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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

Young and not sure how to handle this???

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Young and not sure how to handle this???

Post  cdt2010 on Sun May 06, 2012 5:08 am

Hello all! I normally do not get on these kind of things, but I don't know where else to turn. I have Lupus, which is what they say caused my vulvodynia. I have known about my vulvodynia for about six months and I have known about my Lupus for one year. I am twenty years old, and my family has no idea. I have tried everything I can think of. The gynocolgist (might not have spelled that right) did not give me many pointers, unfortunantly, I have been to her many times for my discomfort, and it wasn't till I was extremely irritated and they remembered that I had Lupus that they took me seriously. Even though, I can stand having sex it's not for long. I can wear tampons, but it hurts at times. Please someone, can anyone give me advice on what I can use that will help, they have me on estrace cream, but that only does so much. Is there a soap or anything!? Please any advice will be accepted. Sorry for the bluntness, I do know however there are probably many people who have it worse then me.


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Join date : 2012-05-06
Age : 26
Location : Mississippi

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Re: Young and not sure how to handle this???

Post  Loulou on Mon May 21, 2012 10:28 pm

Hi there

You say you have tried everything - does this include the more obvious things to relieve immediate pain/discomfort? e.g. seam-free cotton (or no) knickers, NO SOAP only water or aqueous cream to wash your vulva, cool packs and lidocaine gel for numbing.

Beyond that there are a number of different treatment routes - accupuncture, physiotherapy, drugs (anti-depressants, anti-convulsants), low oxolate diet to name the main ones. There is lots of info here in this forum about these and women's experience with them. Unfortunately there's no quick fix, its trial and error to find what works for you so you really need to find another specialist who knows more about vvd and is willing to work with you to find some answers (this is the holy grail for all us vvd sufferers).

Hope you can find some relief soon.


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