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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 am new, and am looking forward for some support

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Hello I am new, and am looking forward for some support

Post  Feegal on Sat May 12, 2012 11:21 am

Hello wow, ( I feel soo silly for years I have had this pain for soo long, originally I thought I had vaginismus) for all those years talk more soon not feeling well wil write more later sorry all. I cant wait to connect with you al and explain my story to you all how its effecting myself & my husband soo not fun thats for sure. Sad

I feel I had vaginismus for years, but really didnt know what I had, & why was soo painful all the gyno exams, every time we had sex soo painful and frustrating, could never use tampons soo painful. I now am soo happy to actually find out what i really had, my gyno told me about a a really good therapist in Adelaide, his names marek Jantos.
At this stage, have only seen him once, he also does myofacial release too its amazing at what he does, afer i had some internal stuff done that day, found out how inner thigh pain can radiate up to that area, also buttock pain can do that too. I am not happy atm, as bleeding its just not a good time to get back into doing them. Where is everyone else re with this, any support any help will help me out soo much, just needing anyones feedback anything to help me though this makes it soo much better knowing a freind heard of this forum.
I feel i hve had this for years, but never knew it. I have anxiety too, we also went through ivf also, and unfortunately didnt work out. That was back when i didnt know about the vulvodynia just thought I had vaginismus.


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Re: Hello I am new, and am looking forward for some support

Post  sailirish23 on Sat May 12, 2012 9:42 pm


I'm new too. I didnt know anything about vulodynia until my symptoms appearred three months ago. If you would like to share some thoughts, let me know.



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Vaginismus diagnosis

Post  vulvarpainsurvivor on Sun May 13, 2012 12:52 am

Hi Folks,
Just wanted to comment that although I am not among those people who thinks "vaginismus" is a myth, I do want to emphasize that a lot of different types of vulvar pain get unhelpfully lumped under that diagnosis when it is not necessarily correct, or not comprehensive enough. I spent several years thinking I had vaginismus, too, when it turned out to be a (probably) congenital overgrowth of nerve endings in the vestibule. The result--extremely painful sex--is the same, so it's easy to be fooled into thinking your muscles are just too tight or you're getting tense when you have sex. And then there are the doctors who tell you to "just relax," as if you could relax when you're in severe pain.

When I started the physical therapy which I though would cure me of my "vaginismus," I eventually figured out that the tension or relaxation of my pelvic muscles had nothing to do with my pain. I used a biofeedback machine with a vaginal probe which showed whether or not my muscles were "firing." (The machine is available from Empi, by the way.) The higher the number, the higher the tension in the muscles and vice versa. I found that I could have a 0 or 1 showing on the machine and still have severe pain when touched at the opening of the vagina. So while the physical therapy did not solve anything in the end, it was very useful for getting me to try biofeedback, which helped me figure out that tension was *not* the problem. And, as a bonus, I did learn how to control those muscles really well, and probably strengthened them--good for your sex life in the long run!


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Re: Hello I am new, and am looking forward for some support

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