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  • Confused...had 1st Uro appt today

    Ok well I went to the URO for the first time today and this man tells me that he doesn't believe that I have IC. The reason being is because he feels that the only way to DX IC is to do a Biop of the bladder. He Laughed when I told him the way the other dr DX me. Which was to put a cath in put saline in my bladder then this med that HURT LIKE HELL. Then he put in the resuce med and all was better. Then I went back the next week and had another instill done. He Laughed I'm glad that he thought is was funny, cause I did not.

    So He wants to run a few test before the Biop cause I looked at him CRAZY when he said that. The first is just a basic blood work and pee test. Then he wants to do this IVP. Which he explains to me is basically putting med in my bladder and then taking an X-ray. And at first he wanted to put in Cath and do it that way and I looked at him CRAZY

    So Now I'm concered.....cause I'm not sure about having a Biop done. That scares me. I really am not sure about this doctor. I told him that I was out of my pain meds...which I am and I was very honest with him about what I have been taking. This man gave me darvacet and he only gave me 5 pills. He gave me just enough for 1 a day until my next appt. I truly wonder if he has ever treated someone with this condition. Also he told me that the Elmeron should have started to give me some relief..."the elmeron is the best thing out there for this and if it is not helping u that much then maybe u truly don't have IC"

    If anyone has any thoughts on this Please Please help me I truly need it as I have this appt to see him and get the IVP done on Tuesday. Thanks for listing
    __________________
    Take the moment to enjoy all the little things in your life, for those are the ones we tend to forget!!
    Live your life to YOUR best, and Love to YOUR best!!!



    DX in 03 with Shingles
    Removal of Left ovary due to Cyst in 2005,
    I have had cyst since I started my period as a child age 12
    Hysterecotmy December 06
    IC DX March 07 by PST
    2 "rescue" instills in March 07
    Cyco May 07 confirmed IC
    Uro study June 07
    1st Pain Block July 17,08
    Hydro/Cysto Nov 11, 2008
    12-11-08 was told I had alot of inflamation

    Meds: Allergic to 6 things
    Premarin......taking the gen cause I get it at Walmart for 4$$
    Presique for my drepression :woohoo:
    Abilify for my depression
    Adderall ...found out I'm ADD...makes sense now
    Kolopin for anxiety
    Noroco for my pain
    Valtrex for my shingles as needed

    Sorry if my spelling is off on the meds [/FONT]


    http://community.webshots.com/user/s...host=community

  • #2
    Thanks a bunch. I did feel strange in there with him. I truly felt like he did not care no bedside manner and that when he laughed at how I was DX by the other Doc it just made me feel very small u know.

    I'm going to talk it over with my honey and sleep on it over the weekend!! Thanks for the message.
    Live your life to YOUR best, and Love to YOUR best!!!



    DX in 03 with Shingles
    Removal of Left ovary due to Cyst in 2005,
    I have had cyst since I started my period as a child age 12
    Hysterecotmy December 06
    IC DX March 07 by PST
    2 "rescue" instills in March 07
    Cyco May 07 confirmed IC
    Uro study June 07
    1st Pain Block July 17,08
    Hydro/Cysto Nov 11, 2008
    12-11-08 was told I had alot of inflamation

    Meds: Allergic to 6 things
    Premarin......taking the gen cause I get it at Walmart for 4$$
    Presique for my drepression :woohoo:
    Abilify for my depression
    Adderall ...found out I'm ADD...makes sense now
    Kolopin for anxiety
    Noroco for my pain
    Valtrex for my shingles as needed

    Sorry if my spelling is off on the meds [/FONT]


    http://community.webshots.com/user/s...host=community

    Comment


    • #3
      Is there a different urologist you can see for an opinion before you decide what you will do?

      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


      • #4
        I hope you get a different doctor. I'm very frustrated just reading what he said to you. He's dead wrong and his ignorance is causing you to suffer. Please seek help somewhere else.
        http://www.TheCraftyEwe.etsy.com

        Comment


        • #5
          Your uro does not sound very sympathetic or understanding. My uro made me feel that way also.. he kept saying "I know your other doctors are sure you have IC, but I'm not.. so I'm going to do all these other tests on you" I made the appointment to see him again, and then a few days later I had an appointment with a ob/gyn who specializes in IC and he said that it was definitely up to me, but if I was uncomfortable than not to go (I told him how comfortable I was). I canceled that appointment with the uro. So now I do not see that doctor any more and only see my ob/gyn. He's new to fredericksburg, but when he lived in Richmond he actually had an IC clinic where you could go in for rescue instillations whenever you needed them. He wants to open up one here too.. although I think I'm his only IC patient at the moment! He just came to fredericksburg 3 months ago.

          Anyway, all I'm saying is that if you aren't comfortable with this Doctor, and you aren't confident that he is doing what is best for YOU.. then don't see him. There are plenty of other uro's out there and you will find one that is best for you. If you have been DXed with IC, and feel that he wants to do a lot of expensive tests that are only going to confirm what has already be DXed.. then don't get the tests done. No one can make you do it. And I recommend you see a doctor who understands the pain you are in and doesn't laugh at you when you explain things.

          Oh and Elmiron does NOT work for every IC patient. I am trying to, but I have only been on it for a few days. A lot of ICers on here have tried Elmiron, for more than a year!, and it has not worked for them. Not every patient is the same.. and that doctor doesn't seem to understand that. Elmiron's success rate isn't that high, it's actually pretty low for an FDA approved drug. It's definitely worth trying - but don't let him feel like you are wrong because it doesn't work for you.

          Good luck Stac! I hope all goes well for you!!
          I am Jenny.
          "Karma is affiliated with the Neopagan law of return or Threefold Law, the idea that the beneficial or harmful effects one has on the world will return to oneself."

          Dx:
          -UTI's and Kidney infections: Since 6 months of age
          -HPV: November 2005
          -Advance high-grade pre-cancer cells found in cervix: January 2006
          -LEEP procedure: January 2006
          -IC: January 2007

          Medications (Began Treatment 3/27/07):
          -Elmiron 100mg 3 x per day
          -Elavil 25 mg
          -Hydroxyzine HCL 10mg
          -Sanctura 20 mg 2 X per day (added 07/24/07)

          Weekly Instillations @ Doctor (Starting 07/31/07 instillations will be performed by self at home - Wish me luck!)
          -20cc Lidocaine 2% Plain
          -2cc Sodium Bicarbonate 8.4%
          -1cc Heparin (10,000 units/cc)

          Comment


          • #6
            Hi.
            First off, an IVP is a test to check for kidney troubles ( usually reflux). I dont get why he is ordering that test unless you have had a ton of infections in a row. It will show nothing as far as IC is concerned.
            You do not need a bladder biopsy to diagnose IC. I was diagnosed just by a regular cystoscopy. This guy sounds alot like the first urologist I saw. He told me there was no such disease as IC and that only women over 50 got this type of bladder disease.
            When he laughed at you, I would have asked him what he thought was so funny? It sounds like he has a big EGO issue. I would look for another doctor. The test he is wanting you to do does not make sense at all, unless of course you are having alot of bladder or kidnsy infections lately, and I mean like one right after another.
            He seems ignorant about IC though. I bet he does not treat many or any IC patients as I dont see who would stay with that guy with his attitiude.
            I would call him and ask why he want you to do a IVP, what his reasons are before you go through any of that.
            Goos luck hon, and believe me, you are not alone, I am sure many if not all of us have run into ignorant doctors before.
            Jen

            Comment


            • #7
              Oh, I forgot to add, Elmiron does not work for everyone with IC. I dont know where he got his info from.
              Jen

              Comment


              • #8
                Run screaming in the opposite direction from this doctor, is my advice. First, you've had a potassium sensitivity test; that's considered diagnostic for IC, so you shouldn't need all these other expensive and invasive procedures he's suggesting. Second, Elmiron only works for about 37% of IC patients according to most studies, and when it does work, it can take up to six months to make any difference. And last but definitely not least, any doctor who laughs at you is treating you with blatant disrespect, and you deserve better.

                It really sounds like he doesn't know much about IC, and that he also doesn't believe his patients need to be accorded basic human dignity. This is not a good match for you; trust your instincts.
                Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                Wishing you happiness and good health, and all the best out of life.

                Peace, Carolyn
                ___________________________________________________

                Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                On the Beach with IC

                Comment


                • #9
                  If you are not comforatable with him then maybe find another one? You need a doc who you can count on and not worry when some kind of test is being done. I had the IV MRI test done. They put something in the IV that when it goes through your body and hits the bladder you have that sudden extra feeling of having to pee. I had the biopsy done as well. I never had the potassium test but did have the one where they fill your bladder with water and then wait for you to tell them when you have to pee and then you pee it out in a container to measure. With my Uro I always felt safe at the hospital. He always faught with the nurses for me if need be.

                  Comment


                  • #10
                    First let me start out by saying THANK U to each of u I feel much better now I'm glad that by telling u my story that it didn't sound to you guys. Because I honestly felt like he just did not care what so ever u know. I'm going to try to do some research on the computer and see if I can find an IC doc near me. I have heard of one.......from another ICer but he is REAL far for me.

                    But I want to say THANK U again for all the support.
                    Live your life to YOUR best, and Love to YOUR best!!!



                    DX in 03 with Shingles
                    Removal of Left ovary due to Cyst in 2005,
                    I have had cyst since I started my period as a child age 12
                    Hysterecotmy December 06
                    IC DX March 07 by PST
                    2 "rescue" instills in March 07
                    Cyco May 07 confirmed IC
                    Uro study June 07
                    1st Pain Block July 17,08
                    Hydro/Cysto Nov 11, 2008
                    12-11-08 was told I had alot of inflamation

                    Meds: Allergic to 6 things
                    Premarin......taking the gen cause I get it at Walmart for 4$$
                    Presique for my drepression :woohoo:
                    Abilify for my depression
                    Adderall ...found out I'm ADD...makes sense now
                    Kolopin for anxiety
                    Noroco for my pain
                    Valtrex for my shingles as needed

                    Sorry if my spelling is off on the meds [/FONT]


                    http://community.webshots.com/user/s...host=community

                    Comment


                    • #11
                      unsympathetic doctor? go figure.

                      Hello there, I just wanted to send you all of the love and support that I could. I have a very tender spot for unsympathetic doctor's cuz well it took me well over 10 years for just ONE to get it right. But when I found her, she looked at me, and instantly put me on her schedule to do a hydrodistention/cystoscopy (the current best and official way to diagnose I.C.) She also did a biopsy while doing that. I was diagnosed immediately and the first things she told my mother after realizing I could handle no more that 250cc's of urine?? "My, please listen to your daughter when she has to go, because well, she really has to go"... It was a godsend to meet someone who took me seriously, and who knew without even testing what she was dealing with. Unless you feel this good about your doctor.. always.. always.. get another opinion... or... if one specialist can't help... find a different specialist. I had no idea all these years it was a bladder problem.( I didn't even realize i was peeing over 80 times a day believe it or not).. so until i went to see the urologist and not the neurologist, or gynecologist, or nephrologist, I was left time after time again, with no answers and just more questions. Please don't give up, go to a sight that does doctor referrals by specialty. Don't give up and don't ever let them make you think it's in your head, or even worse.. hypochondria. God knows I let them tell me that far too long, and gone through far too many quacks to know.. that only YOU are your best advocate, and only YOU are ultimately responsible and "qualified" enough in asking and fulfilling all those questions as to, why you feel this way. P.L.U.R.
                      Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                      Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                      Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

                      Comment


                      • #12
                        Thank u so much. I have put a lot of thought into it and did not go to the apointment today. I'm going to get in with my gyno tomorrow and see if she can referr me to someone, if not then I will just try and find a place myself. Thanks for everything!!
                        Live your life to YOUR best, and Love to YOUR best!!!



                        DX in 03 with Shingles
                        Removal of Left ovary due to Cyst in 2005,
                        I have had cyst since I started my period as a child age 12
                        Hysterecotmy December 06
                        IC DX March 07 by PST
                        2 "rescue" instills in March 07
                        Cyco May 07 confirmed IC
                        Uro study June 07
                        1st Pain Block July 17,08
                        Hydro/Cysto Nov 11, 2008
                        12-11-08 was told I had alot of inflamation

                        Meds: Allergic to 6 things
                        Premarin......taking the gen cause I get it at Walmart for 4$$
                        Presique for my drepression :woohoo:
                        Abilify for my depression
                        Adderall ...found out I'm ADD...makes sense now
                        Kolopin for anxiety
                        Noroco for my pain
                        Valtrex for my shingles as needed

                        Sorry if my spelling is off on the meds [/FONT]


                        http://community.webshots.com/user/s...host=community

                        Comment


                        • #13
                          Good idea... glad you did not go back to that doctor. He obviously is not up on the latest research in the IC world; if he had been, he'd have known you had the potassium sensitivity test already and that it was positive, meaning you have IC.

                          Keep looking... sometimes it takes a while, but there will be a good doc out there somewhere for you!!
                          ****
                          Jen

                          *Diagnosed with severe IC in 2004
                          *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                          *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                          *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                          **I am not a medical authority nor do I offer definitive medical advice. 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.

                          Comment


                          • #14
                            Well my 1st GYN DR. is not the one that gave me the DX. I went to this other dr cause my gyn had no clue what else to do for me. So the guy that I got DX from was a gyn and yes he did RX my IC meds.

                            I'm going to ask my 1st gyn, due to the fact that the 2nd gyn won't see me anymore.....i owe him money now since the instill's, if she will rx my ic meds for me and also my pain meds. She has been giving me pain meds for my female problems for years so it doesn't hurt to ask. But if she says no, then I have a back up plan....I'm going to ask her to refer me to a pain clinic.

                            I have my appt tomorrow so I hope all goes well
                            Live your life to YOUR best, and Love to YOUR best!!!



                            DX in 03 with Shingles
                            Removal of Left ovary due to Cyst in 2005,
                            I have had cyst since I started my period as a child age 12
                            Hysterecotmy December 06
                            IC DX March 07 by PST
                            2 "rescue" instills in March 07
                            Cyco May 07 confirmed IC
                            Uro study June 07
                            1st Pain Block July 17,08
                            Hydro/Cysto Nov 11, 2008
                            12-11-08 was told I had alot of inflamation

                            Meds: Allergic to 6 things
                            Premarin......taking the gen cause I get it at Walmart for 4$$
                            Presique for my drepression :woohoo:
                            Abilify for my depression
                            Adderall ...found out I'm ADD...makes sense now
                            Kolopin for anxiety
                            Noroco for my pain
                            Valtrex for my shingles as needed

                            Sorry if my spelling is off on the meds [/FONT]


                            http://community.webshots.com/user/s...host=community

                            Comment


                            • #15
                              yay!

                              Your gyno may be very sensitive to the issue and help you out much with a referral. .. I know mine always has been. She was my best advocate for quite some time, and she was always finding abnormalities in my testing(Urine,pap particularly, and even biopsies) until I finally got treated for I.C! If you have a mere cavity those test will show it and come back abnormal. So that is a great place to start. Indeed that is so good to hear! You sure sound more optimistic now and we can hope for nothing better! Best wishes and warmest regards!
                              Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                              Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                              Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

                              Comment

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