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    Do you ever worry that you're making it up?

    Fri May 27, 2016 6:50 am by Lucci

    Hello,

    I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

    A few years into treatment, I had the diagnosis of PTSD added on for …

    Comments: 7

    Clitoris Issues

    Tue Apr 28, 2015 8:17 pm by January

    I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

    Comments: 2

    Cured of Vulvodynia

    Wed Aug 17, 2016 1:39 am by angelique2016

    I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

    Comments: 10

    Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

    Sun Jul 30, 2017 1:03 am by Carolyn4

    Hi everyone,

    I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

    Comments: 1

    Partial Vestibulectomy

    Mon Jul 31, 2017 6:44 pm by JGD13

    Hi all i am new here.
    I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
    After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

    Comments: 6

    Post Vestibulectomy

    Thu Aug 03, 2017 6:15 pm by infinitelywondering

    Heya,

    I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

    However, today I came home and have done the following things:

    -washed with warm water
    -applied manuka honey to the area
    -ensured I wash at least 3 times a day and dab the area dry gently
    -use frozen peas to stop the swelling

    As of now I am …

    Comments: 1

    New w/ Secondary Provoked Vestibuldynia

    Wed Apr 26, 2017 11:46 pm by Birdy

    Hi everyone,

    I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

    Comments: 3

    Anyone from the PNW?

    Sat Aug 05, 2017 7:54 am by jungleclover

    I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

    Comments: 0

    Constant pain, I want to die.

    Fri Jun 02, 2017 4:29 am by Meggiemay

    I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

    For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

    Comments: 22


    Diagnosing Vulvodynia

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    Diagnosing Vulvodynia

    Post  amh521 on Thu Apr 09, 2015 12:06 am

    Does anyone know if it's possible to definitively diagnose vulvodynia? From what I have read, it seems like doctors arrive on vulvodynia when tests for all other infections/skin diseases come back negative. I have yet to be diagnosed, but after all the research I've done, I firmly believe this is what it is.

    After 7 months of stinging and itching, I had a vulvar biopsy last week. It hurt a LOT and a week later, I am 99% recovered. I'm also on my second week of a low dose antidepressant, but I haven't seen a real improvement yet. My doctor says I'll probably get the biopsy test results back in another week, but I still don't really know what those results could possibly say. I would love to just get this diagnosis, because I've read that getting diagnosed with vulvodynia can be half the battle.

    I am at a total loss. I definitely have moments where I feel like this is just what my life is going to be like. I'm sure a lot of people feel this way - you're just tired of thinking and talking about your vagina! A year ago, I never gave my vagina any thought, and now I think about it nonstop, every day.

    Thanks for any help anyone can offer.

    amh521

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    Re: Diagnosing Vulvodynia

    Post  jen007 on Tue Apr 14, 2015 7:32 pm

    Hi amh521,

    I was diagnosed around 2012 by a vulvodynia specialist. There is no sure fire way to diagnose vulvodynia. You can't take a test that will definitively say you have vulvodynia. It's when you've tried it all and nothing seems to work pretty much. I had gone thru quite a few doctors before anyone could give me an answer. I had to do most of the research myself because no one really knew what to do with me. This is because vulvodynia is not a widely known disorder even though many women suffer with it. Also, it depends on where you are from. I think being is the U.S it's a little easier to find a specialist. I've read about a lot of women in other countries who struggle to find the proper care.

    I never had a biopsy or anything like that. I had done every swab test imaginable and blood tests with no results accept for chronic yeast infections - some how tied to my vulvodynia. Every woman is different. Different things work for different people/ bodies. Some women use medications that actually help them, some use homeopathic remedies that help and others, like myself, have surgery - aka a vestibulectomy.

    Sometimes it feels like you're stuck in a maze. Vulvodynia is a confusing disorder. No one knows exactly why it happens to people or 100% what causes it. One day, hopefully, there will be better treatments for it. As for now we all have to find what works for us. I was once where you were, constantly thinking why and how. At one point I just had to stop thinking and start doing. I did all the research I could and found the proper support system. This site really helped me thru those dark times.

    I hope this was helpful!

    -Jen

    jen007

    Posts : 151
    Join date : 2012-11-05
    Age : 25
    Location : U.S.A

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