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  • Need advice from the Moderators or anyone else that has info.

    I went to my GP today which I have only seen twice since I have moved. So she is new to me..She treats me for high blood pressure. She came in and ask how I was and I said the blood pressure is doing good since I got off the Elavil and I am loosing weight, but the IC pain gets really bad sometimes..OH I opened up a big can of worms with her then.. She said let me tell you something about IC.. Its a womens disease thats all in your head!!! Dom could see my eyes start to bulge.. I hear of people on here saying doctors tell them this but to hear them words come out of their mouths just floored me!!! I said well there is proof it exsist just by the hydro/cysto.. She said you can take any womans bladder and extend it and it will show pinpoint bleeding, well I started to argue with her, which of course didnt do any good..

    She felt my abdomen and said where I am having the "IC" pain if it excisted is way to high.. I have it right below my belly button going all the way down to my pelvic area.. Where is most of you alls IC pain located and do any of you have any kind of documentation I can print out to show her?..Oh and yes I am finding a new GP But I still want to prove my point. She thinks I need all kinds of test like a MRI and a CAT scan, because of the pain being so high..Any thoughts on this?

    Thanks so much Ronda
    Last edited by leelee88; 06-21-2007, 02:16 PM.
    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.

  • #2
    OMG I hate doctors like that.. you can google ic, and ic and ssd. you will have proof. thats just wrong.
    'The will of God will never take you where the Grace of God will not protect you.'

    Comment


    • #3
      women

      Just because your doctor is a woman sure didnt keep her from being a big jerk. Sorry she was so nasty, however her remark on distending any bladder and it will cause pin point bleeding is accurate. I have read the studies on this and its true. It probably wont bleed like an IC bladder, or show chronic inflammation and other markers of IC, but it will bleed.
      LeLe have you ever been evaluated for pelvic floor disorder? As hard to believe as it is, many times what we think is bladder pain is actually coming from the spasm and referred pain of the pelvic floor?
      If it were me, I would probably go along with the scans to rule out any other problems, but the pain from the nerves can and do cause pain higher up than the bladder.
      Hope you get another doctor. As for IC being in your head the diagnosis of it is rising, not falling and the criteria for what is IC is enlarging to include even an overactive bladder. So, a awful lot of women are having symptoms all in their heads if thats the case.
      Sammi

      Sammi

      Meds: Melatonin 3mg @ bedtime if needed. Estrogen 1.5 mg troche and 0.1 mg Estrace cream.
      Diagnosis: IC, PFD (both in remission)

      Comment


      • #4
        SO SORRY - WHAT an idoit!!!!!!! She obviously had no clue what IC is and how painful it is!!!!!!!! My OB thought that I was crazy in the beginning with this whole thing. I was going into his office like every other day holding my stomach in awful pain and it made me cry when he said there was nothing wrong. I was crying every night from the pain. I knew something was wrong and he wasn't getting it. It was horrible. I've thought many times that I should write him a letter letting him know my diagnosis.
        My uro knows about the level of pain and has prescribed me vicotin and MS Contin without giving me a hard time. I have read that people with IC rate their quality of living lower than people in end stage kidney dialisis. I wish I could advise you on materials to print so you can prove her wrong.
        My pain is often a 10 on the scale. I don't know where I would be without pain killers. You are definitely right to drop her.

        Comment


        • #5
          You need to get a voo doo doll LMAO.............. Run don't stop to the nearest newest GP

          Comment


          • #6
            Yea I really was shocked!!!!
            I mean she just kept on and on. And the funny thing is my URO is the one who referred her..Which he aint to bright himself but at least he does believe in IC, he just does not know how to treat it once he diagnoses it...lol

            Speaking of VOODOO Dolls, Hummm I wonder if someone has one of me and keeps poking the crap out me...<<Thats just a joke we all know that VOODOO dolls are not real.. OR do we?..lol
            See pain can makes us nuts..
            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


            • #7
              The only advice I can think of is to find a different doctor. We recently had to change primary care physicians and one of my first questions was to ask him what he does if he gets a patient with IC. He told me that he knows so little about IC that what he does is to refer IC patients to a urology group.

              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
                To be honest with you, I just want to cry when I hear crap like this, (sorry about the way I wrote this but this is how I feel).

                All these years no one could find out what was wrong with my bladder and now low behold the bladder won't stretch, beyond repair. Just think if someone would have listen to me and took me seriously. Maybe you should ask her why then are some people losing their bladder because of it? Why then are doctors taking the bladder out?

                Again sorry what I am about to write, but yes some of it is in my head, because I have to put up with all of your crap.

                Ronda maybe your pain is due to something else or maybe it is not. I would let her take those test just to make sure. But when it comes to IC this lady is a joke and rude.

                Take care, Trishann

                Comment


                • #9
                  I wouldn't waste my time trying to convince her. I'd just move on to a different doctor & never mention her name or what happened to any other doctor. It's not worth the potential backlash. Occasionally I encounter something similar. It's maddening, but doctors like that generally don't believe their patients & all you will do is waste money on copays & she'll write you up in your medical records as obsessed or worse.

                  What you might want to do is call the ICA and have them send an information packet to the doctor. She's more likely to believe a professional association formed by a doctor than us.

                  So sorry that happened! I hate situations like that.
                  Kadi

                  -------------------------------------------------------------
                  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.
                  ------------------------------------------------------


                  New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                  Source - Pinterest
                  "


                  Current treatments:
                  -IC diet
                  -Elavil 50mg at night
                  -Continuous use birth control pills (4-5 periods/year)
                  -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                  -Pyridium if needed,
                  -Pain medicine at bedtime daily, as needed during the day several times per week
                  -Antibiotic when doing an instillation to prevent UTI
                  -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                  -Dye Free Benadryl 50 mg at bedtime
                  -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                  -Managing stress= VERY important!
                  -Fur therapy: Hugging the cat!

                  Comment


                  • #10
                    Hi Rhonda - I am so sorry that you had such a bad experience with your doctor. Why would so many women and men subject themselves to tons of doctors visits, uncomfortable tests (like cystoscopy, pelvic ultrasound, etc) and medications with undesireable side effects if our pain was not real!! That doctor makes me very angry. It is quite obvious to me that people can have painful bladder conditions that can not be cured by antibiotics or attributed to some other known cause (like cancer). In my case I had visible blood in my urine and bladder inflamation (seen with cystosopy) but no bacteria growth in my cultures and no other cause for my symptoms could be identified through many tests. But even if I did not have visible blood and inflamation, I believe that I still would have/should have been given an IC diagnosis based soley on my symptoms of pain/freq and given treatment to relieve the pain. Sorry for rambling but that doctor makes me angry...Keeping you in my thoughts...Linda

                    PS I had a cat scan (also had pelvic ultrasound, in-office cystoscopy, diabetes test) to rule out other causes so if you have not had tests like that done you might want to consider - It is good to rule out all other possible causes for the pain.
                    Sudden onset of UTI like symtoms on Dec 27, 2006.
                    Diagnosed with IC on March 12, 2007.
                    Current Meds: 50mg Elavil
                    "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

                    Comment


                    • #11
                      Hmmm. All in our heads? I have seen somewhere around her pictures of IC bladders and normal bladders and I'm no doctor but they DO NOT look the same.

                      I wonder how she thinks cats get IC in their heads.

                      Comment


                      • #12
                        Doc is Ignorant, but Agree and Disagree

                        You know you have IC and this doctor's attitude will not change, so don't waste your energy. I don't agree with her saying IC is in your head -- she needs to keep up on her continuing education because even GPs are being informed of IC by the medical community. I agree with what she said on hydros. In 2001, a famous IC doc at the University of Maryland said the basically the same thing to me. There is no way to accurately diagnosis IC at this point. He was trying to recruit for a clinical trial to see how normal women's bladders looked during hydros, but volunteers were hard to come by. I am not sure what happened to his trial.

                        Before you fire her, if you haven't had an MRI, I would let her order one. (Make sure you get a copy of the films and the radiologists report for your future medical care reference. You have a right to one copy of the films without charge.) I think that should be part of ruling out any other conditions other than IC. It should have been one of the first tests your docs did in the beginning. The only thing an MRI can hurt is your wallet from the medical bill and it may give you a small clue to the state of your health.

                        Best wishes,
                        ads

                        Comment


                        • #13
                          Thanks for all the advice
                          Just to let the ones know, that might not know me.. I did have a cysto/hydro in 2006 with a cofirmed case of IC, but in the process I had my bladder rupture<which is very very rare, but anyways my URO never did a follow up CAT SCAN.. He only did one test to make sure the bladder had sealed but never anything else, so I am going to have the CAT SCAN done just to clear my mind..

                          Trish, I know what you mean about if doctors would have acknowledge your IC earlier that you might have been able to do something for your bladder.. I cant imagine having to go through what I went through today again with another doctor. My heart goes out to you..

                          Kadi, You make a great point its is best to be done with her because she couls screw my file up and say I was a drug seeker or something like that.. Thanks for the heads up on that..
                          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


                          • #14
                            If you wanted to provide her with information I'd lean towards info about the potassium sensitivity testing - where the patients WITH IC have pain and the ones without it do not.

                            http://www.ic-network.com/askthemd/kahn1103.html

                            Then I'd find info about the urine marker research they'd been doing that shows the antiproliferative factor in the urine of 95% of ICers.

                            http://www.ic-network.com/forum/arch...hp/t-8848.html
                            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


                            • #15
                              Thanks Kim....

                              You know the more I think of it the madder I get...I just can not believe that doctors are still trying to say its all in your head when there is so much proff out there..People like her should not even be in practice! Like I said I am having the MRI because I am having pain that is higher than my IC pain. But thats just for me..But if there is something there I will take the results to another doctor who believes in IC..
                              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

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