I Have Vulvar Vestibulitis Syndrome

A Vulvar Vestibulitis Syndrome anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Vulvar Vestibulitis Syndrome. You're not alone. 105 People

    Having a hard time trying to figure out how to

    post to this forum. Have just created this for testing and if this works, I will then post my story. Thank you for understanding.
    kabub kabub
    36-40, F
    2 Responses Jan 13, 2014

    ...well Ok, It's Not Me, But....

    My wife has Vulvar Vestibulitis Syndrome. We have been together for 20 years and of those 20, we rarely have had intercourse. She has given up asking her Gyno's about what it was until we saw a show on TV that described the symptoms and gave it a name. For her the pain...
    another40 another40
    46-50, M
    5 Responses Sep 21, 2010

    Simple Treatment That May Help Vulvar Vestibulitis/vulvodynia

    I have found a simple treatment that seems to have significantly helped my vulvodynia.  I'm wondering if anyone here has tried anything similar and I also wanted to share my experience in case it can help someone else. I suffered for many years from vaginal thrush (yeast...
    kristen104 kristen104
    12 Responses Jun 1, 2010

    Vulvar Vestibulitis..should Have Been a Nun!!!!

    Hi Im Missengland, 27yrs old and live in the UK. My story is that since i became sexually active I have been plagued with Yeast/Thrush infections and also Bacterial Cystitis. Through a lot of research and reading I can seem to control the cystitis by washing throughly ...
    missengland missengland
    5 Responses Aug 14, 2009

    Diagnosed With VVS

    I was recently diagnosed with Vulvar Vestibulitis. I'm not sure how I ended up with this syndrome. There are so many different factors that may or may not of caused it. I'm lost and confused. I feel like no one is listening to me. My pain is bothersome. I've yet to be able to...
    emc2491 emc2491
    22-25, F
    5 Responses Feb 21, 2013

    Newly Married

    ... So...  I am 23 yrs old... and was just diagnosed with vulvar vestibulitis by a gynacologist (7 months married). Never had sex before marriage. My first night was horrific... weeks went on with the hope that the pain would subside ... turned into months... went to my...
    Kristen82 Kristen82
    22-25, F
    13 Responses Feb 28, 2010

    Surgery In One Month

    I have been seeing doctors for the past year. My then boyfriend and I had been unsuccessfully trying to have sex for three years, and I would always get so scared from the pain that I wouldn't want to go through with it. I always thought I had a hard hymen or something, and that...
    blucook blucook
    26-30, F
    1 Response Nov 27, 2013

    I Really Just Need Someone That Knows What I'm Going Through.

    Since my very first sexual experience at age 17 (I'm now 23), I've had pain. For the longest time I thought it was what sex and sexual acts were supposed to feel like. About three years ago I got into a committed relationship and me and him are now married. He was the first one...
    emilyrose11790 emilyrose11790
    3 Responses Jul 12, 2013

    Desparate For Answers

    After seeing six physicians and having been prescribed everything from laxatives to antibiotics, I was diagnosed with Vulvar Pain Syndrome.  I know very little about this condition, it's treatments or causes.  I am hungry for knowledge from anyone who has experienced this...
    bssater1979 bssater1979
    2 Responses Jul 29, 2011

    I Have VVS

    So I started getting bad pain down there when I was 18 & I kept getting told different things by doctors & saw about 30 guinos & uroligists etc & was in so much pain at 1 point felt like it was throbbing & spent the night in a&e. Well after about a year I finally got a diagnosis...
    princesselle princesselle
    26-30, F
    2 Responses Aug 20, 2013


    My story: I was a virgin when I got married with a high sex drive. The pain with sex was excruciating and did not go away as we thought it would. I spent over two years having painful sex. At first they thought I had Vaginismus, but upon self examination, I noticed that my inner...
    Jojer Jojer
    May 4, 2013

    My Pain Is Gone!!! Read My Story:

    My problem is fixed without surgery! Read my story: I also never had sex before I was married. Once we had intercourse I quickly went to the Doctor to complain about so much pain. The Doctor figured we just needed to have more sex. So we did. All the time. And it hurt SOO...
    cutiekins1 cutiekins1
    4 Responses Jun 24, 2011

    I haven't been diagnosed,

    but based on my research, VVS is the closest match to what I'm going through. The first time I had sex I was 17 and everyone said the first time hurts so I didn't think anything of it, but it never got better. I'm now almost 20 and I'm still unable to have intercourse without a...
    Ebay14 Ebay14
    22-25, F
    Oct 8, 2015

    I Have Vvs...or Vulvodynia.. My Mum Refers To It As My 'dynosaur'(because She Thinks That Vulvodynia Sounds Like A Type Of Dynosaur).if It Was A Dynosaur It Would Be A Gyno-sore-us!

    So i will get aound to posting my gyno-sore-us story eventually.. i'm sure it will begin with something akin to the beginning of the movie 'the land before time'.. or maybe its more of a 'jurassic park' story....god knows its involved plenty of terrifting moments and men in white...
    checkerz1 checkerz1
    Feb 4, 2011

    The Vulvar Vestibulitis Cure

    I've had Vulvar Vestibulitis since 2006, I've had no hope for a cure... UNTIL NOW!!!!! I just started Physical Therapy in my area and the treatment is WORKING! It is now proven (according to my gynecologist, physical therapist and TONS of research on the internet) that the...
    Chrity213 Chrity213
    3 Responses Mar 12, 2013

    Vulvar Vestibulitis

    I have seen a therapist a while back as I complained a part of my vagina hurt.  She refered me to a doctor, who ended up telling me I suffer from vestibulitis as when she touched this part it did hurt.  She sent me to a physiotherapist for treatments. Therapy, didn't help...
    Whateverrrrr Whateverrrrr
    36-40, F
    Jan 1, 2011

    Just Finding Out.

    I'm 17 and in an amazing relationship. About a year ago my boyfriend and I began having intercourse. Everything was fine until this past November, I got my first UTI. Nothings been the same since, after the UTI I had a yeast infection and then another yeast infection and then...
    SufferingChels SufferingChels
    22-25, F
    2 Responses Mar 3, 2013

    Newly Diagnosed With VVS, Dealing With Despair

    Hey all, I'm new to this online community, and a little unsure as to how it works, but here goes nothin'... about 2 1/2 months ago (around March 30th, 2013) I started having mild on-and-off itching/tenderness in my vulva, also it was bright red. This was accompanied by lower...
    lauritasnow lauritasnow
    4 Responses Jun 9, 2013

    My Girlfriend

    Hi all, I didn't know where to ask these questions so I thought that this would be a great place to start. Me and my girlfriend started going out when we were 16 and after 2 and a half years we've just broken up, this was for several reasons: •She's off to uni in September...
    Wickham93 Wickham93
    3 Responses May 20, 2012

    Married, With Vv

    I've commented on a couple of stories in this "experience", but I thought I'd share my story as well. I started dating a guy a few years ago, and it was a long-distance relationship for awhile, and it wasn't too serious. Also, I grew up in the Baptist church, which teaches...
    denverite denverite
    22-25, F
    8 Responses Jan 13, 2010

    VVS Syndrome & Vulvodynia Caused By Bartholin Cysts

    I have always had problems with bartholin cysts, usually getting them once a year. After a 3 year remission period, I got a small cyst on my upper vulva. Desperate to get rid of it, I self-medicated with 2xNaproxen whilst on birth control. After the cyst ruptured, although very...
    Janey88 Janey88
    26-30, F
    2 Responses Oct 11, 2013

    Deciding To Have Surgery

    I'm 27 years old and engaged to e married. After suffering with vulvar vestibulitis for 4 years, and trying every treatment under the sun, I have finally made the decision to have surgery. I am having a lot of anxiety about it. I really need advice/words of encouragement and...
    HopefulinHealing HopefulinHealing
    26-30, F
    1 Response Dec 22, 2012

    Stopping Treatments

    I'm 29, and I have known that I have provoked vulvar vestibulitis for 5 years now. I've never been able to come close to having intercourse or having a pap test. I've done Estrace, lidocaine, neurontin, elavil, physiotherapy, cognitive behaviour therapy, dilators, and changes to...
    Claire1984 Claire1984
    26-30, F
    2 Responses May 1, 2013

    Don't Let Vvs Stop You From Having The Athletic Job You Desire

    Hi everyone. I have had this problem as a birth defect in which too many nerves were laid down in my entire reproductive system during my fetal development. That's why a little poke with a q-tip feels like I'm being stabbed with a big knife. I became aware of this problem at...
    ImaTeapot ImaTeapot
    1 Response May 9, 2011

    I'm Not Alone?

    I have been in constant vaginal pain for the last three years. It begun (I think) with birth control. Completely messed up my hormones. It started with yeast and bacterial infections that wouldn't go away for two years. Finally I didn't have an infection anymore but I still had...
    colorlessmoods colorlessmoods
    22-25, F
    4 Responses Sep 15, 2009

    Not A Fun Experience

    I have been suffering with burning and discomfort in the vaginal area since the beginning of March and none of the doctors and nurse practitioners I had seen were able to solve the problem. Strangely, I had been on Vagifem for dryness since December and for a few months it was...
    caningandrush caningandrush
    3 Responses Apr 28, 2013

    I Have

    Hi i am bluecresent I have vvs when i first got the pain i thought it was something bad my ob nurse thought it was my appendix but when i went to the ob he told me i had vvs the pain comes and goes sometimes i get numb which is annoying . I had it now for about 10 years...
    bluecresent bluecresent
    36-40, F
    Jun 9, 2013

    Wondering How To Travel...

    I was diagnosed with VV in May of 2010. I had a vestibulectomy with vaginal advancement performed in Sept of 2010. It was pretty successful. I no longer have 24.7 pain. In fact even after sex I have very low amounts of pain. But sitting still brings terrible pain. The...
    dlknee dlknee
    26-30, F
    1 Response Oct 25, 2012

    Vvs Operation

    Hi everyone. I was searching online for more information about VVS and couldn't believe that other people around my age (26) are having the same problems as I am! I'm recently married and have been with my husband for about 4.5 years now. We have never really been able to have a...
    whandy whandy
    10 Responses Feb 1, 2010
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