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  • Vulvar Vestibulitis

    I went to see my gyn yesterday and got the diagnosis of vulvar vestibulitis. Just what I was afraid to hear. And to make it worse I'm the only patient he has with it. He prescribed by Lidex, a steriod, to use twice daily and Lidocaine to use for intercourse. I've used the Lidex only twice and I feel much worse. I'm not going to use it anymore and I'm going to see if I can find a specialist. I'm so scared and upset between this and the IC and I'm not sure what to do.

    I've looked into the low oxalate diet and it eliminates quite a few IC friendly foods. Does anybody here follow the IC and low oxalate diet? If so, could I get a few tips. I have no idea of what I can safely eat. Also, I wanted to try taking the calcium citrate 3x a day, but is it IC friendly to take? I'm feel so lost as to what to do.

    To make things worse, I'm a college student and classes start back up in a few days. I don't know if I'll be able to sit all day. My husband tries to help me out and support me, but I think he's getting frustrated of me crying all the time. I'm so afraid that I'll never be able to comfortably make love to him again. Any advice or support would be greatly appreciated. I've been so very depressed lately, I'm only 24 but I feel like my life is over. I just wish that I could be "normal". I hate not being able to do anything. Please help.

    Chrissy frown

  • #2
    I just found out I have VV a few days ago. But before I found out, what I would do after intercourse is put a cool rag down there to help soothe and cool down. It's a painful disease!

    I haven't looked at the low oxalate diet. I take Elavil 25 mg. at night for Fibro, IC , and now VV. My gyn even suggested using oil (cooking) during intercourse.

    Good luck!

    Hugs and love,
    Jess
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

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    • #3
      I also have this and was told by a doctor in NYC that if you have a problem with stinging and burning on the outside to put vasaline there. It helps so much.
      Ginny

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      • #4
        My doctor prescribed a nystatin cream to use. I was using it every time I went to the bathroom, but now feel much better and only use it as needed.

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        • #5
          Vvs

          Hi ChrissyH,

          I'm so sorry you're going through this! I can totally relate to how you feel... I've VVS for a few years now and have tried a lot of differnet stuff and it would be really difficult to put it all down here. There are other case studies on there as well; I've found that it's really hard to find info on VVS (you might have already noticed this!) but it helps to read about what other people are doing. It helps to know that there are SO many options out there to try!

          As for the low oxalate diet, I did try it (along with the Calcium Citrate) and didn't have much luck with it. Some women swear it helps but I know many other women who found that they felt very tired/lost weight on it. (Like everything with VVS, it seems like what works for one person doesn't always work for another). If you're going to look into diet, I would just keep a log of exactly what you eat so that you can find the food that bothers you. I also had a bit of a problem with the calcium citrate because it made me constipated (even the stuff with magnesium added) and being constipated is really bad for VVS pain.

          One of the best things I've done lately is go to a physical therapist and get my pelvic floor checked out. It seems like a majority of women with VVS have pelvic floor dysfunction. I also got put on a TENS monitor (I have a description of what that is in my case study) which has been incredibly helpful!

          Good luck! Again, so sorry you're going through this!

          Sincerely,

          Alex
          Last edited by ICNDonna; 02-11-2010, 11:57 AM.

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          • #6
            I am closing this thread because it is a thread from 2004..And Chrissy has not been active since 2007
            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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