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  • Just a question

    Hello ladies,
    I just had a question, I hope it's not too ridiculous. I was diagnosed last June by a uro-gyn in London (Ont) and my dr in my hometown is sending me to one here to have another cysto, hydro and dialation.
    Since about May of this year I have been on the Elmiron and I take it religously. I still have some pretty nasty spasms and burning and now the latest...when I sit down I cannot pee. I have to go through this whole relaxtion thing before anything will come out! Just like it was prior to my first dialation...I'll thank the Dr who implanted that nasty mesh in me forever more.
    My question is, since I have taken the Elmiron does that mean when I go for the cysto (Sept 15) that my bladder will look fine and I'll look crazy? I fear him going in there and him seeing a perfect bladder. Thanks
    Canadian daisy

    Current Medications: doses go up and down..
    Dilaudid, Elmiron, Neurontin ,Flexeril ,Pariet, Ibuprofen, Ativan, Valtrex, Vitamin D, Caltrate, Premarin Vag Cream, Triamcinolone Injections in Perineum, Depo-Medrol for Trigger Point Injections, Biscodyl, Citromag, Milk of Magnesia, Xylocaine Jelly

  • #2
    If you're still having symptoms I doubt your bladder will look fine when distended.

    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


    • #3
      I'm sorry if this is a dumb question but if I'm NOT having a flare and have been okay for awhile does that mean that the bladder WILL appear normal and has that ever happened to anyone? Does the dr then doubt all your complaints because he didin't "see" it for himself and it was someone else's diagnosis? I just want my bladder to look like it did last year so it is confirmed by this dr you know? Ugh
      Canadian daisy

      Current Medications: doses go up and down..
      Dilaudid, Elmiron, Neurontin ,Flexeril ,Pariet, Ibuprofen, Ativan, Valtrex, Vitamin D, Caltrate, Premarin Vag Cream, Triamcinolone Injections in Perineum, Depo-Medrol for Trigger Point Injections, Biscodyl, Citromag, Milk of Magnesia, Xylocaine Jelly

      Comment


      • #4
        You're expressing the same fears as I have had in the past when scheduling hydrodistentions. The IC has always been visible.

        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


        • #5
          Question/ concerns

          I was wondering if any one with IC also has Endometriois? I was just recently diagnosed with IC July 18, 2011. My urgoloist has been trying many different things as well as medicines. I also have Pelvic Floor dysfuntion. My urgoloist is sending my to a GYN tomorrow to see if she thinks I need to have any other procedures done. The urgoloist is wanting to do a Cystoscopy Hydrodisten ASAP. I am so nervous and overwhelmed with everything. I was also wondering if any one experiences or has problems with bladder Spasms. I have those alot and it is so weird feeling. I have been having those bad today. I have been in so much pain. Saturday morning the pain woke me up and I was in tears. I hate that we have to go thru all of those. Just wondering if anyone else had any information on all this. And if you do have Endometriois how did they diagnosed this?

          Thanks,
          Beverly

          Comment


          • #6
            canadian daisy- I've had two cystos with distention. One showed a slight inflammation and the other showed no inflammation and a normal bladder. Apparently my inflammation came and went, so in my case it was possible. I've never had a dr. doubt that I had a problem but some have wanted to do their own testing to make their own conclusions. Sometimes this can be good though as a new dr. may find something that the other one didn't.

            Comment


            • #7
              Beverly- Yes I get bladder spasms all the time and especially during/after sex. It IS a weird feeling but I would describle it as painful and hot and unending sometimes! My new uro prescribed the valium suppositories. ( I actually printed the info off the site and brought it into him. He has never heard of using valium) I really don't have much faith in him seeing as he's not that experienced with IC. When I got it diagnosed last year the dr was an IC specialist but the reason I am now seeing this dr is he's in my town.
              I don't have endo but I had a sever bladder prolapse as well as a rectocele. I had major reconstructive surgery on my vagina and bum and I will tell anyone who reads this, PLEASE do not "repair" your vagina. A simple cysto, dialation and hydro is not what I'm talking about. I'm talking about being cut all the way up to your cervix kind of repair. They sewed me too tight and I am left with my vagina being too tight, a ton of scar tissue on my labia and extreme skin loss in my perineum and it causes a lot of bleeding even with just wearing a pair of pants that are slightly tight in the rear, sex is horrid..even without the ic I already knew what hell was. I had bladder leakage as well and he put in a sling under my urethra to "fix" it. Sure he fixed it, 2 years laster and I cannot void properly and until my Ic dr did the first dialation I was totally unable to have an orgasm. I'm sorry about the rant but I feel responsible somehow in telling every woman that I am able to. Maybe all these terrible things happened the way it did so I could be a voice for women. I am now a chronic pain patient at 35, unable to work and will never be able to because of this mightmare. Ladies do your research BEFORE agreeing to a big surgery. Again I am NOT talking about cystos and such.
              Earthlady and Donna I just worry that the new dr will see my bladder as being "fine" and not see any need for a distention or the Elmiron. I always worry about them not believeing me. I know this will sound terrible and I'm sorry if I offend anyone but when the dr is a man I am already leary. Is that terrible? I have had some really bad experiences with male drs diminishing my pain so I'm jaded I guess.
              Thanks for being here ladies. Oh and as for them not seeing anything..I must've really upset my bladder the other day doing something I am totally unsure of because it has been a non stop burning spasm fest. I am going between 26 and 34 times with nothing really coming out. And it's SO annoying to sit there waiting....waiting for this big gush and finally only a trickle comes out. Sheesh! What next??!!
              xoxoxox
              Canadian daisy

              Current Medications: doses go up and down..
              Dilaudid, Elmiron, Neurontin ,Flexeril ,Pariet, Ibuprofen, Ativan, Valtrex, Vitamin D, Caltrate, Premarin Vag Cream, Triamcinolone Injections in Perineum, Depo-Medrol for Trigger Point Injections, Biscodyl, Citromag, Milk of Magnesia, Xylocaine Jelly

              Comment


              • #8
                One of the things that happens to me when I see my urologist is that he orders medications to help me feel better until the hydro can be scheduled. And yes, I have many times worried that the IC won't be visible during the hydro --- it always is.

                I also had surgery for cystocele and rectocele (separate surgeries) and a Raz procedure for stress incontinence. I had excellent response to all three surgeries and am so thankful I had them.

                I'm so sorry you had poor results. Have you considered seeing a different doctor to see if any of the problems can be corrected?

                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


                • #9
                  You are very lucky all went well!
                  I have seen 3 different drs about this, travelled far and wide. I have had weekly injections in my perineum with a cortisone/lidocaine mixture to TRY to break up all the scar tissue, massage, premarin cream (used externally to try to strenghten the skin and restore elasticity, vit e, anusol and the best...I HAVE to use a 2% Lidocaine gel all over my vaginal area roughly 20 mins prior to intercourse..at 35!!!!!!! The *pnly* way to attempt "fixing" this mess is a surgical dissection. I had the surgery Oct 1 2009 and I can say that never in my life had I experienced so much pain. I was totally bedridden. I have 3 kids and two of which are babies. The one was barely 8 months old at the time. I have suffered great mental distress over this. The surgery has RUINED my life.
                  Coincidentally I now have major back/disc issues that mysteriously "awoke" after said surgery.
                  I know God works in mysterious ways (I hope I don't get in trouble for saying God..I am a very devout Christian) but I search daily WHY has this happened? Why me? My pastor is trying to help me with this feeling. I even feel anger and that's not me I am on terrible medications for the nerve pain(back issues) Neurontin and heavy doses of Dilaudid every day..and then add Elmiron I take 16-20 pills a day to even deal with this junk. I pray for a relief from the pain. If any of you are religous (prayer warriors ) I would ask that you too please pray for relief for me. My family is suffering. We are young, my husband is FANTASTIC about this. He never pressures me at all. He gets me my medications when I'm laying down, he cleans up, helps with the kids and he reassures me when I get down like this. He says "the woman I married IS still in there, she's just hurt real bad and I would give anything to take your pain away". Just the other day, he sent me beautiful flowers, I was having a very bad day. I KNOW he is my blessing.
                  Thank you all for being my friends and being here for me
                  Canadian daisy

                  Current Medications: doses go up and down..
                  Dilaudid, Elmiron, Neurontin ,Flexeril ,Pariet, Ibuprofen, Ativan, Valtrex, Vitamin D, Caltrate, Premarin Vag Cream, Triamcinolone Injections in Perineum, Depo-Medrol for Trigger Point Injections, Biscodyl, Citromag, Milk of Magnesia, Xylocaine Jelly

                  Comment


                  • #10
                    I will pray for you I also want to say that it sounds like you have a wonderful husband. God Bless you
                    Elmiron 100mg 3x day
                    Pyridium
                    Elivil 25mg 1xday



                    "I'd trade every moment under the sun for just one moment with The Son"

                    Comment


                    • #11
                      Thank you Mugglelady
                      Have a great day!
                      Canadian daisy

                      Current Medications: doses go up and down..
                      Dilaudid, Elmiron, Neurontin ,Flexeril ,Pariet, Ibuprofen, Ativan, Valtrex, Vitamin D, Caltrate, Premarin Vag Cream, Triamcinolone Injections in Perineum, Depo-Medrol for Trigger Point Injections, Biscodyl, Citromag, Milk of Magnesia, Xylocaine Jelly

                      Comment


                      • #12
                        Originally posted by canadian daisy View Post
                        I know God works in mysterious ways (I hope I don't get in trouble for saying God..I am a very devout Christian) but I search daily WHY has this happened? Why me? My pastor is trying to help me with this feeling. I even feel anger and that's not me I am on terrible medications for the nerve pain(back issues) Neurontin and heavy doses of Dilaudid every day..and then add Elmiron I take 16-20 pills a day to even deal with this junk. I pray for a relief from the pain. If any of you are religous (prayer warriors ) I would ask that you too please pray for relief for me.
                        I understand how you feel. I also suffer from another poorly understood, debilitating condition, gastroparesis (literally "paralysis of the stomach"), and sometimes I feel like God must "have it in for me" even though I know that's not true. I try to remember that illness is part of our world because it's an imperfect world, and these things happen to believers and nonbelievers alike. But how wonderful it is that we, as believers, can turn to the Lord in our distress! I prayed for you tonight and will certainly keep praying for you.

                        Comment


                        • #13
                          I'm sorry to hear this horrible story I will be praying for you and your family!For Strength,Grace,and his Mercies &ComfortSending hugs to you and hoping brighter days for you and all of us who suffer with this enemy of ours! Prayerfully your ic friend Julie

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