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  • Vulvodenia surgery

    Has anyone had surgery for Vulvodenia?? I wasn't sure where to post this. I would like to know if this has been sucessful.

  • #2
    Hi curly

    I have Vulvodynia too and have been advised by doctors not to have surgery for it.

    Neuropathic Pain Medications have helped in the past but are not so effective anymore.

    They would be worth a try for you though.

    I've had this 16 years and am an especially bad case.

    Regards
    Shelley

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    • #3
      shellynz

      I am taking Lyrica for the V. It does help some. I have been trying to research this online. I guess every case is different but, it seems some have been helped by removing Bartholin's glands and /or Skene's glands. Have you taken antibiotics for this conditions?? My started last June--after having several bladder infections. I have tested positive for infection numerous times. However, the antibiotics don't seem to help much and then I get yeast infections.

      Has anything help you????

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      • #4
        I have had Vulvodynia for going on 7 years.. I have had 2 GYNS treat me with this condition.. Both agree using medications like Neurontin or Lyrica, Elavil and diet is the best line of treatment..I have not heard of a sugery for Vulvodynia. Now I have heard of a surgery for Vulvar Vestibulitis. But I do not know if that surgery helps or not. I have not researched it..Maybe someone esle will chime in.
        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.

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        • #5
          Leelee88 and Briza

          Thank you for responding. It seems the three of us visit here, often. Maybe someone will see this and enlighten us. I am sorry that both of you have had to put up with this.........it is awful.

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          • #6
            Vestilbulectomy

            I had a vestibulectomy done in september of 2007 due to my vestibulitis which was localized around my vagina that helped me greatly my recovery was a bit tough I'd say 1month to get somewhat comfortable and a total of 3 mos for me is what it took, I have vulovdyina however that is part of my IC , if you have generalized vulvodyina the surgery may not help.


            take care.

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            • #7
              Mary ann

              Thank you for posting. Yes, I don't know if surgery would help or not. However, I feel I need to look into all options. Could you possible tell me where you went for the surgery and who did it? I would greatly appreciate the info. If you feel you need to--send a private email.
              Thanks,
              Betty

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              • #8
                vestibulectomy

                I live in a suburb of chicago,Il I went to see the very well known Ronald Meltzer for this condition he does so many of these he is top surgeon for this procedure he works out of 2 offices one dowtown chicago,il and also northbrook ,il if you need his phone numbers let him know and you can also mention me also.

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                • #9
                  Mary ann

                  Thank you so much for the information. I am going to try to find someone closer to me, if possible. That would be quite a trip from South Texas.

                  Comment


                  • #10
                    There are different types of v v surgeries, one is the vetibulectomy (removes more like the whole horse shoe portion of it), perineoplasty, and C -plasty. It all depends on the reason why you are having it.
                    Since surgeries are irreversible, it shoudl be left as the last resource. Once you have tried all you could, medications and PT. If nothing works, then itis an option, better than being without an option, right?

                    I've heard great results from it, so if you will have it, after trying the less invasive approaches, don't be afraid to try something that may help your quality of life!

                    But please be patient and try other things first. If you are in square one after 2 years, I'd give surgery a shot.
                    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"

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