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  • #1

    It hurts so much!

    It's 4 in the morning where I live. I have been awake since 2, and I think that after more than ten years, I'm finally losing it.

    It hurts so much. I wish I had a more eloquent way of stating it, but it feels like it's all there is to say: it hurts so much.

    I was 17 when I had my first 'infection'. Things went downhill from there. 'Flares' became more frequent. I saw several urologists, nothing gave. Until I read about IC two years ago, went once more to a (quite unfriendly) urologist. He concluded I had an overactive bladder, even though my urodynamic was fine, my bladder capacity seems ok and I have no problems with incontinence. I was quite sceptic about the whole operation, but then... The detrusitol he gave me actually helped. I was the happiest girl in the world.

    Fast forward to last august, when the problems came back as never before. The hope that it could be a simple UTI was in vain. Worse: several rounds of OAB meds aren't working. My doctor suggested physiotherapy, but it feels so senseless if they're not even having a decent diagnosis.

    So, I'm sitting here, wide awake with my camomile tea. I'm in pain, frustrated and confused. Do I have an OAB? Do I have IC? Am I nuts? Will I ever find out?

    Oh well. Tomorrow I'll go to my doctor, ask him to refer me to a new urologist once again, and go through the whole cycle of appointments, disappointments, testing, pain, disbelief, waiting... Someone help me, please!
    Not diagnosed yet

    More than a decade of 'bladder issues'
    Main symptoms: burning pain in urethra, urgency, frequency
    Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
    Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
    Starting physical therapy soon

    Getting married 7/7/2012
    Tags: None
  • #2
    So sorry you have to go threw this but please don't lose hope! I too saw I don't know how many doctors in March of this year before I found out what was wrong I cried everyday all day and was Miserable. Just don't give up till you find a Urologist who is also Familiar with IC. I wish you the best of luck and hang in there and know you are not alone we are all here for each other!

    Comment

    • #3
      I'm so sorry you're having a difficult time. Have you tried the IC diet? If not, I think it would be a good idea to begin today. It can't hurt and just might help. You'll find the latest food list at the link in my signature below.

      I hope you have success in finding a good doctor.

      Warm hugs,
      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
        Thanks Renate - good luck to you too, whatever you're going through ;-)

        Thanks Donna - I remember experimenting with the diet two years ago, didn't really work. I'm willing to try it again, but since I'm leaving for a holiday in 10 days, I'm thinking I should maybe start afterwards, since I will find it very hard to stick to a diet on vacation.
        Not diagnosed yet

        More than a decade of 'bladder issues'
        Main symptoms: burning pain in urethra, urgency, frequency
        Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
        Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
        Starting physical therapy soon

        Getting married 7/7/2012

        Comment

        • #5
          Hi Eline,
          You might consider just eliminating the top IC trigger foods for now & then fully implementing the diet after your holiday. You might have a better time on your vacation if you don't set off the worst of your symptoms with: tomato, citrus, alcohol, coffee, sodas, tea. There are still plenty of nice things to eat and you might enjoy yourself more if you're not having pain, frequency etc.! Just something to consider. I hope you have enjoyable time off and that your IC stays home, while you go out to have fun!
          Best,
          Kadi
          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

          • #6
            Thank you Kadi - I'll do just that. I hardly ever drink any of the drinks you mention anymore, because I know I pay for them dearly, and had already decided to cut them completely. I might as well add the tomatoes and citrus while I'm at it. I'll also change my tap water for bottled water.

            In the meantime, I discovered that my urine is very troubled. WHo knows, it just might be a plain old UTI this time.
            Not diagnosed yet

            More than a decade of 'bladder issues'
            Main symptoms: burning pain in urethra, urgency, frequency
            Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
            Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
            Starting physical therapy soon

            Getting married 7/7/2012

            Comment

            • #7
              Yeah, I think we're the only people in the world who get happy to find out we have a UTI!
              (Hey, something curable and easily treatable is always better than IC!)
              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

              • #8
                :-)

                Hm, I have mixed feelings. I'm afraid my GP will see a confirmed UTI as a final proof that nothing is really wrong. It may be a UTI now, but the last 12 cultures said 'no UTI'.

                So, when his office opens in an hour, I'll need to go there and say 'test me now, I think it's a UTI, but also please please refer my to a urologist'
                Not diagnosed yet

                More than a decade of 'bladder issues'
                Main symptoms: burning pain in urethra, urgency, frequency
                Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
                Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
                Starting physical therapy soon

                Getting married 7/7/2012

                Comment

                • #9
                  Just back from GP. There are white blood cells in my urine, so I'm on some UTI meds now. No culture taken.

                  But I've got an appointment with Urologist Nr. 4 next thursday - can't believe how fast that is!

                  And I ordered a set of urine test strips (blood cell and nitrite) at the pharmacy. Surprised you could get those over the counter, they're usually pretty strict over here in Belgium. I believe having a set of those at hand will improve my life.
                  Not diagnosed yet

                  More than a decade of 'bladder issues'
                  Main symptoms: burning pain in urethra, urgency, frequency
                  Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
                  Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
                  Starting physical therapy soon

                  Getting married 7/7/2012

                  Comment

                  • #10
                    I also keep test strips on hand. They aren't 100% accurate, but can give you an idea of whether or not there's infection there.

                    I hope you have found a doctor who can help. Just remember that it can take a while to diagnose IC and many doctors will want to try conservative treatments first.

                    Warm hugs,
                    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

                    • #11
                      As long as they try to help me and not give up on me :-)

                      It's not like I want to be diagnosed with IC, I just want a diagnosis. I would so much like to give my employer, my volunteering organizations and my friends an explanation for my 'unreliable' behaviour. They can't count on me the way they should. :-( And I just really want to know what's been bothering me for all these years, even if the answer is IC.

                      If any other diagnosis would be found along the road, that would be great of course. But as far as I know, IC is a bit of a 'rest-diagnosis' and most of the other options have been eliminated in the past.

                      If the new doc wants to play the elimination game once more, I'm in, as long as he doesn't turn me away without any answers...
                      Not diagnosed yet

                      More than a decade of 'bladder issues'
                      Main symptoms: burning pain in urethra, urgency, frequency
                      Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
                      Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
                      Starting physical therapy soon

                      Getting married 7/7/2012

                      Comment

                      • #12
                        I totally agree. My absolute worst time with IC was before I was diagnosed. Once I learned what I have I could begin dealing with it.

                        Sending gentle hugs,
                        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

                        • #13
                          Hang in there

                          I'm so sorry you have been having such pain.
                          This early Diagnosis thing is such a waiting game. Try to do something for your bladder even if it is deep breathing or a warm bath.
                          We are going to feel better! I just know it.
                          Joslyn
                          IC symptoms in May 2011
                          Mild IC dx by Cysto July 2011
                          Symtoms decrease 80% by September 2011!






                          Tums 100mg
                          fish oil 3-5 grams
                          Probiotic 5 billion
                          Magnesium
                          Bladder Ease
                          Unda Drops
                          Mediclear Plus Protein Shake

                          Physical Therapy Graduate!
                          Meditation 2x a day
                          Running
                          Castor oil pack
                          Teas (nettle leaf, linden flower, camomile, marshmellow root)

                          Have tried
                          In office instills (pridium, heprin, lidocain, elmiron)
                          Cystoprotec
                          Desert Harvest Aloe
                          atarax 25 mg
                          Vesicare
                          Lexapro
                          5HTP                          sanctura

                          Comment

                          • #14
                            Thanks for the support, it helps. Warm hugs for the both of you!
                            Not diagnosed yet

                            More than a decade of 'bladder issues'
                            Main symptoms: burning pain in urethra, urgency, frequency
                            Triggers: Alcohol, carbonated drinks, tight jeans, synthetic underwear, stress, dehydration
                            Tests: zillion negative cultures, a cysto-hydro with biopsy, two urodynamics, several cysto's and ultrasounds, a sphincter electromyogram
                            Starting physical therapy soon

                            Getting married 7/7/2012

                            Comment

                            • #15
                              I know what it is like to go into the office and explain the same thing and see what they are going to "wait and see" what to do. My first to urogyne visits were like that.

                              The third time I had a very candid discussion about my pain and what I would and would not take. Keep asking!

                              I'm committed to feeling better! Lets do this!
                              Joslyn
                              IC symptoms in May 2011
                              Mild IC dx by Cysto July 2011
                              Symtoms decrease 80% by September 2011!






                              Tums 100mg
                              fish oil 3-5 grams
                              Probiotic 5 billion
                              Magnesium
                              Bladder Ease
                              Unda Drops
                              Mediclear Plus Protein Shake

                              Physical Therapy Graduate!
                              Meditation 2x a day
                              Running
                              Castor oil pack
                              Teas (nettle leaf, linden flower, camomile, marshmellow root)

                              Have tried
                              In office instills (pridium, heprin, lidocain, elmiron)
                              Cystoprotec
                              Desert Harvest Aloe
                              atarax 25 mg
                              Vesicare
                              Lexapro
                              5HTP                              sanctura

                              Comment

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