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Not Diagnosed yet but I KNOW I have it!

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  • Not Diagnosed yet but I KNOW I have it!


    Hi Ladies,

    I recently discovered your website after my OB/GYN told me he suspected I have IC. What a wealth of information and support! I am so grateful for all of you and the stories you have shared.

    My name is Maria. I have had bladder issues and yeast issues for years it seems. After I had my son I had a constant UTI/yeast infection. It seemd that month I had one or the other or both.

    Within the last year I have started having very severe pains..only thing I can compare them to are labor contractions. They come at different times of my cycle and the pain is debilitating. I finally saw my OB about the pains and he mentioned IC. I had never heard of this condition. I read the pamphelt he sent me home with about IC and it sounded exactly like me. I am in the middle of a terrible flair right now..going to the bathroom every 30 minutes and in so much pain! It's been 4 days now of agony. I've also been very nauseated (comes and goes) and feeling very panicky. I have panic disorder which I take Paxil, klonopin and Xanax prn for. I have Norco's for my migraines. They don't help very much for the IC flares or the migraines really.

    I am going to my OB/GYN today for a GYN Ultrasound. I am scheduled for a Parson's test next Tuesday. I am leaving for FLorida two days after the Parson's Test for two weeks and am concerned that I will be in agony, suffering away from home the entire time. I am so scared.

    I also battle migraines and have been really struggling in that respect to get any pain relief. Now having this issue to contend with..I don't have much confidence in DR's at all.

    This is all brand new to me and I am really nervous. I'm tired of hurting..I have been on my heating pad 24/7 and hooked up to my tens unit. Please pray for me and any advice any of you can offer would really be appreciated. I always have such a tough time communicating with DR's. I can be an advocate and speak up for everyone else, just not myself.

    God bless you all!
    Photo 313.jpg
    Mimi~

    Currently battling:
    Migraines
    IC
    Panic attacks/Anxiety Disorder


    Current Treatments:
    Pain Meds and Anxiety Meds
    Gentle Physical Therapy
    Yoga
    Heating Pad~my best friend
    Lots of hot baths w/ Epsom Salts & Baking Soda
    Tens Unit
    Prayer

  • #2
    Hello and
    I am so sorry you are going through such a rough time.. You should talk to your doctor about seeing if you can get on something like Elavil or Topamax both will help with migraines and IC pain..This is just a suggestion.. I would talk to the doctor about this..I know the elavil help with both for me but I had to get off elavil due to weight gain..But the Topamax seems to be helping with both and with no weight gain..Well best wishes.. and again welcome..


    Ronda
    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


    • #3
      Welcome Maria!

      I am very sorry your doctor thinks you have IC. I am very glad you found the boards. Hopefully you will find plenty of great support from all of us here! I hope all your testing goes well! Please keep us posted!

      Erika
      IC diagnosed officially via cysto/urodynamics 1/26/07

      Grade II Endometriosis diagnosed via lap 12/11/07

      "Fall down seven times, Stand up eight."

      "Life is a tragedy for those who feel and a comedy for those who think."

      Current Treatments:
      Interstim Since 5/25/07!
      Birth Control

      Comment


      • #4
        Have you talked with your doctor about maybe getting rescue instillations? I am going off Elmiron in less than a week because I am trying to get pregnant and he said that if needed we can do rescue instillations because it goes directly to the bladder. I have also heard of people using this method while they are waiting for the Elmiron to work since sometimes it can take a long time to kick in. I hope you find something that helps! Are you on the IC diet?
        Diagnosed with IC - March 2007
        Diagnosed with vulvodynia - June 2007
        -Lots of prayer
        -Taking Elmiron and Hydroxzine (stoppped because of pregnancy)
        -Taking Prelief as needed (stopped because of pregnancy)
        -IC diet

        Comment


        • #5
          I haven't been eating much at all lately. I've just been feeling so crappy. I have taken all soda, caffeine, aspartame etc out of my diet. I've just been eating really bland, boring stuff which stinks cuz I LOVE food!

          I will ask him about the rescue instillations. I am desperate for some relief.

          Do any of you ladies use probiotics regularly? I used to but ran out and was wondering if they are benficial.
          Mimi~

          Currently battling:
          Migraines
          IC
          Panic attacks/Anxiety Disorder


          Current Treatments:
          Pain Meds and Anxiety Meds
          Gentle Physical Therapy
          Yoga
          Heating Pad~my best friend
          Lots of hot baths w/ Epsom Salts & Baking Soda
          Tens Unit
          Prayer

          Comment


          • #6
            I find that they work really well eps if you have lots of yeat infections..
            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

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