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    New and need advice and help

    Wed Dec 05, 2018 3:26 pm by Cin124

    Hi everyone,

    About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

    Comments: 3

    I'm new to this forum and would love some advice! :)

    Tue Jun 05, 2018 4:13 am by anikita

    Hi lovely gals!

    I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

    I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

    Comments: 13

    Hello. Happy to have found this group.

    Fri Dec 07, 2018 9:01 pm by foxysugarpants

    I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

    Comments: 0

    Had this for 5 years, looking for people who understand

    Sat Oct 06, 2018 9:46 pm by blackberrie

    Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

    Comments: 3

    Anyone have pain with urination?

    Tue Oct 16, 2018 2:35 pm by mertzwl

    Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

    I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

    Comments: 6

    Diagnosed recently, looking for advice

    Sun Sep 02, 2018 12:51 am by Cloudberry

    Hi everyone,

    I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

    I’m a woman in my late 20s. Before getting diagnosed …

    Comments: 4

    From a concerned husband

    Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

    Hello everyone,

    This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

    I’m sure a lot …

    Comments: 4

    6 year sufferer but I’ve found some hope

    Wed Oct 10, 2018 1:33 am by Npage14

    Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

    Comments: 0

    Hurting, Burning, Itching, and Worn Out

    Thu Aug 09, 2018 10:55 pm by donnambr

    This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

    Comments: 5


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    Post  Licii on Sat Apr 07, 2018 7:01 pm


    I'm new to the forum and I joined in to feel a little bit less lonely in this nightmare. I'm well aware of the fact that there are lots of women struggling with vulvodynia, but I don't really know any, so it feels as if I'm the only one.
    Anyway, my name is Alice, I'm 19 and my vulvodynia started when I was just 17, but worsened a lot when I was 18.
    Luckily I've found a gynaecologist who has lots of patients with vulvodynia and has cured or strongly helped many of them, but so far I haven't yet seen noticeable improvments on myself.
    My burnig pain is pretty strong everyday, all the time, and depression is hitting real hard.
    I was hoping to find someone in my same situation and gain a little comfort from sharing our experiences :/

    Good luck to eveybody out there struggling everyday <3


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    Re: Loneliness

    Post  sophiarp on Wed Apr 11, 2018 11:36 am

    Hey Licii,

    Welcome to the forum - sorry that you have to be here Sad I definitely share your feeling of isolation and have found that my diagnosis has taken a huge toll on my self esteem and mental health. I'm 23 and have had vulvodynia my whole life but only received a diagnosis last year (it's a long story!). You're certainly not alone in feeling this way, even though it feels sometimes like you are. It's so tough being the only one you know with this condition.. I hate having to constantly explain why my legs are cold (because tights and pants hurt!), why I need to sit on a cushion sometimes, why I can't use tampons etc. Tonight at a party my friend asked me if I could have penetrative sex yet. I told him that I can't and that this is a long journey and I don't know if I ever will. He told me that he admired my boyfriend because he (the friend) could never put up with being in a relationship with someone with my condition. It's so depressing, and the constant burning is only a consistent reminder of how bad it feels emotionally.

    Alas, it sounds like you've got a great gyno. It seems to me like treatment is all trial and error, which sucks, but it's nice to have someone on your side who gets it.

    Sending you love!


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