Vestibulitis Member Introductions

Please take a moment to introduce yourself to the community. Everyone here has something to share about Vestibulitis. For the discussion boards, we ask that you keep your full name and location private.

Just looking to connect with others managing with their diagnosis of vestibulitis…

Hi all, I suffer from primary VVS and would like to share my experience and learn from others.


I have been living with vestibulitis for almost 10years and it helps to be in contact with others with this condition.

I have been diagnosed with Vulvadynia Vestibulitis and have found no support groups at all in my community. I have suffered for more than a year. I need to communicate with others who also have this condition

i was just diagnosed with it… want to speak with people who have it

I have been living with VVS for three years and I would like to get advice from others.

after many years of being plagued and embarressed it is great to be able to discuss such issues anonymously . vulvular itching and burning has caused scratching leading to bleeding for years. history of mild psoriasis in these areasand in nails. possibly starting menopause. history of hypothyroid, adult acne, gi symptoms, thin hair, . not as bad as it sounds, but never any real answers. also have asymmetry in thighs, looks like karote chop on lateral aspect of each thigh, one more prominent than other. ugly! never heard one explanation, very self conscious, any one else on the planet with this stuff?

Hi, I was wondering if there was anyone who might be able to help me. I’ve been experiencing a painful vulvar itch that seems to be associated with a watery discharge and I don’t know what is causing it! I have had similar problems before and my doctor finds nothing wrong with me, but I’m just miserable. Does anyone know what this might be? Am I nuts? Do I need to find a new doctor?

Hi there,

I’ve had have Vulvar Vestibulitis for about a year and a half following a yeast infection that got things inflamed. In February I also I reacted to a medication I was giving for a very mild case of urethritis and developed full-blown Interstitial Cystitis. I’m 23 and working on keeping a full life despite my pain. I work full time on a fellowship at the National Institutes of Health, I dance and am currently choreographing a commissioned piece for a local dance company.
I also have a twin sister (we don’t know if we’re identical or not) who does not have either of these conditions.

v vestibulitis. Who else has it and what are their stories

I have been dealing with urinary urgency, frequency and burning - with no infections found since my first UTI back in March. No blood, no bacteria, no sugar in my urine and I have normal urine in my bladder after elimination. I am not sure what to do or where to go next.

I am 56 and have had vulvoydnia since March 1998. That was a very bad month for me and I remember it well! I have a very understanding and compassionate family doctor and she was a very big help sending me to different specialists to try and find out what was wrong with me. I have developed chronic pain syndrome with this condition, degenatitve disc disease, insomnia and osteoarthritis. I’m not sure what I want from this forum except to talk to people that know what I am going through and understand.
Thanks for listening

Hi, I have been going through this for 35 yrs now and would like to know if anyone has any answers out there.

thank you

My daughter was diagnosed and I want to find out more about this condition.

I think I have vulvular vericouse veins, i just need some infomation on causes and treatments, really would like to see a picture to confirm what i am suffering with

I was diagnosed with vulvodynia in June 2005 and Interstitial Cystitis in March 2006

Hi, I have vulvar vestibulitis and was wondering if others experience what I am going through. I am seeking information and need a sounding board at times at my friends and family do not understand this.


I have VVS and it’s horrible. I’m sick of being in pain, finding something that works for a while and ending up in horrible pain again. The mental anguish is very damaging! I’ve never known anyone else with this problem, and I, like many others I have seen tons of doctors… and only 2 knew what I had. I guess I’d just like some support, and any ideas of what has worked for others.