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    I'M NEW - Do I listen to my gyno who I feel has it wrong?

    Fri Mar 09, 2018 6:17 pm by Tunes25


    I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

    To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

    Comments: 1

    I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

    Mon Mar 12, 2018 4:33 pm by totallycured


    Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

    Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

    Comments: 1

    Recently Diagnosed which has motivated my research study

    Tue Mar 06, 2018 4:54 pm by ebclose2free

    Hi everyone,

    My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

    Comments: 0


    Thu Feb 15, 2018 10:04 pm by infinitelywondering

    Dear all,

    Today has been the day I've been waiting for. The day something FINALLY makes sense.
    I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

    after having a vestibulectomy with no success, I decided to visit …

    Comments: 3

    New and desperate for advice

    Sat Mar 03, 2018 2:37 pm by srbry

    Hi everyone,

    I'm new here and was told to find a support group because this is all getting a bit much really...

    I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

    Comments: 3

    New and need some help

    Wed Feb 21, 2018 4:30 pm by LindafromNJ

    New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

    Comments: 9

    Amitriptyline given for vulvodyina pain

    Tue Oct 24, 2017 2:46 pm by katycrawford

    Hi there,

    After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

    Comments: 12

    Can A Cut In Vestibule cause Vulvodynia?

    Thu Mar 01, 2018 1:07 am by rockylife

    Can a cut in the vestibule area cause vulvodynia? Is it possible that some nerve a were damaged that’s why I feel this pain in my area without visible lesions?

    Comments: 0

    Anyone from New Jersey

    Thu Feb 22, 2018 10:47 pm by LindafromNJ

    Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

    Comments: 3

    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.


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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


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