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  • Frustration with Uro!

    So annoyed.

    So I went to my uro yesterday for a follow up. I explained how I has been using to oxytrol patch for flares which controlled my frequency until it was over and that it made no difference when I was not flaring. (Frequency down to 6x per day now). I also explained how I have become very diet sensitive this past month with the main symptom being pain not frequency, but the IC diet was helping a lot. I told her I was ordering Cystoprotek and prelief to help with flares and the daily bladder pain. Her response was 'what are they' ?!?!?! are you kidding me. I explained and she shrugged her shoulders, with a smile .

    She was all very airy and nice and everything but really didn't seem to know what to do about my constant daily vulva pain. I told her pt was making it worse she said lidocane, tried that, amitriptelene (sp?) tried that, dilators? yep tried that too. Give me something I don't know. 'well there is nothing more I can really suggest"

    So I suggested the ami compound cream
    the hormone compound cream
    vaginal valium

    'well you could contact a compounding pharmacy but I have no idea about any of these medicatons I have never heard of them'

    How annoying. It's like I will be the first in my area to try these things and it doesn't feel good. I need to be working with a doctor that knows the effects of these and how much to use.

    I took the rx's people had given me on this forum but she wasn't sure what to do with them?!

    and this women treats IC.

    Urgh, waste of time and money.

    By the way does PESTO flare anyone? Damn pasta  I made it myself too.
    TMJ Dysfunction 2009
    Vulvodynia and/or PFD 2010
    IC, based on symptoms alone 2010.
    PCOS March 2012

    8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

    Currently using: IC Diet...pain meds as needed
    Medications / treatment tried and discounted:
    Fluconazole 150mg 1 per week for 6 months (yeast)
    Endep 25mg - 4months
    Lyrica 75mg - 2 months - FLARE
    Oxytrol patch - I think this caused retention.
    Countless creams, lotions and potions.
    Cystoprotek - no change in symptoms
    PT - for 1 year
    Various herbs and supplements

  • #2
    Time for another Uro. It sounds like she may have added that to her resume just because it's a lot more people are getting it and it's a Uro disease.

    If my Uro had never heard of Prelief I would be out of there. All you have to do is google 'IC' and read about 5 pages and you'll know Prelief is used for IC a lot. That's scary. It sounds like she only knows very basic IC coping techniques and anything not in the 'textbook' cases she hasn't a clue about. If she were a general practitioner I would understand her lack of familiarity with various treatments but for a Uro who claims she treats IC is unacceptable.

    I think it's a good thing she wouldn't give you anything because she obviously isn't familiar enough to prescribe something.

    Comment


    • #3
      Tell me about it.... My Gp is better than her. He knows nothing but is willing to prescribe me anything I want to try.

      Ill see how I go on my own, I reckon I am doing ok.

      It's just pathetic all she knows about is instills, endep, oab meds and people with incontinence problems. I was referred to her because she is the only one on the Sunshine Coast that treats IC.

      Well I feel sorry for anyone else suffering in my area that is under her practice, not because she is nasty, shes lovely, but dim....
      TMJ Dysfunction 2009
      Vulvodynia and/or PFD 2010
      IC, based on symptoms alone 2010.
      PCOS March 2012

      8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

      Currently using: IC Diet...pain meds as needed
      Medications / treatment tried and discounted:
      Fluconazole 150mg 1 per week for 6 months (yeast)
      Endep 25mg - 4months
      Lyrica 75mg - 2 months - FLARE
      Oxytrol patch - I think this caused retention.
      Countless creams, lotions and potions.
      Cystoprotek - no change in symptoms
      PT - for 1 year
      Various herbs and supplements

      Comment


      • #4
        Oh boy have I been there with the uros. One uro told me the only prescriptions he wrote for IC were Elmiron, Prosed, or pyridium. When I told a uro/gyno I was seeing that I had tried some Zyrtec because I had no Atarax she said- "An antihistamine? Why on earth would you take an antihistamine for IC?" Another one on my very first visit told me he never did instills, and never prescribed Atarax and that there wasn't much that would help me. ?????What????
        I can't believe how ignorant of this condition a lot of specialists in urology really are. Even some of the young ones. I started to get the impression that a lot of uros just don't want to fool with this as it is unpredictable and takes a lot of time to get patients on a good treatment plan and I think they just don't have the patience. Maybe you should search for a specialist who deals with vulvar pain. I know they're out there. My compounding pharmacy in North Dakota will educate your dr. in what kind of cream would be best for you. He does consulting all the time. I get my estriol cream from him and I know he's familiar with VV. If you want any info on the pharmacy send me a PM.

        Comment


        • #5
          agree

          My uro (so called IC expert) never heard of 'IC belly' (inflammation of abdomen from IC), never knew about vaginal valium until I told her. They probably don't look at any forum like this or the even the ICA site. They may not even keep up to the studies in Uro today. Who knows.
          I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

          Comment


          • #6
            In defense of urologists, most have only a few IC patients --- so we are a very small portion of their practices. A few will spend a lot of time researching IC, most have all they can do to keep up on the latest medications and treatments for ALL urological problems. And there are many over the counter treatments for a lot of problems. If I want to ask my doctor about an over the counter medication, I take the container with me so he can read the contents.

            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


            • #7
              Dear Claire,

              I am so sorry you had such a disappointing appt. That would have bummed me out too. But, I can tell you that Earthlady is indeed on to something. I have a cousin who is a Dr. and I also dated one, prior to getting married. I asked both of them about this phenomenon years ago. BOTH OF THEM told me that when many Drs are faced with a patient who has a condition that they do not want to deal with, then they will simply feign ignorance, acting like they dont know much about it, in a covert attempt to get an undesirable patient to move along to another doctor.

              The reason for this is that most Drs sincerely want to cure people. In many conditions, they can do this by: d/xing a condtion, and either treating the patient with meds or surgery. Then, they can stand back and watch the patient be actually be cured, and have the good feeling of knowing that they were the ones to really help that person. But, with IC there is no cure, and when they are faced with a patient that is symptomatic of it, they already know that more than likeky, a cure just isnt going to happen, ( because there isn't one yet for IC).

              For most other patients that Drs. have, even if they cant cure them, Drs. know that they can at least make that person comfortable by treating the pts symptoms immediately. But, with IC patients we are all different. There is no known formula of meds that works for everyone. So, with us, it is all trial and error.

              Doctors know that IC patients generally are not going to be an easy fix. It often takes years to get them d/xed, due to the fact that they have to eliminate everything else that could be causing trouble too. And when you are dealing with chronic pelvic pain, this takes time, especially since there are so many different things that could go wrong in that area and on top of that, IC patients often many co-existing condtions which complicate matters severely.

              But, even when they finally eliminate all the other possible things that COULD be causing problems "down there", and finally arrive at the d/x of IC, as we all know, at this point, the "fun" has just begun! That's because when they start the patient on meds, (usually beginning with Elmiron), it takes months and months just to see if that is going work or not. Meanwhile, most new IC patients do not understand why it is taking them so long to be d/xed and that once they are dxed, why their Drs cant just write them some r/xes that will fix things. (Which of course, the Dr. would desperately LOVE to be able to do. However, as we all know, it just doesnt work that way because Drs dont usually want to try more than one med at a time,that way they can see what works and what doesnt, and so they will know which med is causing the pt. side effects. Meanwhile most pts dont understand why the Drs cant give them pain meds during this time, but the Drs dont want to start them on that road while they are trying the other meds, b/c they are afraid that then they wont know if it is the other med making the pt feel better, or if it is the pain med. (Plus, the Drs are watched so close by the DEA these days, that many Drs. are afraid to r/x pain meds for anyone. Many don't even r/x them for a short term illness or injury, let alone for a life-long conditon such as IC!) On top of that most of them know that once they start a pt on pain meds, a large percentage of those pts will never get off of them. IC patients are also quite time consuming. Drs can usually treat 2 sore threats and even a UTI or 2 (and get paid for them), in the time they end up spending with ONE IC patient.

              So, according to my cousin and my ex who are both Drs, those are the reasons some Drs. will feign ignorance when faced with a patient with an illness that they would rather not deal with. Yes, I realize it is sad and appalling, but when faced with a Dr. like that, you will never know if he/she is truly that ignorant about this disease, or if they just dont want to deal with an IC patient. But, either way, if you come across one like that (or like the one you dealt with), then it is best to just move on until you find a Dr. that really does want to take you on, and truly is knowledgable about IC. (Or if nothing else, is at least willing to learn about it.)

              I hope you find a good, knowledgabe Dr. very soon and find the right combo of meds that work for you quickly.

              Sending hugs,
              Amaranthe
              I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

              D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

              Meds: Estrogel (due to total Hyster)
              The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


              (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


              John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

              Comment


              • #8
                Dear Claire,

                I forgot to tell you that there is definately hope for your vulvar pain. It is a simple surgery called a vulvarvestibulectomy. I had it done in around 2004 or 2005 and it cured my vulvarvestibulitis. (That's the name of the problem that it sounds like you have with your vulva.) Vulvar vestibulitis (VV for short), is a very common co-existing condition with IC. We arent sure why, but a much larger segment of ICers have this (along with many other conditons), than the general population.)
                Anyway, it's 4:13 am and I've been up all nite with a severe urinary tract infection and high fever, so rather than explaining all about it here, I will try to find a few of the links for you that explain it all. If I dont find them right now, I will look later today, (after I have finally slept.)

                Sending hugs,
                Amaranthe
                I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

                D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

                Meds: Estrogel (due to total Hyster)
                The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


                (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


                John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

                Comment


                • #9
                  I am sorry to hear about your uro, I have had to deal with my share of bad ones as well. I believe I went to 5, including a pediatric one when I was about 13, before I actually found one who was willing to listen to me and treat me.

                  Some of the crazy things other urologists did/said:
                  -Accusing me of being a hypochondriac
                  -Telling me that it was all because of my anxiety, and I just needed to chill out
                  -Told me that if sex hurt, I shouldn't have sex anymore
                  -Implied that I was a sex addict and a freak for wanting to find a solution to painful orgasms
                  -Saying that they won't help with sexual issues for "people like me" (20 years old, unmarried)
                  -Said I needed exploratory surgery before they would try any drugs
                  -Putting on my chart that I was pill seeking, which prevented me from getting ANY prescriptions except Pyridium from anyone else in the practice
                  -Saying there was nothing they could do for me after a urodynamics test turned up normal
                  -Refusing to believe that catheters cause me excruciating pain



                  It took thousands of dollars and almost a decade before I found someone who would talk to me with respect and treat my condition. I didn't even try to go to urologists between the ages of 20 and 23 because so many of my doctors tried to shame me about having sex that I didn't want to talk to a doctor about it anymore.

                  There are SO MANY urologists that either don't want to bother or have no idea how to treat an IC patient. I wish that our condition was better understood. It seems like female "down there" pain is taboo to speak about in our society. I feel so much sympathy for people who are still struggling with their doctors instead of having a doctor that is working with them.
                  Medications and Supplements:
                  BladderQ
                  Pyridium
                  D-Mannose powder
                  Cranmax

                  Lifestyle:
                  Lacto-ovo-vegetarian and IC diet
                  Meditation
                  Positive mental attitude!

                  Comment

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