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  • #1

    new and arguing with dr

    Hi everyone..
    im 34 years old, mom of 2 and IC symptoms started last year around the same time i got an IUD put in..I was always in pain, After fiance came to visit id would be worse..Sex was almost intolerable but i started using oragel and tylenol 3s..every time he left id get a uti so she put me on macrobid daily when he was here. i finally got iud out and still in pain...and peeing every 5-10 mins..
    dr finally diagnosed me with IC and all the symptoms are there....i cant see urology until end of july so no "official tests" or treatments. she told me to cut back on caffeine until then..i handle pain really well..i dont cry..so the pain is not that abd in her mind i guess...
    i make dinner for the kids every night then i eat lying down bc i cant sit..its totally ruining my life..
    im going to visit fiance wed. its a 8 hour drive..i cant imagine peeing even every half hour...we'll never get there..rest stop unlatch kids traipse them trough..every 30 mins a 30 min stop...friends of mine are nurses they ffered to put a foley in for the drive..my Dr was like no way you could get an infection...i have the macrobid anyways?? thoughts?
    i expect the drive, the sex and eating out and im pmsing to flare me majorally while im down...any thoughts anyone? please
    Tags: None
  • #2
    new and arguing with doctor

    Originally posted by SkaterMom View Post
    Hi everyone..
    im 34 years old, mom of 2 and IC symptoms started last year around the same time i got an IUD put in..I was always in pain, After fiance came to visit id would be worse..Sex was almost intolerable but i started using oragel and tylenol 3s..every time he left id get a uti so she put me on macrobid daily when he was here. i finally got iud out and still in pain...and peeing every 5-10 mins..
    dr finally diagnosed me with IC and all the symptoms are there....i cant see urology until end of july so no "official tests" or treatments. she told me to cut back on caffeine until then..i handle pain really well..i dont cry..so the pain is not that abd in her mind i guess...
    i make dinner for the kids every night then i eat lying down bc i cant sit..its totally ruining my life..
    im going to visit fiance wed. its a 8 hour drive..i cant imagine peeing even every half hour...we'll never get there..rest stop unlatch kids traipse them trough..every 30 mins a 30 min stop...friends of mine are nurses they ffered to put a foley in for the drive..my Dr was like no way you could get an infection...i have the macrobid anyways?? thoughts?
    i expect the drive, the sex and eating out and im pmsing to flare me majorally while im down...any thoughts anyone? please
    Hi
    I'm sorry you need to be here, but glad you found us.
    First, if you haven't already, it would be a good idea for you to take a look at the IC diet,(scroll down through the forum jump to the diet pages) and give it a try. That helped me quite a bit. Probably you need to stop caffeine for a while too. It's pretty hard on most bladders. I know that's a tough one, but it often helps.
    Can you ask the doctor who DX'd you for some meds to keep you comfortable until you see the URO? Have you tried Azo(pyridium), which is, I believe OTC? That might help to take the edge off.
    For your very long trip, you could buy some Porta Johns. They're sold in the ICN shop or online and are bags that have material inside that turns urine into a solid. You then close the bag and toss it. No spilling. You can use them in the car if you need to. Take a look and see what you think.
    If you're feeling horrible, maybe the road trip could be put off a bit, until you see your URO? Or could your financee visit you instead?
    Anywho, just some thoughts. I'm sure you'll get lots of responses and ideas.
    Hugs,
    Laurie

    Comment

    • #3
      to the IC Network.

      Laurie is right --- there's a lot more to the IC diet than just cutting back on coffee. I suggest you begin an IC diet today. It just might help substantially with symptoms. You'll find the latest food list at the link in my signature below.

      I hope you get some real answers soon.

      Warm healing thoughts,
      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 agree with donna about the ic diet, however waiting until july to see a uro is ridiculous. you need to find a expert uro asap sooner than july, you should not have to suffer till july. i wish you the best of luck in finding a uro sooner. keep in touch this is a good support forum, we know what you are going through.
        <center>
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        • #5
          Thanks guys...
          im in Canada here here for free health care and the substantial wait times... AZO isnt available in canada in any form, unfortunately. If i make this trip to see fiance i will def stock it up..tho not sure it did a whole lot of good..

          diet is very hard for me bc i have a history of an eating disorder and my food choices are very limited as is. If i start restricting a lot of the foods i do eat that could open a whole other can of worms...

          fiance is a sportswriter so his ability to travel is limited.. we are going down to go to the bridal show in his hometown as thats where we need to get married so i cant plan from here.. i'll look at that john thing but with a 9 year old son id pretty much need to stop for privacy anyways..he def wouldnt wanna see him mama trying to pee in the SUV..ha

          thanks guys..if anyone has used a catheter please let me know..thanks

          Comment

          • #6
            Welcome, sorry to see yet another. Indwelling catheter is usually not an alternative, just think they are blowing up a balloon inside an irritated bladder. Not good. Indwelling catheter infections are not pretty. 8 hour drive, can you fly instead? By the time you stop, start, etc and the price of gas, might want to look into it. May cost a few more bucks, but airlines right now are being amazingly generous. Know an 8 hour trip by auto would only take and hour or so by air, but isn't it worth it?

            Sorry you have to wait so darn long to see a uro. That's crazy. Very surprised to hear that about the Canadian health system. Can you maybe push for a different doc, but then of course you want to be sure he/she is familiar with IC. That is just so sad. Don't know how the system works up there, could you maybe call and beg for an earlier appt? Ending up in emergency would cost the system a whole lot more. In the meantime, utilize the doc you have now, a lot of different treatments to at least keep your symptoms in check for now, and stick with the diet as much as you can.

            Stay strong, educate yourself and go to all doctors' appts informed. Take care of numero uno. Jill, wife of Bob (and congrats on your upcoming wedding!)

            Comment

            • #7
              I wouldn't be concerned about the balloon. It's very small and is just used to keep the catheter from falling out. The catheter itself could be very irritating, however.

              I hope you are able to take the trip without too much problem.

              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
                Depends? Just a thought.

                Comment

                • #9
                  Thermacare heat wraps work great for me. I've worn them thru many volleyball tournaments where I have to sit for long periods.

                  Suzanne

                  Comment

                  • #10
                    Try looking on line for azo at places like drugstore.com - they say they ship to tons of places so canada has to be 1 of them.
                    I'm sure you can find azo somewhere online to purchase.

                    Comment

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