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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


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


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

Hello I'm new :)

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Hello I'm new :)

Post  candyD on Tue Apr 03, 2012 9:36 pm

Hey Like a Star @ heaven

I'm really glad I found this forum. You do tend to feel so alone with this condition don’t you? I don’t feel any of my friends or family would understand (and to be fair there’s some things I wouldn’t want to talk to them about) I'm 26 and I've had vulva pain for what must be about four years. I kept thinking it was thrush, constantly. Everything was so dry (it gets worse if I’m stressed). Anyway, that thrush test came back negative and I was referred to a consultant because I get vaginal spasms too. They had to knock me out to do a smear test! Anyway, so I have totally avoided relationships and sex for nearly four years (as I'm sure many of you have). I had an experience before that where the pain was so horrendous penetrative sex was impossible. It was my partner at the time who suggested I visit my GP. Ultimately the relationship didn’t last because of this problem and I felt so embarrassed and ashamed by the whole thing, I’ve given up. I really loved that my partner and I feel this condition robbed me of a great relationship. I mean there’s only so much patience a guy can have, right? My Mother (who really doesn’t understand) thinks that if I meet the right person, it will all magically fix itself Rolling Eyes and he might even come with me to get the problem sorted – meanwhile, in the real world….
Anyway the consultant has suggested that I try loads of moisturising cream in the area, I was prescribed a non-scented one but this isn’t really working. I’m used to having sensitive skin and so I don’t use scented products anyway. The other route he suggested is putting me on pills that normally people who have depression and epilepsy are given. There is NO WAY I am taking those. I’ve heard such bad press about those types of pills and plus he said ‘ooh they only make you a bit drowsy’. Really? A guy I know was like a walking zombie on epilepsy tablets, he couldn’t help it..he needed to take them for his actual problem. Surely there is some other natural way to ease or overcome this? I was thinking of Buddhist pain meditation. I’m going to try the dilators and numbing gel for the spasms and I’m going to have a chat with my GP next Friday about it all. I didn’t feel the consultant was very sympathetic to the problem…certainly not on an emotional level.
Sorry if this post was a big ramble. I didn’t realise how angry I am that the choice seems to be, take these tablets or face a very lonely life.
Does anyone have any advice or similar stories…


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Re: Hello I'm new :)

Post  charly24 on Sat Apr 07, 2012 8:39 pm


I'm Charly! I just joined this evening! Reading your story, it was like reading about me! Its good to know theres a place like this people can share their stories and know your not alone Smile.

I know what you mean about always thinkings its thrush, and then being told your thrush free! I went through a faze of buying pessary and creams like every couple of weeks! Shocked

I am dry too! Its so horrible! I'm only 24! I've tried so many things! Lubricants burn! Although, I have found that Sensilube works well, as it doesn't burn, and you can get that in most chemists and stuff. But its no use if you get spasms. I get those too! And I have recently been given a dilator, so I am hoping it works (fingers crossed). Numbing gel is a good start as it lubes and then numbs it. Just give it a little while to settle in! Its also very runny! lol. Gynaes say I need to RELAX lol. Its hard though when it hurts so bad!

I have used Bio-fem which is useful for comfort, and I often put a few drops of tea tree oil in my bath, as its good for soothing burning pain. I have also put apple cyder vinegar and baking powder in the bath when I am raw, sore and burning. Its unusual what you can put in there, but they can offer relief from pain. I found this on other on-line sites.

I am thinking about trying Yoga and different diets, as I get urinary burning too Crying or Very sad

I hope all goes will with your GP next week Very Happy


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Re: Hello I'm new :)

Post  charly24 on Sat Apr 07, 2012 8:46 pm

P.S. I tried those pills for over a year and they didnt help! I just ended up sleepy all year Crying or Very sad . I was so adamant in not taking them, but I was made to feel like I had no option! I felt like I wasted a year of my life!


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