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Just Diagnosed With Vulvodynia

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  • Just Diagnosed With Vulvodynia

    I was diagnosed with vulvodynia yesterday. The doctor wants me to do bio-feedback. Has anyone tried that? He said there is about an 80% improvement rate with the bio-feedback. I think I will be trained to do it at home.
    Miss Bessie

    Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

    Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

    Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

  • #2
    Never heard of that.. Please let me know what it is...
    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
      I don't know too much about it yet. I think they insert a small probe into the vagina and it measures the muscle activity. I am in the process of trying to set up my appointment to get started. I really hope that whatever it is that it will help.
      Miss Bessie

      Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

      Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

      Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

      Comment


      • #4
        Octoberfarm, I'm sorry you have V V ... I tried biofeedback but I couldn;t do it b/c I was having repeated yeast infection and it was not possible to do it while having yeast. I'll give it a try again but I'm so irritated that I don't want to put anything there. My dr also said biofeedback helps. I had an excellent P therapist in the Womans Hospital but my chronic yeast interfered with the treatement and now the isnurance won't cover anymore. Howver I leaverned how to do it and if I can I'll do it myself at home.
        Yeast caused my V V , waht do you think caused yours?
        Are you going to the IC conference on April 21st?
        Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
        UTIs since mid 2004
        Recurrent yeast infections since mid 2005
        IC dx 3/2006
        V V dx 12/2006
        Other conditions: IBS, allergies, dry eyes.


        Current IC medications:
        Elavil (since 12/06) 10 mg;
        Cysta Q (since 5/07)
        Rephresh acid jel every 3 days
        D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
        Probiotics Femdophilus or other brands
        Gy-Na-Tren for yeast infections (started using it as needed since 2010)
        Other Rx:Omeprazole 20mg; benadryl as needed, Restasis


        Past Meds and why I stopped them:
        Elmiron: March to September 2006: headaches
        Lyrica:2 weeks in 2006: headaches
        Cystoprotek: from Jan to April 2007: nausea

        Femcon Fe (2/07 to 10/07):caused spotting/bleeding
        BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.


        "Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"

        Comment


        • #5
          SMR,

          I am not sure what caused my vulvodynia but since I had my last ovary removed 3 years ago I have had 24/7 pain. I was misdiagnosed at first with nerve damage and then after being treated for that I had surgery to remove adhesions and my surgeon told me my bladder was very small, mis-shaped and had ridges and sent me to a urologist. I had the hydrodistention done and was dx with IC. My urologist did an exam on me and sent me to the vulvoydina doctor because he felt I also had it. I have not started the bio-feedback yet but hope to soon. I am going to the conference. Are you going?
          Miss Bessie

          Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

          Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

          Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

          Comment


          • #6
            Yes, I'm going to the conference, we should talk earlier to meet there.
            I also took some valium for a few days but made me very sleepy. I take Elavil too I was tking 15 mg and now I will lower it again to 10 mg b/c is giving me eye pain. Gee...wee..
            I just need to get the yeast under control and all will follow. For me, that's the major cause of VV and of course the nerve damage from bladder pain and yeast infections. I wonder how else one can heal the nerves...or help wioth this, a natural way... not so many drugs and so many side effects...
            Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
            UTIs since mid 2004
            Recurrent yeast infections since mid 2005
            IC dx 3/2006
            V V dx 12/2006
            Other conditions: IBS, allergies, dry eyes.


            Current IC medications:
            Elavil (since 12/06) 10 mg;
            Cysta Q (since 5/07)
            Rephresh acid jel every 3 days
            D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
            Probiotics Femdophilus or other brands
            Gy-Na-Tren for yeast infections (started using it as needed since 2010)
            Other Rx:Omeprazole 20mg; benadryl as needed, Restasis


            Past Meds and why I stopped them:
            Elmiron: March to September 2006: headaches
            Lyrica:2 weeks in 2006: headaches
            Cystoprotek: from Jan to April 2007: nausea

            Femcon Fe (2/07 to 10/07):caused spotting/bleeding
            BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.


            "Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"

            Comment


            • #7
              That is something that I wish..."that my yeast problem will heal on its own".
              Maybe I should repeat that everyday or something.
              I have hope that it'll to that point. Now when I have yeast is not like before, when I used to have lots of discharge. Now the discharge is very minimal so I'm thinking I'm heading to that direction as long as nothing else interferes like "antibiotics" ( I don't even want to think of them b/c I freak out)
              The porblem is that now, even with the minimal yeast overgrowth my skin and nerves react to it b/c of the damage yeast has caused...
              Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
              UTIs since mid 2004
              Recurrent yeast infections since mid 2005
              IC dx 3/2006
              V V dx 12/2006
              Other conditions: IBS, allergies, dry eyes.


              Current IC medications:
              Elavil (since 12/06) 10 mg;
              Cysta Q (since 5/07)
              Rephresh acid jel every 3 days
              D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
              Probiotics Femdophilus or other brands
              Gy-Na-Tren for yeast infections (started using it as needed since 2010)
              Other Rx:Omeprazole 20mg; benadryl as needed, Restasis


              Past Meds and why I stopped them:
              Elmiron: March to September 2006: headaches
              Lyrica:2 weeks in 2006: headaches
              Cystoprotek: from Jan to April 2007: nausea

              Femcon Fe (2/07 to 10/07):caused spotting/bleeding
              BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.


              "Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"

              Comment


              • #8
                Briza, a few questions:
                Where you taking Valium only at bedtime or a few times a day?
                where you taking it along with Elavil?
                Do you work?
                I just tried valium for a few days (4 ) . 2.5 mg at bedtime. I weight 100 lb. I don't kno wif it helped or not. I will talk to my doctor and see if we do it for longer. But it really makes me sleepy and can't function well at work in the mornings I found myself making stupid erros already...

                Sometimes I don't know if I have yeast ir is just V V . When I get tested at the docotrs' office lately they are not seeing yeast anymore. I DO have it though right before my period. So I take diflucan to prevent it.
                The doctor experct in V V who saw me twice is on vacation now and I have an appointment Pril 10th I can wait to get back from that visit with a plan. Now I've been seen by a back up gyno who gave me th evaloum and Clobetasol ointment, I'll use it for 2 weeks, I'll start trying tonight since I just finish my period.
                Laser cervical surgery after abnormal pap (moderate dysplasia) in 3/2004
                UTIs since mid 2004
                Recurrent yeast infections since mid 2005
                IC dx 3/2006
                V V dx 12/2006
                Other conditions: IBS, allergies, dry eyes.


                Current IC medications:
                Elavil (since 12/06) 10 mg;
                Cysta Q (since 5/07)
                Rephresh acid jel every 3 days
                D-mannose, fish oil, Calcium Citrate, Multivitamins & garlic pills (sometimes)
                Probiotics Femdophilus or other brands
                Gy-Na-Tren for yeast infections (started using it as needed since 2010)
                Other Rx:Omeprazole 20mg; benadryl as needed, Restasis


                Past Meds and why I stopped them:
                Elmiron: March to September 2006: headaches
                Lyrica:2 weeks in 2006: headaches
                Cystoprotek: from Jan to April 2007: nausea

                Femcon Fe (2/07 to 10/07):caused spotting/bleeding
                BCP:Loestrin (since Ocotber 2007) to stop spotting for 2 months. V V worse. Stopped the pill in Nov 07.


                "Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it"

                Comment


                • #9
                  Octoberfarm-
                  Yes, I am doing biofeedback as well (for PFDm but I also have VV that flares up when the PFD does)

                  It's going pretty well so far. My muscle tone is much better now than it was when I started nearly 2 months ago (6.4 now down into the high 2's).
                  For me, controlling muscle tension is key to controlling vulvodynia symptoms and Ic symptoms. I'm doing 5 minutes of kegels a day at home too, but I just now started this "home care". She wanted to make sure I wouldn't be doing it wrong and make it worse first. I'm also trying Estrace (estrogen cream). We'll see how all this pans out...
                  Diagnosed with IC: October 2006

                  Related diagnoses: PFD, chronic back pain, vulvodynia, IBS, anxiety.

                  Treatment:
                  Lots of water
                  Fiber, when I can remember...
                  Elmiron (I'm down to 200mg per day)
                  Kegels (10 sets of 10 second holds per day)
                  Yoga and Pilates, each weekly
                  Exercise 3x weekly

                  Have tried:
                  PT for PFD and chronic back pain (VERY helpful)
                  IC diet (I'm not diet-sensitive while on Elmiron)

                  Comment


                  • #10
                    Re I C and Vulvodynia

                    I find tea tree oil undiluted, applied directily to the vulva and urethra area offer me relief along with natural estrogen cream that I buy in the health food store...I'm sure that soaking in a mini bath with lots of hydrogen peroxide bath, helps...the mini bath is achieved with using a dish like bucket...I'm also using very high intake of glucosamine, chondroitan blend with hyloronic acid which is apparently what the gag layer of our bladders are made of...
                    all the best to all of you

                    Lucy

                    Comment

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