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  • Can Someone relate to my confusing Urologist Office Visit

    Ok - I....I went to see my ur on Monday because for the last 2 weeks my IC symptoms escalated and I was crazed with pain and in bed most of the time. He did an office pee test and said "yes, you have an infection" and put me on a strong antibiotic (ceptik?) and toradol for pain which did nothing and vesicare to help with the burning which also hasnt helped. The doc advised me to go to my pcp doc for anti anxiety meds which i did. That doc gave me seroquel to sleep. I havent felt any better after 5 days except to get some better sleep due to the seroquel. I called the ur office and the nurse told me i do not have an infection, the culture came out clean. She said to stop taking the antibiotic.
    Between two doc visits, tests and meds, this has cost me near $500!!! and i feel no better. Talk about depressing. I told the nurse for the doc to call me next week when he comes back to discuss this. Can anyone tell me whats going on here? Is this the typical ur doc? How should i handle this?
    Also.....my main pain complaint is burning/radiating in the urethra area. its constant not just when i pee. could this be a different problem? ive tried peridium and urelle which dont work.
    Thanks in advance for your concern and help.
    j

  • #2
    you need to be on a treatment plan for IC, what kind of treatments has he givin you?
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    • #3
      JReed -

      What may have happened is that the in office urine test may have turned up positive but when they sent it out to a lab, it may have actually been negative. Sometimes in office urine tests get contaminated..

      The antibiotic may be causing you pain. There are some antibiotics that make my bladder flare.

      I used to take vesicare - it takes 4 to 6 weeks before it will start to relieve symptoms. It needs to build up in your system.

      Have you tried baking soda and water to relieve some of your burning? Also, sometimes yeast (not necessarily an infection, but an overgrowth) can cause burning in the urethra and/or bladder.

      I hope this helps!

      Comment


      • #4
        Alot of ICers feel their pain in the urethra.

        Why did your doc send you to your pcp for anxiety? Is it supposed to help with your pain?

        I take vesicare, it is an OAB med, it helps me within a couple of days but I take it for frequency not for burning...it relaxes the bladder muscle so you don't get spasms. It works really well for me. Maybe your doctor thought spasms are causing you pain? I don't know but its not usually (that I'm aware of) prescribed for burning. Someone correct me if I'm wrong.
        Cindi


        Gelnique for frequency/urgency - works great
        Macrobid after sex
        Prilosec, continuous birth control pills
        synthroid .088mg, mucinex-d, restasis

        Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

        Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

        IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
        Great treatment flowchart on page 19 of the pdf

        Comment


        • #5
          Sometimes the initial test will indicate infection, but the culture result will be negative. I know it can be frustrating, but if it had been an infection, it could have significantly worsened without the antibiotics. I hope you're out of your flare soon.

          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


          • #6
            Unfortunately, it can be a typical problem. The urethra does become involved for a lot of folks. Bob sometimes wants to chop his off, especially after eating or drinking a no-no. Stick with the diet strictly and give it a good month before you start adding in "maybes" one at a time. Peridium does help him through flares, and he does not have to take it every day. You might want to give that another try, and maybe talk to your doc about increasing your dosage during flares. Heating pads help at these times as well. Glad your GP is helping you with your anxiety, that is the last thing you need right now. Sounds like he at least is on track. Maybe you should go in to see the uro and just have a chat and see where he is headed. A simple consultation without tests and stuff is usually less expensive.

            How familiar is your GP with IC? Maybe you can print some info out for him so he can have it on your chart. Our GP/NP has been our lifeline and we always take some new tidbits with us when we see him. He may be your ultimate doctor down the road. Sometimes uros throw up their hands, but it is good to have one on board in case new stuff comes out. Hope you feel better soon, take care. Jill, wife of Bob

            Comment


            • #7
              THANK YOU for all your responses. I really dont know what i would do without some help out there. I agree that the vessicare is only for frequency not the burning. There goes $ down the toilet. I am seeing my ur in 2 wks and yes a chat about where he is going with me will be addressed (focus on urethra pain). I am now thinking that most of my pain is in the urethra. What is urethraitis? and is it different or treated different from IC? I saw some posts say that people use a topical gel MSM from Jacobs Lab. It says not to use internally. How is this done? My ur sent me to my pcp for anxiety. She gave me seroquel to help sleep at night and perhaps help with my already existing derpression. She also ranted about how i need to get my head together because thats where most of my problems are stemming from. HUH?????????? I was shocked because i respect her and she is a really good doctor. Thank goodness my boyfriend was with me to counter her words, because i was already in a crisis mode and she made me feel worse.
              Also, can anyone tell me anything about the yeast factor? Is the yeast diet similar to the IC? I know yeast is a prblem for all kinds of illnesses and i believe my body is probably loaded with it. How do you get rid of it?

              Again, thank you all for your help and concern. God Bless. j


              Current Treatment:
              Cysta Q 2 caps a day (started 2 wks ago, no changes yet)
              Marshmallow Root Tea
              IC Diet
              Seroquel at night to sleep
              Heating Pad

              Comment


              • #8
                Oh my gosh, I can't believe your dr said that to you (ok yes I can). They have no idea how this feels. One of my uro's said, "Your just going to have to learn to live with the pain, many people live with chronic pain everyday." But, instead of feeling bad about myself I should have responded, "to what level of pain are we discussing?" This pain has been compared to end of stage cancer - and believe me, mine hits horrible, uncontrollable levels. I don't think these doctors while they are sitting comfortably and eating normally can begin to understand what this does to a person's mind. She should not have said that to you.

                Have you talked to your uro about uro jets? These are individual tubes of lidicaine that you can squirt up into your urethral area and it helps some people. MSM also worked for another lady on here if I remember correctly. If that is where you feel the pain most - those could be worth trying.

                As far as yeast, there are many discussions about it on here. You can go to search and type in yeast and see some suggestions. My question is why do IC people think that we have more yeast than other people? Or is it that we don't, but the amount we have cause issues because our bladders are already damaged?

                Also, I just wanted to add that I was in a horrible flare when I went in to see my uro and he said, "I see why you have pain you have an infection." This happened twice because I was taking Pyridium and that messes up their machine there for testing (the NP finally told me). I would be prescribed Cipro then told there was no infection. I do buy those test strips to test my own at home and I can't take Pyridum anymore since it now makes me sick to my stomach and faint. So, I don't have to worry about it clouding the test strips.

                I hope you feel better soon.
                Teresa

                We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                Comment


                • #9
                  Urethritis

                  I had a bladder infection which was ignored by my doctor, eventually became urethritis, and I think is what eventually led to the development of my IC.

                  My urologist did a cystoscopy and found an area of redness and inflammatory polyps in my urethra. He explained it as an infection deep in the tissues that don't have a great blood supply, so I would have to be on antibiotics for 3 weeks to give it time to fight the infection. He also told me that a urine specimen would not show any infection, again because the infection is in the tissues, not the urine. I responded great to the antibiotics, but shortly after the symptoms of IC started to develop. Anyways, all this to say that urethritis can absolutely be caused by infection, but nothing will necessarily show up in your urine culture.
                  Last edited by Pipkin; 03-08-2011, 08:40 AM.

                  Onset of symptoms: June 2010
                  Initial symptoms: No frequency or urgency, only pain! pain!! pain!!!
                  Diagnosis: September 2010
                  Current status: Fabulous. I'm feeling 90% of normal.

                  Current Treatment

                  Gluten-free diet
                  TUMS and Prelief with acidic foods
                  Alkalinizing drops with acidic drinks
                  Elmiron for replenishment of the bladder lining
                  Dom-Oxybutynin for bladder spasm


                  Past Treatment

                  URACYST instillations monthly - really helped but had recurrent bladder infections because of the catheterization

                  Comment


                  • #10
                    I should also share that my first doctor was the worst. I kept showing up in her office complaining of horrible urethral burning that NEVER went away, I wasn't able to sleep, I wasn't able to sit, it was utter misery. The suffering was terrible and it went on for at least two months. She refused to send me to a specialist and I could tell she was starting to think of me as a whiney, troublesome patient. I did not deserve this, and you don't either.

                    I found myself another doctor ASAP who believed me, and I got in to see a uro quickly who then diagnosed me with urethritis. I'm still with these two doctors and they help me tremendously. My IC is under really good control these days. I'm pain free most of the time and I can wear my skinny jeans. Life is good again and it will be for you too, but you just need to find the people who can help you. If one doctor dismisses you, keep trying until you find one that believes you.
                    Last edited by Pipkin; 03-08-2011, 03:49 PM.

                    Onset of symptoms: June 2010
                    Initial symptoms: No frequency or urgency, only pain! pain!! pain!!!
                    Diagnosis: September 2010
                    Current status: Fabulous. I'm feeling 90% of normal.

                    Current Treatment

                    Gluten-free diet
                    TUMS and Prelief with acidic foods
                    Alkalinizing drops with acidic drinks
                    Elmiron for replenishment of the bladder lining
                    Dom-Oxybutynin for bladder spasm


                    Past Treatment

                    URACYST instillations monthly - really helped but had recurrent bladder infections because of the catheterization

                    Comment


                    • #11
                      Pipkin,
                      My IC started after I had an untreated pelvic infection after a hysterectomy. I remember saying "this can't be good." Even after all the antibiotics I felt something was still wrong. One day I put in metrogel and my abdomen was in crazy pain, then I felt it went "into" my bladder - from my pelvic pain. I have had IC ever since and it just gets worse.

                      My question is what helped you with your IC? Did the antibiotics help your urethritis?
                      Teresa

                      We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                      Comment


                      • #12
                        Hi Teresa,

                        Funny you ask...I just posted what has worked for me on a different thread.

                        Re: urethritis
                        My uro prescribed Ciprofloxacin 500 mg twice a day for 3 weeks. I responded pretty quickly - in that I started to feel better - but my urethritis was so bad at that point that it took around 2 weeks to really start feeling close to normal again. At it's worst I couldn't wear underwear in bed and had to sleep (or at least attempt to) with my legs spread. Sitting? Wearing clothes? Unbearable. After two weeks on antibiotics I could sleep on my side with my legs together, and it was a joyous day when I could sit with my legs crossed again. Things started to go bad again when I got my period and all the pain started to come back even while I was on antibiotics. My uro figured it could be IC since IC is affected by hormones and sadly, he was right. That was back in September.

                        Since then I've learned the following things on my IC journey.
                        * For me, it is not OK to cheat on the IC diet. Ever. Every cheat set my bladder lining back and I had to follow the diet super-strictly for a few weeks to a month just to get back what I lost with one cheat.
                        * I think Aloe Vera is starting to work for me. I think it works better if I take it with calcium. I've also been taking it for over 3 months and only now am I starting to feel I'm getting better. The key message here is PATIENCE.
                        * I buffer my urine with calcium, and I feel this helps immensely. My urethral burning is almost always tied to the pH of my urine. You can find the protocol here.
                        http://curezone.com/blogs/f.asp?f=1421

                        Hopefully there is something helpful to you in all this.
                        Last edited by Pipkin; 03-08-2011, 04:47 PM.

                        Onset of symptoms: June 2010
                        Initial symptoms: No frequency or urgency, only pain! pain!! pain!!!
                        Diagnosis: September 2010
                        Current status: Fabulous. I'm feeling 90% of normal.

                        Current Treatment

                        Gluten-free diet
                        TUMS and Prelief with acidic foods
                        Alkalinizing drops with acidic drinks
                        Elmiron for replenishment of the bladder lining
                        Dom-Oxybutynin for bladder spasm


                        Past Treatment

                        URACYST instillations monthly - really helped but had recurrent bladder infections because of the catheterization

                        Comment


                        • #13
                          Originally posted by Pipkin View Post
                          .
                          * I buffer my urine with calcium, and I feel this helps immensely. My urethral burning is almost always tied to the pH of my urine. You can find the protocol here.
                          http://curezone.com/blogs/f.asp?f=1421

                          Hopefully there is something helpful to you in all this.
                          Thanks for posting this. I have been working on my urine ph but can see from the link you gave that I am probably not taking high enough calcium/magnesium. I have a hard time getting it above 6.
                          Cindi


                          Gelnique for frequency/urgency - works great
                          Macrobid after sex
                          Prilosec, continuous birth control pills
                          synthroid .088mg, mucinex-d, restasis

                          Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                          Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                          IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                          AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                          AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                          Great treatment flowchart on page 19 of the pdf

                          Comment

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