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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


    Worsening vulvodynia, only 21

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    Worsening vulvodynia, only 21

    Post  katj21 on Sun Jul 05, 2015 6:05 pm

    Hello - bit of a long one. I'm 21, from the UK and was first diagnosed with vulvodynia at 18. I had previously had what I think was something like Chronic Fatigue Syndrome (exhaustion, nausea, muscle pain and skin soreness on and off, worsening over my last 3 years of school but doctors never gave me a diagnosis as I wasn't severe enough). I had this and recurring thrush before my vulvodynia started so I wonder if it was linked to either of these. It came on as very severe and sharp pain on touch and the doctor told me I had vulvodynia which I was really upset about, googling it when I got home the words 'no cure' sure jumped out at me. This was around August and the pain continued until I went travelling the next May, within the first week the pain disappeared (vitamin D from the sun? salt from the sea? using natural travel shampoo instead of chemical? lack of stress? trust me I've racked my brain about this). After about a month it began to feel uncomfortable and sore but this was nothing compared to it feeling like knives. Then since just after Christmas the awful sharp pain is back and worse, this time it's not only painful but has been swelling up like big blisters when I have touched to check pain (which goes down after some hours/overnight) and in the last couple weeks have felt burning pain even when not being touched.

    I'm trying to eat a very strict alkaline diet as I've read about the body working at its optimum state on an alkaline diet. I add coconut oil to my smoothies in the morning, take plenty of vitamins and minerals, have been doing epsom salt baths this week. I'm trying hard but I can't help but feel like I don't have a clue what I'm doing. My alkaline diet contradicts things i've read about a low oxalate diet helping, as spinach (which I'm eating a lot of as its so alkaline) is apparently high in oxalates. I also don't know how often or how long I should try the epsom baths or whether to switch to baking soda baths as this may apparently help? I've read about the healing powers of raw food diets, about why you shouldn't eat any raw food, the acidity of meat and fish and eggs, but candida problems requiring you to cut out all fruits and sugars. Whatever I follow in the end feels like a guess, I just don't have a clue what I'm doing and I hadn't realised how much comfort food was helping me through the day because now I'm only eating rabbit food I find myself getting more and more depressed.

    Is anyone young and afraid of never having a relationship/normal life?? Or depressed because you feel like you're trying hard but truly don't know what you're doing?? There's women who have dealt with this for a LOT longer so I know I'm lucky but it's knowing that it might not go that's scaring me. I don't feel like a normal young person.

    katj21

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    Re: Worsening vulvodynia, only 21

    Post  Funchik93 on Mon Jul 13, 2015 10:58 pm

    Hi, my name's Fany, I'm 21yo Smile
    I entered your message and wanted to offer my support as being of the same age suffering from a similar condition..
    I've had my vestibulities diagnosed at 19 (when I first started having regular intercourse). I know for a fact that I've had it at least since I was 17 - because that was the first and only time I tried sex before I became 19 and also because I've always had problems and pain putting in tampons and wearing skinny jeans.
    I'm only telling you all of this to try to show you you are not alone - I also struggle with feelings of "not being normal", especially with having a boyfriend for the past 2 years (who is a bit older than me and had been sexualy active before we started dating). I dealt with depression and I also felt like I'm broken and can't be repaired...
    What I wanted to tell you, referring to the last part of your message - you are a normal young person. Many people suffer from various problems, at least our condition has a solution and treatments Smile I went with the biofeedback at first. Unfortunately, with my vestibulities (I've got a pretty severe one - a lot like you described, but also not being able to sit at times and the thing with tampons, skinny jeans and of course - painful sex) This didn't work and I decided to have the vestibulectomy surgery. I'm currently recovering from it, day 16 post op. Trying to stay positive! Smile
    I'm not saying you have to have surgery to deal with vulvodinya, it's a personal decision, but I wanted to give you my insight as a young person going through the same issue.
    I believe you can have a normal life and I've proven to myself that you can have a great relationship even with this problem - you just have to find the right and understanding partner. To me, this condition taught me that a relationship can be based on love and support, even at a very young age.
    I hope I was able to send you a little bit of optimism and I send you the very best wishes!
    P.s: sorry if my English is not perfect, I'm not a native speaker Smile

    Funchik93

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    Age : 24

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