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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

Newly diagnosed and shell shocked

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Newly diagnosed and shell shocked

Post  Lindilou on Tue Feb 14, 2012 4:20 pm

Hello, I'm Lindilou, got diagnosed with Vulvodynia yesterday, can't take it all in yet, printed off info, and I'm scheduled for a biopsy next month which I believe rules out underlying skin conditions. Scared rigid I'll scream the walls down when the doctor injects local anaesthetic and that I'll be in agony for weeks afterwards.
How can it not be agonising when it hurts to be prodded with a cotton bud?!
Feel ridiculous, deformed, stupid, and I hate my vagina and wish I could just have it removed. No sex unless I want burning and stabbing pain in clitoris, seams on pants irritate me, sanitary towels irritate me, right now just existing seems to irritate. I hate the fact that the clinic is in the sexual health building so I keep thinking anyone who sees me walk in will assume I've got an STI.
My skin 'splits' at the base entrance of my vagina but apparently I'm deep set so the skin there is a bit web like, can't see how anything can be done to change my anatomy.
I feel angry wretched and stupid stupid stupid.


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Re: Newly diagnosed and shell shocked

Post  ButterflyLiz on Tue Feb 14, 2012 6:35 pm

Hi Lindilou, welcome to the forum. Sorry to hear you are suffering. I remember how it feels to be so overwhelmed with information. Looking on the bright side at least you have managed to receive a diagnosis so you can start to work with your doctors into looking at treatments, and you have found this forum for support. It really is a wealth of info from people who understand what you’re going through.

Again, though, it can be a lot to take in and everyone’s case is different so have a read through at your own pace and see if anything strikes a chord.

We’re always here if you want to ask questions or have a rant. There’s also a “secret” facebook group set up if you’re on there, Naomi on here can add you if you PM her.

You are not alone and there are many things to try which might help you. Sending good wishes your way.

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Re: Newly diagnosed and shell shocked

Post  Lindilou on Tue Feb 14, 2012 7:05 pm

Thank you ButterflyLiz, I'm not on FB, I'm a bit older, I'm ancient lol in my 40's so the technological revolution passed me by, it's amazing I can email..I would very much like to hear from anyone who has had this biopsy under local anaesthetic. What was it like, is it survivable? Did it help?


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Re: Newly diagnosed and shell shocked

Post  Aussie on Wed Feb 15, 2012 4:57 am

Biopsy won't help the situation. If you have vv it will irritate it!

It sounds like you have it to me. If there is no visible change in the skin I doubt a biopsy is required. Doctors just like to test things so they look like they are doing a decent job.

This forum is the best place for info. I would suggest a less invasive test - get your serum (blood) hormone levels tested - ALL of them. See what comes up.

Get proactive about your condition - if you look at it in the right way it can empower you. There are so many things to try and if you don't keep posititive and focused you can really get down in the dumps.

Here if you want to talk (search the celebrating the positive forum) Smile


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Re: Newly diagnosed and shell shocked

Post  Lindilou on Wed Feb 15, 2012 11:04 am

Thanks Aussie this is my increasing feeling


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Re: Newly diagnosed and shell shocked

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