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Could I possibly have IC?

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  • Could I possibly have IC?

    Hello, my name's Mandy and for the past few days I've been having a problem with my body.

    I woke up the other day with an extreme burning sensation in my abdomen. When I went to urinate, the burning sensation ensued and I had a feeling like I was still full. Fifteen minutes later I was met with the same feeling, only less intense, but the same thing happened to me, the pain was still present. An extreme burning sensation met me, and I could only pass urine in a small quantity. This continued throughout the entire day for up to at least 30 times, and I became quite worried. The next day didn't seem to be getting any better, so I took a urine sample to my doctor for a urinary tract infection test and figured that was that. Maybe I could just get an antibiotic, and they'd send me on my way.

    This morning my symptoms have became a lot worse, and my doctor called telling me there was no bacterial cultures that could be found, so I did not have a urinary tract infection like I origninally believed. Today I have had to urinate over 50 times, and the pain is getting worse. I have also noticed that my stomach is swelling up a little as a result.

    Earlier today I looked up my symptoms in a medical book, and it said something about Cystitis, but little information was provided. I found many sites online in the research of this condition, and the symptoms relate to my recent discomfort. I have to urinate frequently, painfully, and in small amounts. I feel fatigued and am getting much more sleep than normal, and my back and abdomen are in discomfort.

    I am very frightened of this disorder, since I am only 18 and have never heard of anything like this until now. I am also not the typical person to think she has something based on a whim. Would anyone shed a little light and advice on this for me? I don't know what I should do.


  • #2

    I hope I can help here. I would start by reading the patient handbook on the main page here. it has alot of info about symptoms and treatments and so on. This is just to educate yourself a little. Second have your doctor refer you to a good urologist or maybe a gynecologist. I wouldn't jump to the conclusion of IC just yet, it could be something else. Lots of things mimic IC. If your symptoms match those of IC I would educate myself enough so as to be able to talk to a urologist about it. The most important thing is to not panic and despite what you may read on some sites if you do have IC it's not a death sentence. Most of us live a normal life with only IC as a minor annoyance. It's always hard in the beginning and especially the diagnostic process can be hard for some but as I said before don't jump the gun just yet. See a urologist asap and if the discomfort becomes to bad go to the ER. If you have any questions feel free to PM me! God Bless!!!



    • #3
      I totally agree with havingsuccess' post. This really could be something else. If it was me I would ask my GP for a referral to a good urologist and see if he or she could do some further testing to rule out IC or some other things that could mimic those symptoms.

      There really are other things that could be causing your symptoms, but like success said, if it is IC you may be just fine. Many people with IC go on to lead normal lives.

      Diagnosed August 2001

      Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

      Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

      I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


      “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

      “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


      • #4
        Hi Mandy,

        Glad you found us. I'm 27 so I understand your fear. I'd never heard of this either.

        Definitely find a URO. They can help more than GP's. There are listings of knowledgeable URO's in this site. Just search your state and you can find one nearby.

        Your symptoms sound kind of similar to mine when this first began for me. I didn't have alot of pain just feeling not empty. I had a kind of burning tingle like I had to constantly go.

        You can also check out the IC diet on this site. I think thats what helped me alot along witha med called Elmiron. Try watching what you eat and see if that helps until you can get to the doc. Don't be afraid to go to the ER if the pain gets bad.

        Keep us posted and good luck.
        I hope it's not IC.

        grouphug Erin

        PM me if you'd like
        [email protected]


        • #5
          Hi Mandy and welcome to the boards. Have your dr refreerr you to a urologsit. It could be something else or it could be ic. NOt a death sentence. Please let us know how you are doing.
          Hang in there , There is hope.
          There is hope. Prayer works.

          Love, Debbie


          • #6
            i do know your feeling i agree dont jump the gun yet it may not be ic I pray it isn't. I remember going to the uro and he said it sounded like i had ic I looked at him funny and said what is that then i looked at my husband to kill him lol the doctor said Mrs. Greenway its nothing that you can catch but we had to do more test to make sure this is what you have a week later i had the test sure enough it was ic but i have learned to deal with it now Thank the Lord.
            please read our pat. handbook and maybe change your diet around alittle bit to see if that helps while you are waiting to get into a good doctor. you will find a diet at the top of the page where it says browes our site. good luck and please keep us posted on what you find out we are here for you 100%
            Welcome to the icn grouphug
            Medicine taken daily or as needed:
            1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
            2. MS.Cotin 100mg 3x daily
            3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
            4. Fentanyl 100 mg Change every 48hrs.
            5. Gentamicin 80mg install after each rescue treatment
            5 Leviquin 500mg self start as needed.
            6. Klonopin 1 or 2 daily as needed.
            7. Prosed/DS as 1 every 6hrs as needed.

            I have IC, but IC doesn't have me anymore!


            • #7
              Hi Mandy and welcome to the IC network, and the family. I would definitely try and get an appointment with a urologist, and see if you can get some help, and a diagnosis. Like the other gals have mentioned, if it is IC, a lot can be to done to help you lead a fairly normal life. There are meds and different ways of dealing with it. Diet can be a big help also, read the patients handbook and it can be very helpful. Please keep us posted as to what you find out, and how you are doing. There is a wonderful support system in place here, and gals always ready to give help and support whenever needed, we also have a few guys in the family as well. Take care and do try and get to a urologist. Hugs and welcome Iris hi grouphug
              Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.