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Cysto next week...Urologist worries me...

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  • #1

    Cysto next week...Urologist worries me...

    I had my first appointment with my Urologist yesterday. He spent all of two minutes with me in outpatient. My doctor faxed him my background and he did not even check his office. He asked me what I was seeing him for!!! Yikes! I showed him my current meds and he asked me what Hydroxyzine(Atarax) was for! He was confused as to why I would be taking an antihistimine. That is scary. My regular GP seems to be so much more up to date on IC treatments.

    That leads me to the cysto next week. He said to eat a regular meal so I expect only local anesthetic, if any. I was in a lot of pain just with the potassium/water test my GP performed. Unfortunately I have to travel 2 1/2 hours to Alberta to see the Urologist. The drive alone makes me so uncomfortable.

    Sorry for the rant. I am just not comfortable with the whole thing.
    Interstitial Cystitis: Elmiron and Hydroxyzine
    Depression/Anxiety: Remeron, Cipralex and Clonazepam

    *tried instills for nearly a year, had a break then started again for about 4 months...discontinued due to no improvement and increased flares
    * 2 hydrodistentions :

    * currently on "Nabilone" for pain management

    Taken the following:
    Gabapentin no relief but could tolerate it
    Lyricano relief but could tolerate it
    Cymbalta severe depression/anxiety etc.
    Topamax severe nausea and weight loss
    Oxycodone: I could tolerate if I used it for flares only...not for extended use due to constipation

    What helps IC: yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture

    Other conditions...
    Vulvadynia (amytriptaline cream - no longer using to to irritation)
    Severe IBS
    Chronic Sinus pain (nasal rinse as need)
    Migraines
    Lower back and sacroiliac joint disfunction

    Allergies: Erythromycin, scents and detergents
    Tags: None
    • #2
      You might want to call your GP and ask for some advice. It may be that a different doctor would be better for you.

      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.

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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.       [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

        Comment

        • #3
          If you do not feel comfortable with this doctor then that is a red flag with me.. I wish I would of went with my gut feeling about the Uro who did my cysto/hydro..If I would have I prob would not be in the shape I am today..Follow your first instinct its usually right
          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

            • #4
              Agree with the last two posts. Sounds like a second opinion from another urologist is a good idea. Your primary care doctor or your gynecologist might be able to refer you to a more up-to-date or knowledgeable one.
              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

                • #5
                  Urologist appointment

                  Maybe it is my anxiety getting the best of me. If I do not take this appointment, I will have to wait a minimum 3 months to see another Urologist. They send one into our town every 3 months to do outpatient referals. So if I see him, he will probably wait until the next visit to do a cysto, then it will be November. I don't have much choice.

                  Thank goodness for this site. The closest support group is a 6 hour drive away.
                  Interstitial Cystitis: Elmiron and Hydroxyzine
                  Depression/Anxiety: Remeron, Cipralex and Clonazepam

                  *tried instills for nearly a year, had a break then started again for about 4 months...discontinued due to no improvement and increased flares
                  * 2 hydrodistentions :

                  * currently on "Nabilone" for pain management

                  Taken the following:
                  Gabapentin no relief but could tolerate it
                  Lyricano relief but could tolerate it
                  Cymbalta severe depression/anxiety etc.
                  Topamax severe nausea and weight loss
                  Oxycodone: I could tolerate if I used it for flares only...not for extended use due to constipation

                  What helps IC: yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture

                  Other conditions...
                  Vulvadynia (amytriptaline cream - no longer using to to irritation)
                  Severe IBS
                  Chronic Sinus pain (nasal rinse as need)
                  Migraines
                  Lower back and sacroiliac joint disfunction

                  Allergies: Erythromycin, scents and detergents

                    Comment

                    • #6
                      Cysto etc.

                      Yes, I had a postitive PST performed . I was on track to return to teaching this week. I went to my GP and had been flaring badly for a few days. I could not even sit at the appointment. I was pacing his office as he asked me questions. He sent me for a urine test. It came back negative as usual. He called and got me an emergency appointment with the Urologist. I am now off work until the end of June. My health is just too unpredictable right now. The added stress of returning to teach near the end of school year is not good either.

                      Yes, my GP has prescribed all my meds. so far. He is so supportive and knowlegable. I think I will try and call him and voice my concerns. I really don't want to wait longer. I would rather just get this cysto over with.
                      Interstitial Cystitis: Elmiron and Hydroxyzine
                      Depression/Anxiety: Remeron, Cipralex and Clonazepam

                      *tried instills for nearly a year, had a break then started again for about 4 months...discontinued due to no improvement and increased flares
                      * 2 hydrodistentions :

                      * currently on "Nabilone" for pain management

                      Taken the following:
                      Gabapentin no relief but could tolerate it
                      Lyricano relief but could tolerate it
                      Cymbalta severe depression/anxiety etc.
                      Topamax severe nausea and weight loss
                      Oxycodone: I could tolerate if I used it for flares only...not for extended use due to constipation

                      What helps IC: yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture

                      Other conditions...
                      Vulvadynia (amytriptaline cream - no longer using to to irritation)
                      Severe IBS
                      Chronic Sinus pain (nasal rinse as need)
                      Migraines
                      Lower back and sacroiliac joint disfunction

                      Allergies: Erythromycin, scents and detergents

                        Comment

                        • #7
                          I agree with the others, I would get a second opinion. But I also see your point as well, 3 to 6 months wait to see another doctor. Is it possible to find another doctor before this time frame? I know you mentioned a 6 hour drive? Isn't there one closer to where you work/live? Sounds like Your GP is very helpful, (I know mine is--I think I see him more than my URO) Either way, good luck in what you do.)

                            Comment

                            • #8
                              I went through 4 docs/uros before the 5th one diagnosed me. I can't stress enough to TRUST YOUR GUT FEELINGS. If you are feeling uncomfortable with this uro, ask your GP to recommend someone else - even if your procedure is coming up soon.

                              Many of us have learned the hard way that we should have opened our mouths when we didn't feel comfortable. There ARE many docs out there who take IC patients very seriously, and are gentle and thorough! Don't settle!!

                              Warm Hugs,
                              Beth
                              IC diagnosis 1999
                              Meds: Elmiron
                              hydroxyzine hcl
                              DMSO as needed
                              valium as needed
                              librax 3x day

                              TENS therapy



                              Thanks to all on the boards - YOU have helped more than I can say!


                              A person's true wealth is the good he or she does in the world.

                                Comment

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