twice during lunch. My mom told me I woudlgrow out of it too but obviously that did't work. Anyhhow I just had a feeling that you were be dealing with something else-- i am so happy that you will be feeling better soon.
                          Tonights episode was brutal. Finally Dan's scariess paid off!

                          Comment


                          • #14
                            i know how you feel you may not believe it but i do. i have had sever IC since my sophmore year of highschool, before that i had mono which turned into chronic fatigue syndrone and fybromyalgia. all i want to be is normal none of my friends get what im going through and i dont think any of them will my pain gets worse throughout the day which is very common with IC pain. I basically missed all my highschool because of my health and pain this past fall they thought i was well enough to go to college i went i was scared that i was to sick parents said i wasnt so i stayed made friends was happy but was in so much pain they took me out it broke my heart that i lost those friends. you are so lucky you get to go to school even if it is hard. i dont know if your pain is a 1 or a 10 but i hope it goes away. i just have neurostimulators put in my back they seem to work with medication but thats only for very sevvere cases. BUt yes there are people your age with IC

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