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IC or not IC - My 6 month story of no real answers

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  • IC or not IC - My 6 month story of no real answers

    Hello all, my name is Jonathan (35 year old male) and I found this website today and thought I’d join. My story is about just 6 months old and I am not 100% sure I have IC yet, though my urologist has me on an IC diet. I’ll try to keep my story from being too long but want to give enough info to see if perhaps someone else has experienced a similar situation.

    In mid-March I had to go to Florida for a wedding and on the flight, it hit me that I really had to go, but just my luck we were descending and I couldn’t go. So I had to hold it for 45 min. and by the time we landed I literally had pain in my lower back and in my bladder. I was lucky to get to the restroom in the airport and felt completely relieved at that point.

    Well, I was down there 3 days and I noticed all of a sudden that I started having sensation type feelings that I had to go. Almost like a panic sensation. I’d immediately go to the restroom and feel somewhat better, but it would happen again later. The whole 3 days were pure torture as I kept having the sensation and worried at times that I had to go, but then I really didn’t. Other times I felt I had to go and really did. I kept thinking back to the plane trip and wondering if something happened by me holding it.

    Well I returned home and immediately got an appointment with my primary care doctor and he took a urine sample and said everything was fine. The concern, I guess, was that maybe holding the urine for that long may have caused a UTI or other infection, but nothing was found. He said he’d refer me to a urologist.

    Well, I went to the one he referred me to and they took a urine sample and did a physical prostate exam. The urologist really wasn’t sure and prescribed me with some sort of anti-inflammatory sense I mention a sensation or tingliness in the urethra and that my bladder when full felt more like it was full in the penis area and not the bladder. Nothing really got better and I went back and immediately was given to a PA and she thought I had an overactive bladder and gave me samples of Vesicare.

    I took the vesicare for some weeks with little to no change and had one last appointment with this urologist and he really didn’t make me think he knew what he was doing, so I changed urologists.

    Well, before I continue, keep in mind that months are passing and I am not incontinent, just have an irritated feeling in the urethra and occasionally have multiple urges to go to the restroom, but I guess my body is re-adapting to this new change as my bladder for the life of me does not seem connected to my penis anymore, with the sensation feeling.

    So, I go to the new urologist and he does a physical prostate exam and he declares I have a prostate infection (prostatis) as it hurt when he pressed on my prostate. Now he did press hard and it was only my second, so it may have hurt worse to me than normal. Anyways, a course of 6 weeks on antibiotics was prescribed and also another anti-inflammatory and basically nothing changed. I still had sensation at my desk of pressure in the urethra indicating perhaps I should try to go to the restroom and an irritated feeling. I did mention to both urologists that two times after sex with my wife I had a sharp pain and blood and they both just said it was blood vessels likely breaking, particularly if there was nothing continuing after that short time. Really, I was at my wits end.

    On a return visit, another $50 copay, the urologist wanted to set my up for urodynamics and a cystoscopy. Well being 35 and never having a catheter I asked if the cystoscopy would be better to have first. (I learned ONLY during the cystoscopy that they still use a catheter for numbing—nice of them to tell me.) So I set up the appointment for a cystoscopy which was last Tue.

    Now the urologist did not go over the procedure with me, except to say no strictures were seen, but set yet another appointment at the end of this month. The nurse gave me a IC diet sheet, which was the ONLY indication that is what he thought I might be suffering from. I will say that since mid-March until last week, I have not kept to any one diet and have not noticed the issues getting worse or better, but just remaining the same. In fact, in August on my anniversary I had quite a bit of alcohol and noticed no change and actually less problems, which is why I am just beside myself.

    I don’t know if I have IC or something else. I have mentioned to both urologists lower mild back pain on the right side and neither thought it was something to worry about.

    In short, my symptoms are as follows:

    1. Irritation in penis/urethra while sitting and sometimes when voiding.

    2. Bladder when it is full or in need of voiding no longer feels full in the bladder area but now feels full at base of penis or middle of penis.

    3. When I go to restroom, sometime it’s a lot and other times it’s not as much as it seems it should be.

    4. The flow is sometimes strong and sometimes weak.

    5. The sensation of urine coming out of penis feels different, almost like urethra is numb, yet still feels irritated, if that makes any sense.

    6. I do milk the urethra as I’ve had dribbles in the past and found this to help out and noticed that even after milking, shaking and blotting on toilet paper that when I go to sit back down at desk, 2 min, 5 min, maybe even 10-15 min. late a little dribble comes out just enough to make a little damp place in my underwear. But due to all of the other issues, I don’t even know what is normal with that anymore.

    7. Constant feeling even after going that there is something there. I have even had 16oz. bottles of water that before mid-March of this year I could drink and not have to go immediately, where now I’ll have to go 5-6 times in 2 hrs. occasionally, BUT not all the time. There’s NO consistency.
    That’s all I can think of right now but thanks for reading and any advice.

  • #2
    to the IC Network.

    It does sound like interstitial cystitis is a possibility. From what you wrote, you seem to be seeing a urologist who will help with reaching a diagnosis. It's good that you have been given the IC diet to follow. You'll find the latest food list at the link in my signature below.

    One 45 minute wait to go to the bathroom should not be a real problem for a healthy bladder --- for an IC bladder it could become very painful.

    Sending healing thoughts your way,
    Stay safe

    Elmiron Eye Disease Information Center -
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    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:

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    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


    • #3
      Thanks, Donna. Only caveat was that I was fine (as far as I could tell) before that flight. Not saying I might have had some signs, but everything is traced back to that time...


      • #4

        I am surprised he did not do the Cystro/Hydro in the hospital they put you to sleep for this precedure. But, that is one sure way to detemine if you have IC.
        Once that is possitive you can work on a treatment plan. Ask alot of questions you are paying for his time and you deserve answers. Also you came to the right place for support stick with the IC diet and drink alot of purified water.
        <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


        • #5
          Originally posted by Linda May
          I am surprised he did not do the Cystro/Hydro in the hospital they put you to sleep for this precedure. But, that is one sure way to detemine if you have IC.
          Once that is possitive you can work on a treatment plan. Ask alot of questions you are paying for his time and you deserve answers. Also you came to the right place for support stick with the IC diet and drink alot of purified water.
          Insurance would not cover a hospital visit and he said he did lots of these procedures in his office. It was painful and I was depressed as all I got was a diet which the problem is between the March incident and last week, I ate and drank whatever and never experienced it get worse or better. I could understand the diet if I feel better, but my diet is pretty bland to begin with which is also depressing. Not much to change. I am not 100% sold on it being IC. I'm afraid from what I've been reading that IC is becoming the easy diagnosis for urologists when they try two or three things and don't go any further. I had no indications of bladder problem prior to March of this year. Something had to have happened in or around that time. Now I did get diagnosed with low thyroid in December 2010 and not sure of thyroid - bladder connection, but you never know.


          • #6
            It does sound like IC, I wonder if I can present itself without the obvious cystoscopy results? Is there any other medication your doctor an prescribe like Elmiron? I know that takes a while to work but it could help aleviate some of your pain..
            Is there another uro you can get another opinion from about treatment?
            -Pammylynn Rose
            Wishing everyone a pain free bladder day!

            Painful symptoms start in May 2011
            Diagnosed with IC in Aug 2011

            Axert (only for rare migraines)
            Strict IC diet
            Gluten/dairy/egg free diet


            • #7
              Originally posted by Pammylynn8
              It does sound like IC, I wonder if I can present itself without the obvious cystoscopy results? Is there any other medication your doctor an prescribe like Elmiron? I know that takes a while to work but it could help aleviate some of your pain..
              Is there another uro you can get another opinion from about treatment?
              No meds have been prescribed for IC as I don't think he 100% has diagnosed me with it. When people talk of pain, I'm not sure of what they talk about as I really have no pain, just irritation and the other stuff mentioned above.


              • #8
                My 22 years

                I have been here a few years but never really posted much. I started having pain on 12/23/1989. Funny that I can remember that day but it was right before Christmas and it started like a strange burning that didn't feel like it was in my bladder. After the holidays, I went to my PCP and he couldn't find anything wrong with me. He suggested I go to the GYN, which I did. It was a coincidence that I happened to have a ovarian cyst at the same time( at the time it was thought to be the cause of the pain). The interesting thing was when they made me fill my bladder for the pelvic ultrasound, I doubled over in pain, so I was immediately taken for surgery to take care of the cyst. After recovering the pain continued and got worse. To make a long story short, I ended up going for an exploratory surgery with a partial hysterectomy if needed. He found that I had large varicose veins around my uterus so it was removed.

                Again the pain started and so did the worst part of this story. I also started what I thought were frequent UTI's. When the pain came back, I was put thru MRI's, ultrasound, x/ray of the spine. Finally was sent to pain medicine. The pain doctor decided to do cortisone shots directly into my pelvis. Along with that I was sent to a psychiatrist. I got a bad feeling right away about the psych, he would tell me about the patients that I had just passed while walking in. The last straw was when we went to a meeting with my GYN, the pain doctor and the psychiatrist. The psych told the other doctors things I had never said and told them that I was "in love with my brother". I am adopted and he took that and ran with it. I was almost suicidal by that point. My gyn took pity on me and also had noticed that the pain went away when I took pyridium during my "UTIs". He said I needed a female urologist (I thought he meant that the doctor was a woman LOL). I went and after some tests and a hydrodistension, I finally got my diagnosis of IC. Of course it is a good news/bad news type of thing. I had been a nurse for a while but had never heard of IC and there wasn't much around about it back then. He tried all the standard treatments, but the pain continued to be very very severe. A side note: I have memory loss for a lot of this time period, I found out from my pain therapist that a person's brain will not retain anything during times of severe pain. Also during this time my oldest child was having some severe behavioral problems and was diagnosed with bipolar disorder. I had to deal with violent temper tantrums several times a day on top of being doubled over with pain. I have 2 children that are 2 1/2 years apart and they were 5 and 3 when I was diagnosed. My urologist put me on ditropan, I took tons of pyridium, percocet in case of emergency and did hydrodistensions every 6 months. I was bearly surviving. I also applied for disability which ended up with me going in front of a judge because IC wasn't on the disability list at the time. I did get the disability. Unfortunately, my marriage did not last and I got divorced. I attempted suicide ( I have no memory!!) by laying down in the middle of the street.

                After my divorce, I was tricked into meeting a long haired rock guitarist. Appearances can be deceiving. He turned out to be straight edge, loving, compassionate and the funniest person I ever met. We have been married for 8 years now. My life has changed, I am able to work full time as a pediatric nurse, my pain is in better control, I also have a second career as a mixed media artist. I am still end stage. I have had the Botox injections with great success but the bladder is very scarred and right now I need to get tests to determine just how scarred. I am a patient at a pain clinic and I also see a pain therapist twice a month and it helps quite a bit.

                My advice is FIND THE RIGHT UROLOGIST!!! Not all urologists treat this disease in fact most don't because it is so hard to deal with. Also don't let anyone tell you your bladder symptoms are in your head, this is a common thread in other stories I have heard. I am available for any advice or help.
                Last edited by ICNDonna; 09-08-2011, 02:02 AM. Reason: Removed sales site.
                Pain started 12/23/1989, diagnosed 1990
                I am considered severe endstage

                Current meds:
                Avinza (pain clinic)
                Vyvanse (ADD)
                Zoloft (depression/anxiety)
                Vivelle patch (hormones)
                Relpax (migraines)

                Other problems: ADD,PTSD(from years of pain),Possible Behcet's disease,migraines

                Current treatments: Botox injections every 6 months, have had 4 and it changed my life . Hospital based pain medicine doctor, pain therapist

                Things that didn't work: Almost everything: Elmiron,DMSO,diet


                • #9
                  Does anyone have a loss in bladder fullness sensation? I really am reading a lot of posts and my symptoms seem to not match up much for other IC sufferers, so I am not sure and won't get to talk to my urologist until next Fri.