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Vulvodynia

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  • radstudent
    replied
    Glad that you are gtting some relief.

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  • raeray
    replied
    I found out on my own what Vulvodynia was...told my gynecologists (one retired, another took his patients), and they didn't seem to register it. Even though I went in to see them often because of the pain, they didn't offer me anything for it. It wasn't until another patient of my 2nd gyn had similar symptoms that he looked further and found out about IC.

    A nurse once told me about an A&D personal care ointment for bladder leakage. That worked FANTASTICALLY but for some reason the company has discontinued making it. I've researched and can't find an internet connection to the company that distributed it (Schering-Plough Healthcare Products, Inc) It was distributed by them in Memphis, TN. I would like to connect with someone in the company and ask them to start making it again - and market it to IC/Vulvodynia patients. I would appreciate any leads that anyone could give me!

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  • poetgirl
    replied
    My gynecologist put me on 25mg of Elavil and it made a huge difference for my vulvodynia.

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  • kiffy313
    replied
    classics,
    I do hope your Dr. visit goes well. I am trying to get my ic under control, my ibs, which is now "acting up" and the vulvodynia (which I did not know even had a "name", I just know I hurt...Good luck to you, and let us know how it goes.
    Kif

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  • classics
    replied
    In my last post I mentioned I missed my Dec. period. Well, I had my period on Jan 3rd. It was 57 days late. The flow was very heavy but today (Tuesday) the flow is almost gone. I'm still burning and still think I might have volvodynia. Tomorrow I'm seeing a brand new doctor. Hopefully this one will give me something for pain.

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  • raeray
    replied
    I'm perimenopausal...and I have more flares of vulvodynia and ic during hormone shifts. I take provera the last 10 days of the month to regulate my period. I notice flares mostly then. Prelief helps a lot. So can barefoot calcium - which also has calcium + magnesium. And believe it or not, vitamins help. I'm not sure why.
    I usually try a glass of milk with 2 barefoot calcium.

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  • classics
    replied
    Could someone give me more information about vulvodynia? I'm experiencing urethra burning that is constant, and though it seems to have irritated my bladder, it only burns a little when I start to pee, (all urine tests negative). I'm also urinating about every 45 minutes if I'm drinking lots of fluids, otherwise I can wait around two hours.

    I can sleep all night I'm almost symptom free while sleeping, though I do notice some spasms in the urethra when going to sleep. Rest seems to help me and I feel pretty good early in the day but the burning increases thoughout the day. Some days aren't as burny as others.

    I also had my last period in early November (no December) so, I may be starting menapause.

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  • ICNJess
    replied
    That's a great med, I used to take 10 mg. of it at nightime for my Fibromyalgia. Glad it's working so well for you.

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  • Ginny
    started a topic Vulvodynia

    Vulvodynia

    A few months ago I saw a GYN in NYC for Vulvodynia. He prescribed Flexeril 5 mgs at bedtime. It has helped so much. I don't have the day to day pain and burning. Certain times of the month I have a problem so I asked him if I could increase it to 10 mgs and he agreed. I started that last week. I'm tired but I can't tell you how much it has helped.
    If you want info on the doctor email me privately.
    Ginny
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