Announcement

Collapse
No announcement yet.

New to site my story

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • New to site my story

    Hi Everyone, This is a very informative site i must say first and foremost I was diagnosed with IC one year ago, Although i am sure i had it for much longer. I also have a very small bladder which makes it even more difficult, I have already had hydro distention/stretching bladder and urethr and that was not very successful, Before beinning diagnosed i tried ditropan and detrol la with no relief and i recently went back to my uro because i have been having insane itching and have had pain with intercourse for years, i have takin numerous treatments for yeast infections and also had my fiance treated but i am still having this itching so i looked up these symptoms and found vulvodynia and presented this to my doctor and he said you may very well have this but brushed it off i am not sure what to do anymore with this ic and all its related conditions that i seem to haveI am very frusturated so hard to find a good doctor, i will be starting elimiron soon when i come back from my honeymoon, I am very nervous to try this as i do not want to lose my hair and i dont like the thought of taking drugs. but its either this or more distention for four weeks dont think i can do that again plus its not in hospital he does it in his office now well if anyone else has been on elimiron with any relief i'd like to hear about it, thanks for listening
    blessings
    Last edited by nclmr23; 05-29-2007, 10:55 AM.

  • #2
    Don't think that hydro or Elmrion are your only treatment options. I do home instillations. Even though they don't work for everyone it is just like any other treament..none of them work for everyone...some work for some people.
    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
    My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

    Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
    I post to encourage and offer total support for rescue instillations.
    Find me on facebook: L. Clark Thomas
    Louann

    Comment


    • #3
      Thanks for reply

      Hi, nice to meet you and i am very weary of doing that its painful and makes me just down right scared, i am glad they work for you if this elimirion doesnt work i will be trying another route possibly i will have to do this.thank you
      blessings

      Comment


      • #4
        Hello and

        Glad you found us..
        This site is great and the people here are very warm and caring. You can learn so much about IC here and alot more things..Have you read the IC patient handbook yet? If not I am giving you the link.. Well if you need anything just let us know

        http://www.ic-network.com/handbook/
        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


        • #5
          Originally posted by nclmr23 View Post
          Hi, nice to meet you and i am very weary of doing that its painful and makes me just down right scared, i am glad they work for you if this elimirion doesnt work i will be trying another route possibly i will have to do this.thank you
          blessings
          That was exactly my feeling in the beginning. I was so nervous and shaking when I was learning how to fill the syringe I thought I was going to stick myself. So you can imagine how apprehensive I was about doing the instillations.

          My urogyne was so reassuring and built my confidence when he told me not to worry that he would help me as long as I wanted help and not to think instills were the only treatment.
          TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
          My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

          Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
          Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
          I post to encourage and offer total support for rescue instillations.
          Find me on facebook: L. Clark Thomas
          Louann

          Comment


          • #6
            hi guys thanks for the support

            Hi, yes i am very happy to find this site , its nice to meet you rhonda thanks for the concern and support .Thanks for the reassurance on the home instills l. thomas maybe i will give that a if the elimirion doesnt help, keeping my hopes up that it will though. blessings

            Comment

            Working...
            X