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hooray!! my urethra feels better than it has in EIGHT years!

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  • hooray!! my urethra feels better than it has in EIGHT years!

    I am TOTALLY motivated!!

    After my whole cysto and hydro roller coaster, I am glad to report that my urethra feels better than it has in EIGHT long years!

    The silver lining to all of this is that after all that, my doctor prescribed several medications, and today I am ready to PARTAY!!! My urethra feels NORMAL!!!

    Doodle-y Doo, my pee is blue;
    What a treat, my urethra feels neat!

    There are things to rejoice about today!
    :woohoo:

  • #2
    I am so happy for you! I have good urethra days and bad. Lately good ones.
    All my pain is really urethra. Are you taking anything? I would loved to know. especially if its something I haven't tried yet.
    Dx Pelvic Pain Syndrome 10/2007. Cysto/Hydro show Negative for IC

    Current Meds:
    Levbid for urethra spasms (haven't needed this for 2 years)
    Pyridium when needed
    BC pills
    Macrobid for after intercourse (haven't needed this for 2 years)
    tried and stopped Elavil because of side effects
    Ice packs are almost instant relief for my external burning/ and I love MSM gel/hydro cortizone cream
    Trigger Point injections for tender and tight Levatar Ani muscles (did not work)

    Comment


    • #3
      I have the "blue pee" too and that medicine has been a huge difference in the way my urethea and bladder feel. I thought that the interstim made me feel so much better, but after taking Prosed DS almost 5 years later, I feel more symptom free then I ever have. I know it doesn't work for everyone, but I amsoglad that it has helped you! I love to hear when people have success due to a med or treatment!

      Hugs, 83

      Comment


      • #4
        profhucklebee-

        That's GREAT news! I'm happy to hear you are doing better.

        What meds are you on?
        Jen

        Comment


        • #5
          Yeah for Utira-C!

          The medication I am taking that seems to have made all the difference with my urethra is called Utira-C, its a combo drug, I think it has three different commonly prescribed medications combined to make one pill.

          I am also on Elmiron, doxazosin and Celebrex.

          The part I can't believe is how EXPENSIVE these medications are! I added up my costs if I didn't have insurance and these medications altogether were nearly $1000.00!! And that didn't include the Levaquin the doctor prescribed for self use (after intercourse). The Levaquin was another almost $400.00.

          I do think that pyridium seemed to make my urine MORE ouchie, rather than less... I mentioned this to my uro and they decided to try the blue analgesic instead. I think it really made it loads better... I noticed a difference within hours of taking the Utira-C.

          I could go running in the streets singing: "My urethra feels better, my urethra feels better...!" But my family discouraged that behavior.
          I will do it here with you guys because you can truly appreciate it!

          LoL :woohoo:

          Comment


          • #6
            What meds make you pee blue? Do you have to take them everyday or just as needed?
            Diagnosed IC Jan 2008

            What works for me: Singulair, Elmiron, Hydroxyzine, doing right for my body (light exercise, eating healthy, plently of sleep), OTC allergy meds

            What does not work for me: MSM/Glucosamine (no effect what-so-ever), cystoprotek (flair city!), tofranil (so constipated it made the whole situation worse) birth control pills (to many negative side effects)

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            • #7
              I am glad you have found something to help. Most people do, it just takes time!
              Jolene

              "Life is what happens when you are making other plans" John Lennon

              IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

              Information for Patients can be found here.
              http://www.ic-network.com/patientlinks.html


              Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




              Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

              "IC Angel 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."

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              • #8
                urethra stenosis

                I am so happy for you !!! I hope this continues for you my main issue is my urethra I have been reading these message boards from day one before I was told I had Ic, and then in March of 2005, after the cystoscopy was told I had Mild Ic. I was scared and near suicide I lost close to 15lbs in 2 weeks and was down to 114lbs I am now 38years old. I went to see a different urogyne because the first doctor who diagnose me kept dismissing my urethral symptoms and kept telling me it was referred pain and it didn't make sense to me if I had no bladder pain, or burning, but it seems that is it part of the same disease I guess, my urogyne told me I had major redness and inflammation of the urethra and suggested I try urethral suppositories they work for me so far it's a combo of steroid and antibotic it's used 3x's a week for a month. So after 2 years I was great and thought gee maybe I don't have ic and then 2 mos ago I had bladder pain and burning so I started the diet am I doing very well I am taking elavil, elmiron and Neurotin for My vulvodyina, I do have low acid coffee here and there that is what I absolutely miss the most I love coffee I do okay I may flare for a few hours and it's over so far so good but I will limit myself.
                anyway that's my story , but my question to you all after this long and winded story I'd like to ask has anyone been dialeted before? I had been twice last year because my urine flow was terrible and the doctor did note I had urethral stenosis and today my urethra doesn't burn so that's good but it's someone tender and I get twinges sometimes and sitting is more noticeable, my doctor says he doesn't recommend another dialation unless things get really bad. he said I have to accept that I will always never be normal and it's difficult to accept.

                Comment


                • #9
                  Blue Pill

                  Hi,
                  I take Urelle. It's a combo of methylene blue, and hyoscyamine- an antispasmodic which is also available generically as Levsin.

                  Comment


                  • #10
                    urethra

                    I am so happy finally something is working for your I have had urethral symptoms of and on for 3years after my diagnoses if Ic I have to say my urethra is my biggest problem I don't have a burn feeling but more like I have to go pee feeling no urgency and my bladder is well that is not my problem so happy to report that, but I wish my urethra would get better my uro says it's part urethral stenosis and chronic inflammation that has been seen in the cystocopy, I just wonder to all of you who have urethral problems what are your symptoms, I would have to say if my urethra felt fine, I would declaire a remission.

                    Comment


                    • #11
                      Absolutely ditto.

                      Unfortuantely, the blues do not work for my urethra. I have been thinking about the suppositories though.

                      Originally posted by Mary Ann Maurer View Post
                      I am so happy finally something is working for your I have had urethral symptoms of and on for 3years after my diagnoses if Ic I have to say my urethra is my biggest problem I don't have a burn feeling but more like I have to go pee feeling no urgency and my bladder is well that is not my problem so happy to report that, but I wish my urethra would get better my uro says it's part urethral stenosis and chronic inflammation that has been seen in the cystocopy, I just wonder to all of you who have urethral problems what are your symptoms, I would have to say if my urethra felt fine, I would declaire a remission.

                      Comment


                      • #12
                        urethra

                        Hi there, this disease is so weird and we all have so many different kind of symptoms but itl comes down to being Ic , I have Vulvodynia but the discomfort is near , around the urethra I wonder if my urethra gets better than I suppose the vulvodynia would get better also? sometimes I think I should have been a male, even though I know men do get Ic it's just us woman are plagued with so much!!!! I tell you back to the bible times, we were doomed seriously after eve ate that apple, just a bit of humor!.

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                        • #13
                          The blue pill miracle

                          I had no idea that there was anything out there other than pyridium, and had been telling the doctors for years that the pyridium made my urethra hurt worse... only just now, with this newest urologist did anyone even hear me.
                          He seems to think that it is a very common allergy for women to have, as the yellow dye in it can be an issue.

                          If you are having urethra pain, I would definitely ask my doctor about trying the blue pill... you have nothing to lose but the pain, and who needs that anyhow?

                          My urologist also said that I might notice a difference with IBS symptoms while taking the Utira C as well. I have TOTALLY noticed a difference. It feels WAY better!
                          I have less cramping (hyoscyamine probably making the spasms go away).

                          Has anyone else noticed this too?

                          Comment


                          • #14
                            Congrats:woohoo: Maybe I should switch to it. During this crappy uti my urethra has felt it is being doused with battery acid. Thanks for the info.
                            Last edited by TexasHoney; 04-23-2008, 05:17 PM.
                            TexasHoney

                            Let's keep praying for a cure.
                            IC Symptoms began in early 2001
                            Divorced : Sept 2002 (Partly due to IC)
                            Diagnosed with IC in April 2004
                            Most recent injury - Rupurtured Left Achilles Tendon
                            Wed Jan 28 2009
                            (Ice Storm Accident)
                            2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
                            Other Injuries
                            Broken Left Ankle - July 2004 ( fell off ladder)
                            Broken Left Ankle (Again) - May 2005 (car accident)
                            Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

                            CURRENT MEDS
                            Elmiron, Pyridium

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                            • #15
                              I had a hydrodistention in July '07 and about a month later I started feeling so much better. I wasn't sure if it was from the hydro itself or the Elmiron (maybe both?). Most of my pain is urethral as well only it's not burning but stabbing shooting pain and pressure. My dr said when he went in to do the hydro that my urethra was very very inflammed compared to the IC in my bladder. I have not been able to find a pharmacy that can get Urelle in my state (California). I don't think it's available in certain states . . I'm not sure it would help me anyway since my urethra doesn't actually burn. Pyridium has never done anything for me either.
                              The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                              First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                              Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                              Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                              Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                              BABY GIRL 10/28/08 *** BABY BOY 7/8/11

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