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Had PUF/PST to dx IC....New URO wants Cysto...Is it necessary?

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  • Had PUF/PST to dx IC....New URO wants Cysto...Is it necessary?

    Hi
    I went to the only Uroligist in town that would see me after finding out I have IC. My Gyn dx me with the PUF questionaire and the Potassium Senstivity test ayear ago. I've been taking all the usual meds and watching my diet. I would say things have improved somewhat but pain still persists at times. It was getting harder and harder to get my Gyn to prescripe pain meds. I decided to try this URO.

    He was very off-putting to say the least. He feels that I might not have IC because according to him the PST is worth nothing. He also told me that Urologist don't want to treat IC patients because why would they ask to have patients who are grumpy and complain about pain all the time. His theory on IC is that it is systemic(I think that is the right word he used) When I asked what that meant he made me feel like an idiot for not knowing. He said that he believed that IC has nothing to do with bladder other then the pain is felt there. That the bladder itself does not have a problem. I didn't follow him at all.

    He expressed his irratiation with the ICN and the patients with IC causing a fit about changing the name of IC to PBS. I told him I was one of those patients who took the survey. He didn't seem to like that so for the remainder of the visit he refered to it as PBS.

    He did seem to understand the pain problem with IC as he spoke of it being a problem that affects the whole family. He said that all the meds I have been on for the last year is a waste since he feels we don't know if I really have IC. He wants to do a cysto/hydro/biopsy. After that he would be able to determine if I ...1.definately have PBS 2. maybe have PBS 3. don't have PBS. His words of course.

    I asked so what would be the next course after that surgery if it is found I have IC. He said then he could treat me with the meds I am currectly on. I tried to discuss bladder cocktails with him but he said that he doesn't know if I have PBS so there was no need to talk about that yet.

    He asked very indepth questions about sex. And made such an issue about it. To me that is the last thing I am worried about at this point. I don't think a Dr needs to go that route unless a patient does first. Seemed male showvenistic (sp?)

    He then had me undress for the worst exam I've ever had. He was so blunt when he talked. I start to explain I was on my period and wanted to know if I should remove my tampon. He said "If you don't then I'll yank it out" For the exam which I guess I was naive to know better, he felt up my vagina and then did an anal insertion as well. All the while pushing with his other hand on my pelvis. I am crying at this point. He told me that wasn't painful. That I was just nervous. I told him in no uncertain terms it did hurt. Now a day later I am still tender and my bottom hurts from how far he stuck his finger in there. Is this a normal uro exam?

    After I got dressed from the lovely exam he told me to get scheduled for the surgery and sign consent forms. I told him that I would like to think about it first and read up on it. He says "that's fine, your a big girl, you got your big girl panties on don't you?" If you think your big enough to wear big girl panties then you go right ahead and do your reading up it and then call when your ready" I think by this time my mouth is hanging open as never would expect a Dr to speak to me this way.

    Besides that fact that this man has no respect for a patient was he right in the next course of action? I didn't think that a surgery was needed. I already know I have IC according to the PUF/PST. To me, having it just puts money in his pocket but doesn't help me in any real way. It won't change my course of action for treatment. I fear it could make things worse by going in and messing around with an already sensitive bladder. Can I hear the pros and cons on having this procedure done now? Thoughts and adivce gratefully accepted.
    ~Laura

    There can not be a crisis next week. My schedule is already full.

    March 2006 IC tested positive

    current treatments for IC:
    Zoloft 100mg
    Prelief
    tramadol hcl 50mg (4-8 per day)
    diphenhydramine (1 nightly)
    elavil 25mg, Just started Nov 11

    additional meds for pain if needed:
    darvacet
    loratab
    percocet
    tried Elmiron for over year and didn't see much of a change, gained weight

    Also take Lisinolpril for high blood pressure

    Other conditions:
    IBS '93
    depression '94
    stomach ulcers '95
    Mitral Valve Prolaspe Syndrome '01
    Migraines since childhood
    Chronic Fatique '03


    It's not the number of years in your life that matter but rather the life in your years.

  • #2
    First of all Laura, let me tell you that this uro sounds like a real jerk. I have never had a dr talk to me like that and I know I wouldn't go back. I was also diagnoised w/ IC by my gyn w/ the PST. She basically put me on elmiron and sent me on my way. When I wasn't feeling any better I found a uro who worked w/ IC patients and made an appt. My uro also told me that the PST doesn't really prove that you have IC. He said that people that don't have IC might have a positive result to the test and people that do have IC might not have a positive result. He already did an in office cytsocopy for me a month ago and agreed that I had areas of chronic inflammation but still feels like he can't say I have IC for sure until he does the hydro/cysto/biopsy.
    Unlike this horrible doctor that you saw though my uro is very caring and I totally trust him to do the surgery. He can then see how much bladder holds, confirm the IC and see how bad it is. I was lucky and got my scheduled very quicky, saw him yesterday and have my surgery on Wednesday. I'll be posting how it goes if you're interested.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment


    • #3
      Wow... My mouth has dropped... I cant believe what an azzhole he was being..Oh I dont know about others but my URO would never have examined me if I was on my period and come to think of it . He has never examined me like that..If I was you I would find another URO.. I didnt even have the examine and I am mad with him for treating you like that, It was just wrong!!
      God Bless You.. and I hope you find someone else....
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we 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


      • #4
        Originally posted by leelee88 View Post
        Wow... My mouth has dropped... I cant believe what an azzhole he was being..Oh I dont know about others but my URO would never have examined me if I was on my period and come to think of it . He has never examined me like that..If I was you I would find another URO.. I didnt even have the examine and I am mad with him for treating you like that, It was just wrong!!
        God Bless You.. and I hope you find someone else....
        So that sort of exam is not common? I truly didn't know what to expect with it being my first visit to any Uro. He was last hope for one in town that my insurance would cover. I called everyone! They all said no when I said I had IC.

        I've been reading about the cysto here and I am understanding the benefits for it. I just can't see me going back to him. If you know what I mean.
        ~Laura

        There can not be a crisis next week. My schedule is already full.

        March 2006 IC tested positive

        current treatments for IC:
        Zoloft 100mg
        Prelief
        tramadol hcl 50mg (4-8 per day)
        diphenhydramine (1 nightly)
        elavil 25mg, Just started Nov 11

        additional meds for pain if needed:
        darvacet
        loratab
        percocet
        tried Elmiron for over year and didn't see much of a change, gained weight

        Also take Lisinolpril for high blood pressure

        Other conditions:
        IBS '93
        depression '94
        stomach ulcers '95
        Mitral Valve Prolaspe Syndrome '01
        Migraines since childhood
        Chronic Fatique '03


        It's not the number of years in your life that matter but rather the life in your years.

        Comment


        • #5
          I would be stunned if anybody spoke to me that way, but in particular someone I was paying.

          IMHO, you've already had a definitive diagnosis of IC. You don't need to have an expensive, invasive, and potentially painful procedure.

          Can you look a little further afield for another uro? Or a urogynecologist? I travel 70 miles each way to mine, which is not comfortable for me, but well worth it for both his kindness and his expertise. Once we got started on the instills, he had my husband and me trained to do them at home, so I really don't have to make the trip that often.

          I strongly advise you NEVER to see this doctor again; the treatment you were subjected to borders on abuse. Trust your instincts. I know you said you have called everyone else in town. Maybe ask your gyn for a referral to a pain clinic? You don't need diagnostic procedures at this point, you just need management of your symptoms. That's what pain clinics are for.

          Oh, I feel so bad for you! If I were in your position I would be outraged; in fact I am rapidly becoming outraged on your behalf! Remember, just because he's a doctor doesn't mean he knows everything, and it certainly doesn't give him the right to treat you so disrespectfully. You deserve better, and you will find better. Meanwhile, the less you think about this poor excuse for a human being, the better. Stress is bad for us as we all know, so please do something nice for yourself very soon. You deserve a treat after that nightmare.

          You are in my thoughts.
          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


          • #6
            Carolyn,
            Thank you very much for the support. I did feel abused and my body feels it today too.

            I was thinking along what you said about I have already been diagnoised. I don't doubt that I have IC in the least. If I did doubt it I would be more willing for the surgery. I can tell I have IC if I eat the wrong thing. I was looking for a dr to treatment of my symptoms. I highly doubt that my insurance will cover another diagnosis procedure for the same condition. I did once ask my gyn for a referal to a pain dr but got kinda brushed off. I think I have enough pain meds till my next visit with her.

            Thanks again for your reply. It helps so much to hear views from those with this condition.
            ~Laura

            There can not be a crisis next week. My schedule is already full.

            March 2006 IC tested positive

            current treatments for IC:
            Zoloft 100mg
            Prelief
            tramadol hcl 50mg (4-8 per day)
            diphenhydramine (1 nightly)
            elavil 25mg, Just started Nov 11

            additional meds for pain if needed:
            darvacet
            loratab
            percocet
            tried Elmiron for over year and didn't see much of a change, gained weight

            Also take Lisinolpril for high blood pressure

            Other conditions:
            IBS '93
            depression '94
            stomach ulcers '95
            Mitral Valve Prolaspe Syndrome '01
            Migraines since childhood
            Chronic Fatique '03


            It's not the number of years in your life that matter but rather the life in your years.

            Comment


            • #7
              I very rarely advise anyone to change doctors, but in this case, I can't think of any other alternative. There has to be another doctor you can consult. If not, then I suggest you go back to your original doctor and ask for a referral to a pain specialist.

              The behavior and language you stated came from a physician are what I would call unprofessional to say the least.

              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


              • #8
                It sounds to me like you were molested. There aren't words for how wrong that was. I'm so sorry.
                http://www.TheCraftyEwe.etsy.com

                Comment


                • #9
                  I am honestly horrified by the way he treated you. He was very out of line in many ways. I am so sorry you were treated that way.

                  Was his nurse in the room when he did his exam????? My uro NEVER did a pelvic exam on me. In fact, the only time he saw my privates uncovered was when he did my cysto w/ hydro. I would most definitely tell your GYN how you were treated - other docs in town should know.

                  That's too bad he has such a low opinion of the ICN. And to say that about doctors not wanting to work with IC patients.... Then WHY on EARTH is he seeing them?????? He could do all us ICers a favor and not accept us as patients b/c we sure as *you know what* don't want to waste our time with doctors like that.
                  Kim

                  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

                  Comment


                  • #10
                    Like the others, I had to pick my jaw up off the floor before I could type! I cannot believe that treatment you endured! Like the others, I have been to some bad Drs, but I have NEVER been treated as badly as you just were!

                    I believe you should report this to someone somewhere. I have never advised anyone to do that, but this time, it is definately called for.

                    Like several other mentioned, I have also never had a uro do an exam like that. I am just plain blown away. I also cant get over the roughness and the way he spoke to you. (Did I mention I am stunned?)

                    I hope to God you never go back and that you minimally tell the referring Dr. of your experiance with this one.

                    As for the cysto/hydro, though I will agree that you obviously dont want this jerk doing it, it still could be worth your while to get one done elsewhere for a variety of reasons. First, they do a biopsy to rule out cancer. Yes, it is unlikely, but it is nice to be sure. It can also tell them other things that I am too tired to think of, (but hopefully others will remember). But, just as important, lots of ICers go into months or even years long remission from having a cysto/hydro. Some do them frequently just for pain relief. So, there are lots of things to consider. But, luckily, you will now be finding a new Uro to discuss this with and hopefully, they will have a strong feeling one way or the other on whether or not you should do one.

                    Again, I am so shocked by your experiance, that I am finding it hard to even write to help you b/c I keep thinking about how awful that must have been for you. I hope that you are okay. You might try putting some Lidocaine or even hemmoriod cream on your anus to help with the pain. The hemmorid cream would help reduce any swelling.

                    I hope you feel better soon and get a new Uro who is wonderful.

                    Big hugs,
                    Amy

                    Comment


                    • #11
                      Oh, Laura, this situation is not funny at all, but were you at least able to get a smile out of Amy's suggestion to use hemorrhoid cream? What could be more appropriate for getting over your confrontation with Dr. Pain-in-the-A*s?!

                      Actually, it's a very good idea (not surprising since it came from Amy), and so is the lidocain. You can pick those things up in practically any drug store.

                      Still holding you in my thoughts, Laura. Stay strong.
                      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


                      • #12
                        I am wondering if this doctor is afilliated with a hospital that you could report this too. (He has to do his surgeries somewhere) A Urogyno would want to do the full pelvic to make sure there was no pelvic floor muscle problems, but I can't imagine a regular Uro doing this. Find a urogyno, it will definately worth your while. They only work with women, so they won't turn you away for having IC and they would understand the added discomfort of having a pelvic exam while you have your period. I believe the rewards of going through with a hydro can greatly outweigh the risks, they always put me into remission, and with a definate diagnosis you may be eligible for better treatment options. It makes me sick to think of how you were treated, I'd love to see this guy taken down a few notches.
                        I was born with one ureta not attached to it's kidney, I've been poked and prodded for so long. I never had "private" parts. I had constant infections and took low dose preventive antibiotics into my teens.

                        DX with IC July 1993 after seeing 3 different Uro's and finally switching Primary care doctors and affiliated hospitals.


                        I have 2 beautiful daughters, the oldest has been in heaven since she was 14 when she was hit by a car The youngest is 20 now. She has had one UTI. She went into complete panic that she would end up like me. Now she has some idea of what the pain is like. Poor kid has been forced to know where every bathroom in Disney World is.

                        Comment


                        • #13
                          Originally posted by vm View Post
                          Was his nurse in the room when he did his exam?????
                          Yes, she was an nice older woman, she looked like she felt sorry for me and hurried out of the room the first chance she got.
                          ~Laura

                          There can not be a crisis next week. My schedule is already full.

                          March 2006 IC tested positive

                          current treatments for IC:
                          Zoloft 100mg
                          Prelief
                          tramadol hcl 50mg (4-8 per day)
                          diphenhydramine (1 nightly)
                          elavil 25mg, Just started Nov 11

                          additional meds for pain if needed:
                          darvacet
                          loratab
                          percocet
                          tried Elmiron for over year and didn't see much of a change, gained weight

                          Also take Lisinolpril for high blood pressure

                          Other conditions:
                          IBS '93
                          depression '94
                          stomach ulcers '95
                          Mitral Valve Prolaspe Syndrome '01
                          Migraines since childhood
                          Chronic Fatique '03


                          It's not the number of years in your life that matter but rather the life in your years.

                          Comment


                          • #14
                            Originally posted by ihurttoo View Post
                            I believe you should report this to someone somewhere. I have never advised anyone to do that, but this time, it is definately called for.
                            Gosh Amy I don't think I could go through any sort of reporting. I really just want to forget the whole thing ever occurred.

                            Originally posted by ihurttoo View Post
                            Like several other mentioned, I have also never had a uro do an exam like that..
                            I had meant to come here and ask what sort of exam to expect being this was my first trip to any Uro. I understand the pelvic but not really the rectal. My gyn has done a quick and simple rectal before but nothing like that.

                            Originally posted by ihurttoo View Post
                            that you minimally tell the referring Dr. of your experiance with this one.
                            I do think that I could let my family doctor know that I wouldn't recommend she refer anyone else there.
                            I did start using some hemmoriod cream because that area really needed it. It is now worse then when I had my babies deliveried. I think for the time being I'm just going to stick with my meds that the gyn has prescribed. If things get worse the NP at the gyn said she would do bladder cocktails for me. But I'm not ready look for a different dr right now.

                            The support here does make be feel better in many respects. I thank you all so very much.
                            ~Laura

                            There can not be a crisis next week. My schedule is already full.

                            March 2006 IC tested positive

                            current treatments for IC:
                            Zoloft 100mg
                            Prelief
                            tramadol hcl 50mg (4-8 per day)
                            diphenhydramine (1 nightly)
                            elavil 25mg, Just started Nov 11

                            additional meds for pain if needed:
                            darvacet
                            loratab
                            percocet
                            tried Elmiron for over year and didn't see much of a change, gained weight

                            Also take Lisinolpril for high blood pressure

                            Other conditions:
                            IBS '93
                            depression '94
                            stomach ulcers '95
                            Mitral Valve Prolaspe Syndrome '01
                            Migraines since childhood
                            Chronic Fatique '03


                            It's not the number of years in your life that matter but rather the life in your years.

                            Comment


                            • #15
                              Had PUF/PST

                              Hi,

                              Your urologist sounds awful and unprofessional. I would put on my running shoes and get as far away from him as possible. If you have already been diagosed with IC by way of the PST and PUF test, that should be fine. If your meds need tweaking, I would find another urologist even if I had to travel to see one. Maybe someone on this site can give you a suggestion for a compassionate dr that would not be in your town but not that far away.

                              I had a pelvic exam when I was diagnosed to check for bladder pain felt in the anterior vaginal area and to check for pelvic floor pain. The dr's nurse was there and it was not that painful.

                              Good luck finding a new dr.

                              Kathy

                              Comment

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