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Reservse effects of IC treatments

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  • Reservse effects of IC treatments

    I've tried several of the Treatments for Ic and they have all had a reverse effect for me...I am now on daily heprin injections and some pretty weird things are happening to me body and I don't know if this is normal or not...I've tried calling my doc all week amd have not heard from him yet...I have no control over my bladder at times and the pain is horrible..It started last Wednesday, I had a horrible pain that felt like I was in labor and then the next thing I know I have wet all over myself...since then the pain has gotten worse and I am wetting on myself 4 and 5 times a day without knowing I have to go till it is over...I've started wearing depends pads and staying close to home which is causing ptroblems..becaus enoone nuderstands the pain an dthe way I husband and children think i'm loosing my mind an dmy boss and co workers are upset at my not being at work...what do I do and where can I turn..Please help me..Shelia

  • #2
    Hi Shelia. I'm so sorry that you are so sick and without the support we all need. I think that it is an outraage that your Doctor has not returned your phone calls. It sounds like it's time you found a new Doctor ! I am sending loving,healing thoughts your way. grouphug


    • #3
      Thank you Mis Mary..I am thinking of changing Uro's..This one has never had or taken alot of time to explain this stuff to me..What I know I got from here and researching IC..He doesn't seem to have time to talk about it with me...It's people like you that give me the courage to go on..Thanks so much.. angel


      • #4
        Hi Shiela and welcome to the boards and the network. I think I would try and find another uro, and get some much needed help, and find out what is going on with your body. It must be very hard for you to deal with everyday. Please keep us posted, as to how you are doing. You will find lots of support, and information here on the network. Let us know how you are, welcoming hug, Iris. hi grouphug
        Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


        • #5
          I have to agree that getting a second opinion from a different uro could be a very good idea. In the meantime, I do think you should be checked to be sure you don't have an infection going on.

          Are you instilling the heparin into your bladder?

          And please let us know how you are doing.

          Sending warm healing thoughts,
          Stay safe

          Elmiron Eye Disease Information Center -
          Elmiron Eye Disease Fact Sheet (Downloadable) -

          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:


          Diet list:

          AUA Guidelines:

          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.

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


          • #6
            Thank you all so much for your respones...yes I am still instilling the Heparin...I am going to look for a new Uro tommorrow...My doctor did tell me 3 weeks ago when I was there and started these treatments that if this didn't work he wanted me to look at the possibility of removing the bladder and me having a bag...that possibility scares me to death..has anyone ever heard of this due to IC..thanks again for your support...I definetly need it and your prayers..
            Shelia angel


            • #7
              Hey Sheila!

              IC does do crazy things to your body you are right on that! As far as your current doc you may want to find another uro and get another opinion. It took4 docs before I ever got diagnosed and two uro's before i found my current uro who was the one who finally confirmed what I had suspected . I know when all the changes are happening in your body w/ this disease it is hard to be assertive w/ docs, but take your time,formulate your questions before your office visit and make your suggestions about what you would like to try. If you run into a roadblock or unwilling MD then it is definitely time to find another. Shooting prayers your way I've been in your shoes and just know you are NOT alone!
              luvnhugs kissing
              IC diagnosed in 2002
              Endometriosis (per gyn)
              Tubal ligation 1992

              Fem Con Fe,Prosed DS, Rescue Instillations,Vicodin (as needed), Valium (as needed),Aloe Vera Caps and Cystoprotek

              Meds tried:
              Elmiron (fuzzy thinking)
              Neurontin (fuzzier thinking)
              Enabalex(bladder felt like a rock)
              Ambien CR (severe flare after one dose)

              Mother of two grown boys, RN ,wife and mother of a golden retriever and a gray tabby
              Antique collector and love a good flea market

              Just trying to find peace in the maddness of my IC world


              • #8
                Thank you all so much for comments and concerns..I have never had peolpe who are as genuinely concerned as you all are...Thanks so much and the prayers help too just knowing that there are people out there who have gone thru this same stuff and can answer my questions really helps....I did get a hold of my Uro's partner,this morning and he thinks I may have a bacterial infection and has called me in a antibiotic to start on and wants me to come see him this week..who knows maybe he is the Uro I need to be seeing..Thanks again and God bless you all..
                Shelia angel