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  • Newly diagnosed with IC

    Hi Everyone,

    I am a 29 year old female and was just diagnosed with IC on Monday afternoon. Well, at least the words out of the urologist's mouth were "I believe cystitis is causing part of the problem" and "I believe you are in the early stages of IC". The RN in the room and I both took it as an official diagnosis. Anyway, my journey to the diagnosis of IC began last August of 2010 when I was 28. It was a Friday morning, and I woke up with severe fatigue, tons of nausea, and a low-grade fever. I could barely lift my head off of the pillow, that is how tired I was. Later on that same day, I started to feel some crampy pelvic pain, only on my right side, similar to menstrual cramps. This is in addition to the earlier symptoms. I knew that it was too soon in my cycle for it to be cramps. The pain, to this day, is always just to the right of my bladder. It can be crampy, stabbing, or burning. The next morning I went to urgent care when they opened, because the pain got worse. The did a urine on me, and I believe it was positive for ketones, blood, and protein. They sent me to the ER for a Cat Scan to see if I had kidney stones, a ruptured ovarian cyst, or appendicitis. Everything checked out to be negative, so I was sent home. My doctor on Monday sent me back to the ER to see if they had missed anything, and they still had no conclusion about my pain, so I was sent home, again. A follow-up to a NP at my OBGYN's office showed no signs of any gynocological issues going on. All urines during this month, also, tested positive for a trace amount of blood.

    I had a brief spell from September to October where my pain and the other symptoms seemed to subside. Then, in November, all of my symptoms came back. Additionally, I noticed that I was urinating a little more than usual, because I was also noticing some urgency that had never been there before. Hence, I was urinating more to try and get rid of the urgency. At my request, I had my PCP refer me to a urologist. After completing a lot of paperwork very thoroughly, and answering a lot of specific questions, the urologist and the NP in his office performed a pelvic exam. I was told that I had pelvic floor dysfunction and that my pelvic pain was the result of pelvic floor spasms. I said "what about the microscopic hematuria?". And the uro and NP attributed it to me sometimes straining to start my urine flow. In my mind, I know I have never strained hard enough to begin urinating so that it would cause microscopic hematuria. I am also a medical professional, so I know these things, LOL. They gave me some samples of Prosed (not even a Rx) and prescribed pelvic floor PT. I left that office crying from the pain of the exam, as well as because of the frustration of not knowing what PFD was and what the PT was about. I never did go to PT. I decided, instead, that I needed another opinion...

    I decided my 2nd opinion better come from my OBGYN (the actual doctor, not NP, no offense), who I trust with my life. I couldn't get in any sooner than my annual exam, which was earlier this month. She did a pelvic exam and kind of disagreed with the PFD diagnosis. She said I might be spasming down there a bit, but that PFD would not cause a low grade fever and/or microscopic hematuria. And, my urine that day was still trace positive for blood. She decided she wanted me to have a microscopic hematuria work-up. She referred me to another urologist. Last week I had a consultation with him, and he mentioned the possibility of early IC. On Monday I had an in-office cysto with a KCl sensitivity test. LOTS of pain with the catheter and the scope. He diagnosed me with early IC based on all of my symptoms (I have all of them that are listed in the Elmiron pamphlet), based on the KCl test making me a little crampy (on a scale of 1-5, I gave the pain a 2), and based on how I answered the questionnaire on Elmiron's website. I got a score of 13 on it. I just started on Elmiron yesterday.

    So, with all of this being said, here are some questions I have:

    1. My in-office cysto showed a healthy-looking bladder with no stones, tumors, ulcers, or glomerulations. My uro said I could still have IC because early IC can present itself with a healthy-looking bladder. Any thoughts on this?

    2. My frequency is not too bad, normally 8-10 times within a 24 hour period. Does anyone else have frequency that is not too horribly frequent?

    3. My worst with frequency was 16 times in 24 hours. This was this past Friday. However, I had no pain. Has this ever happened to anyone, as in no pain but more urinating in one day?

    4. At my worst (flaring), I always have the following other symptoms: low-grade fever, microscopic hematuria (trace positive for blood), nausea, and lots of fatigue. Does anyone else flare this way?

    5. Finally, my pain occurs soon after urinating, while my bladder is filling up with urine. It is definitely painful by the time my bladder is full. There is a short time period of relief right after I pee, and then the pain begins again. Any thoughts?

    Thanks in advance for your responses! Sorry this is so long, but I wanted to be thorough!

  • #2
    Welcome. Sorry you ended up here, but glad you're finding answers. I will answer a few of your questions for you.

    1. My in-office cysto showed a healthy-looking bladder with no stones, tumors, ulcers, or glomerulations. My uro said I could still have IC because early IC can present itself with a healthy-looking bladder. Any thoughts on this?

    I have never had a cysto or a hydro, but I've read many people say on here that their bladders look completely normal in a cysto. It isn't until the bladder is over-filled for the hydro that the pinpoint bleeding and such can be seen.

    2. My frequency is not too bad, normally 8-10 times within a 24 hour period. Does anyone else have frequency that is not too horribly frequent?

    I generally go between 4-7 times a day. Definitely have IC.

    3. My worst with frequency was 16 times in 24 hours. This was this past Friday. However, I had no pain. Has this ever happened to anyone, as in no pain but more urinating in one day?

    I do not have pain in my bladder, although I do have pelvic floor pain. I do urinate more frequently when flaring, but still have no pain.

    4. At my worst (flaring), I always have the following other symptoms: low-grade fever, microscopic hematuria (trace positive for blood), nausea, and lots of fatigue. Does anyone else flare this way?

    Nope, not me. I don't think fevers are linked to IC at all. I do get all of those symptoms when I have an actual UTI though!

    5. Finally, my pain occurs soon after urinating, while my bladder is filling up with urine. It is definitely painful by the time my bladder is full. There is a short time period of relief right after I pee, and then the pain begins again. Any thoughts?

    I'm sorry I can't help you with this. Unless I have a UTI, I don't actually have pain with urination.

    Good luck to you. It is great that your doctor thinks this is IC in the early stages. Once you find the right treaments for you, I'm sure you'll be feeling miles better!
    Symtoms started July 2010.
    Severe pelvic floor pain only.

    2 time PT graduate!
    In medical remission since August 2011; able to eat and drink anything I want currently.

    IC meds:
    200 mg Elmiron in the morning
    100 mg Elmiron @ night
    Macrobid after intercourse

    03/11 07/11 01/12
    If at first you don't succeed: 07/26/2013!

    Comment


    • #3
      meResque, thanks so much for your quick reply! I am keeping your responses in mind. I guess all of us with IC are so different in our clinical presentation.

      Comment


      • #4
        Hi Locke,
        Hope you'll be doing better soon. I'm not diagnosed yet, so I don't feel I can answer your questions, just a quick remark: I feel fatigue too when flaring, but I think any abnormal quantity of pain causes fatigue, whether from IC, UTI, or any other disease. Sometimes that fatigue feels like the worst among all the symptoms.
        The fever doesn't sound very much like what I read about IC, but are you someone who gets feverish easily?
        Good luck with all of it!
        Not diagnosed yet

        More than a decade of 'bladder issues'
        Main symptoms: burning pain in urethra, urgency, frequency
        Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
        Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
        Starting physical therapy soon

        Getting married 7/7/2012

        Comment


        • #5
          I'll try to answer your questions from my own experience.


          1. My in-office cysto showed a healthy-looking bladder with no stones, tumors, ulcers, or glomerulations. My uro said I could still have IC because early IC can present itself with a healthy-looking bladder. Any thoughts on this?

          WHEN I HAD MY FIRST OFFICE CYSTOSCOPY MY BLADDER LOOKED NORMAL AND HEALTHY. IT WAS NOT UNTIL IT WAS DISTENDED WITH ANESTHESIA THAT THE IC BECAME APPARENT.

          2. My frequency is not too bad, normally 8-10 times within a 24 hour period. Does anyone else have frequency that is not too horribly frequent?

          IF I'M IN A FLARE, I CAN GO EVERY HALF HOUR. NORMALLY I WILL GO PRETTY MUCH EVERY HOUR.
          3. My worst with frequency was 16 times in 24 hours. This was this past Friday. However, I had no pain. Has this ever happened to anyone, as in no pain but more urinating in one day?

          IF I'M FLARING AND HAVE INCREASED FREQUENCY, IT IS DEFINITELY PAINFUL.

          4. At my worst (flaring), I always have the following other symptoms: low-grade fever, microscopic hematuria (trace positive for blood), nausea, and lots of fatigue. Does anyone else flare this way?

          NO FEVER, NO NAUSEA, BUT TRACE BLOOD AND FATIGUE FROM THE PAIN/LACK OF SLEEP.

          5. Finally, my pain occurs soon after urinating, while my bladder is filling up with urine. It is definitely painful by the time my bladder is full. There is a short time period of relief right after I pee, and then the pain begins again. Any thoughts?

          IF I'M FLARING, THE PAIN IS WORSE IMMEDIATELY AFTER URINATION.

          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          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: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          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.
          [3MG]

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

          Comment


          • #6
            Thanks for your reply, Eline. I agree with you, I think lots of pain can naturally cause fatigue. Sometimes I wonder if I have chronic fatigue syndrome. I actually feel I am able to function perfectly with about 10 hours of sleep, although I never do sleep that long. I usually don't get feverish easily, unless I am having tons of pain. Maybe the low-grade fever is from some inflammation.

            Comment


            • #7
              Donna, thanks for all of your input. It is interesting to read on here that you also had a normal looking bladder in your in-office cystoscopy. Well, I guess since I am already diagnosed, I won't be asking for one with hydrodistention. Why go through all of the pain and high medical bills? But, can't they also stretch your bladder out during that type of cysto? I think that might be what needs done with me. When the RN was instilling the water solution, I felt a lot of urgency suddenly, and she was only halfway done with instilling the solution. I was convinced I was going to pee on her! So I am wondering if I have a small bladder, too. Any correlations to IC and small bladders, that you know of?

              I also find it interesting that you have pain immediately after urinating. This was one of my primary complaints when all of this began last year. Every time I Googled "pain after urinating", I usually got nowhere. I usually found more info on "pain WITH urination", which is typically not the case for me. Now I am finding that "pain after urinating" really does point to IC, and/or PFD. And, I hate the way my bladder feels when it is filling back up. It is a bad sensation that has kept me from falling back asleep at night.

              Thanks again for your responses!

              Comment


              • #8
                Every icer is different did your Uro tell you about the IC diet?
                <center>
                <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
                </center>

                Comment


                • #9
                  Hi Linda, thanks for your reply. Yes, he did mention the IC diet and gave me an Elmiron information kit, which contained (among other items) some information on the IC diet. I am going to do some grocery shopping this weekend and pick out some items from the diet list. It will be really hard for me to give up all of my favorite foods and beverages, but at least, when I introduce them back individually, I will know which ones are truly triggering my symptoms. For now, I only know of beer and soy milk to be triggers to my pelvic pain. So, we'll see what happens.

                  Comment


                  • #10
                    Hi Locke,

                    Keep us updated on how you're feeling, and good luck with the shopping. I know what you're saying - I've been wondering about CFS as well. Actually, I've been 'tired' all my life. Not quite enough to see myself as disabled, but not enough to consider myself as healthy either. I should get out of bed now ;-)
                    Not diagnosed yet

                    More than a decade of 'bladder issues'
                    Main symptoms: burning pain in urethra, urgency, frequency
                    Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
                    Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
                    Starting physical therapy soon

                    Getting married 7/7/2012

                    Comment


                    • #11
                      During a hydrodistention, the bladder is stretched --- and in some instances this relieves symptoms. I am one who is helped by this procedure.

                      You'll find the latest IC diet food list at the link in my signature below. It's a little more complete than most other lists. It's printable so is very easy to work with. There's enough variety of foods listed as IC friendly to have a balanced, tasty diet.

                      I find if I concentrate on the things I CAN have, rather than the ones that are a problem, I feel much happier at the dinner table.

                      Warm hugs,
                      Donna
                      Stay safe


                      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                      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: http://www.ic-network.com/patientlinks.html

                      Sub-types https://www.ic-network.com/five-pote...markably-well/

                      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                      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.
                      [3MG]

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

                      Comment


                      • #12
                        I was diagnosed with IC in May...because the initial test indicated a small bladder, my Uro had me go through a more in-depth test study which confirmed the IC diagnosis as well as a VERY small bladder. He said that can be associated with IC. I am having a Coaptite procedure for my incontinence issue in August and he said he will also be doing some other things (I honestly can't remember) since I will already be under sedation.

                        Comment


                        • #13
                          the procedure that they did put me to sleep and filled my bladder and release it said i did great with that for a 52 year old, but when they released the fluid that were they saw the uclers that form in the bladder. it did help me too.. i started the imerion a week ago and i can tell a little bit of a difference but if i didnt have the urelle to get me through i would be in bed all day.. i do admit that the busier i am that my mind is off of it.. and i dont seem to hurt as much.. i am hoping that i will begin to cut back on the urelle sometime in the next few weeks, but that is what worries me, being on the urelle so long
                          Take care and i do think following the diet does help..

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