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Urologist says that I just have to live with this ! What do I do now ?

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  • Urologist says that I just have to live with this ! What do I do now ?

    Hi everyone. I had what I believed to be a Flare that lasted a month starting in March. My G.P. gave me Tramadol for the pain and started me on Oxybutin. I had some incontinence that the Oxy helped. I saw a Urologist . He doesn't believe that IC exist and told me that I have Pelvic Floor Dysfuntion. I don't really fit the symotoms of that disease. By the time I could get in to see another Urologist, the symptoms had all stopped. He said that I don't have IC because it never goes away. I seem to have all of the IC symtoms that occur during a Flare. This has happend 2 other times in the past 15 years and I am starting to have symptoms again. I have no other Urologists to turn to in my area. I actually see my G.P. tomorrow, Friday , July 1st. I am going to ask her to treat this the best she can. Right now my symptoms are a constant urge to urinate which worsens as my bladder fills. If I drink a bottle of water, within 15 minutes I am going to the bathroom every 10 minutes until I guess my bladder is fairly empty. I also just feel like I have to go all the time. No incontinence and am on 10 Mg Oxybutin one time daily. With the last Flare, this is how it all started and it progressed to severe discomfort and occassional sharp pains in my bladder. Any suggestions on what this may be and what medications would help me ? I just want to sit and cry because no one wants to help me.

  • #2
    You may have to travel a little, but I suggest you see a different urologist --- your GP may be able to help with a suggestion.

    Warm hugs,
    Stay safe

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    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.

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    • #3
      The first uro I saw said the same thing to me. He didn't believe it was IC because the symptoms would come and go. Since then I have seen a few more doctors- all of whom stated it was very common for symptoms of IC to come and go. I ended up having both pelvic floor spasms and IC and was treated for both, so seeing another uro is probably a good idea even if you need to travel a ways.


      • #4
        My IC is continuous - it never goes away - just sometimes is a little better, sometimes worse. My mom has a milder case - doesn't have high symptoms all the time & has a more relaxed diet than I do, but she still has it. My grandmother had episodes of IC throughout her life, didn't know what it was called, but "discovered" if she ate bland foods during those times the pain & frequency went away.

        I agree with the above messages, I'd look for a new urologist. And don't worry too much about distance - if you get a good one who knows how to treat what you have, you don't need to go very often.

        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!


        • #5
          Have you talked to your GYN about this? Mine was very knowledgable and
          and he is the one that treats me. My Urologist was an A..H....He knew nothing about what was wrong with me and just kept giving me prescriptions for OAB meds,none of them worked for me because I didn't have OAB.
          My GYN is UROGYN.


          • #6
            I agree with Donna find another Uro, even if you have to travel some.

            It's not right for doctors to ignore you they took an oath to help people.

            Some doctors are in it for the money only, and that is so wrong.

            I hope you find a good Uro soon and he can provide you with answers and treatment options.
            <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>


            • #7
              I have to say find another Uro as well. I went through quite a few doctors before I found one who actually was helpful/ IC knowledgeable.

              My symptoms have always fluctuated between periods of being near normal and periods of complete misery. I now suspect this was mainly the result of triggers that were unknown to me at the time.

              I'm not sure where you are and I know that one person's 'in the area' varies quite a bit from the next person's. (Where I am in the west, being within 200 miles is considered within the area ) But if you do have to travel, -and they really help you, it would be worth it. Once better, you probably won't be having to see them that often anymore.

              I'm sorry you're going through this!
              "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."


              • #8
                Sorry you are not feeling so well :-(. I went through this, too. My first urologist said it was PFD and attributed the trace amount of microscopic blood in my urine to me straining to get my urine stream started. While I do believe that I have pelvic floor spasms from time to time, I didn't think that my straining was causing the microscopic hematuria, and all of my other symptoms. I went to my OBGYN to have her check me out, and she set me up with a different urologist, who did a consultation with me last week, and then had me come back a few days ago on Monday for a KCl instillation test. He diagnosed me with early IC and has me taking Elmiron. So, I DO agree with everyone on here: I hope you can find a different urologist, because it will all be worth it to find out what's REALLY going on inside of you. Good luck to you and I hope you feel better soon!


                • #9
                  Hope you feel better soon!!!
                  28 yrs old,

                  I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

                  What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

                  Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!

                  Me in my graduation gown!


                  • #10
                    Try using Prelief while you look for another URO. I've had IC for 20 years now. A recent UTI left me in a bad flare. I had some Prelief in my cabinet, but hadn't used it in a very long time. In desperation I decided to take it before I ate or drank anything. Within 3 days, I was over the flare completely. Their are some amazing reviews of this product on their web site, many of them from ICers. I'm going to continue to take Prelief on a daily basis. Here's a link to the reviews: