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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 …

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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 …

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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

looking for someone who knows how I feel

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looking for someone who knows how I feel

Post  Mette on Wed Sep 14, 2011 8:26 pm


I am 24 years old and have had vulvodynia since I was 17. I am on tricyclic antidepressants (for the pain) and have gotten to a place where I can overlook the pain and enjoy having sex with my boyfriend (who I think is incredibly sexy Smile ) But I still have that moment of panic, because I know that it's gonna hurt for some time in the beginning and I don't know for sure if it is gonna be so bad that I will have to push him away.
The other day it occured to me that he doesn't feel any pain at all during sex. I knew this, but somehow the realisation still stunned me. I guess this is my attempt to find someone else in the world, who has the same trouble fully grasping what that would be like.


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So Many Young People Suffering!

Post  Alex on Fri Nov 11, 2011 5:28 pm

I'm stunned to find so many young women suffering from Vulvadynia. How aweful for you and your life. I am 50 yrs old, and not concerned with have sex currently, however, when I went to the derm, she touched me lightly with a Qtip and I almost bucked of the table. I can't imagine having sex. Hope you find relief, and are able to manage this disease. Kind Regards, Alex

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Lots of Young People...

Post  mars215 on Fri Nov 11, 2011 6:57 pm

Hi ladies,

I'm 24 and have been diagnosed with VV and IC. I've been struggling with IC for over a year, and the VV just came about within the last couple of months. Mette, I can totally sympathize with what you and what you're boyfriend are going through. It has been very difficult for me and my partner lately. I haven't been sexually active in months, and it looks like I'm not going to be in the near future. But the good thing is, there are other ways to still have that feeling of intimacy with each other. I'm a big cuddler! And we've been working on our friendship bond too.

I think all the media and Cosmo stuff out there makes it especially hard for young people who have VV. We have these societal pressures to be young and sexy women, but we have a different, and difficult reality in comparison to people who don't have the condition. Sometimes having VV makes me feel like a bad girlfriend, or abnormal young adult... but we can't think in those terms. They are counter-productive, and all we should focus on our positive things to help us get better Smile Your boyfriend may not feel pain during sex, but you're both on the same journey, trying to navigate VV. I wish you guys all the best =D



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Re: looking for someone who knows how I feel

Post  Sarah001 on Fri Nov 11, 2011 9:36 pm

I agree there is alot of pressure surrounding sex, I'm 38 and constantly bombarded with stuff about "being in my sexual prime" when I haven't had sex for over 2 years because of this condition. I actually can't imagine ever having sex again, the meds aren't helping much and I can't even face a pair of jeans never mind the friction of any type of sex. It's easier in one sense not being in a relationship anymore but at the same time impossible to think how I could get into another at any point during the rest of my life.

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Re: looking for someone who knows how I feel

Post  Mette on Sat Nov 12, 2011 9:43 am

thanks for the replies, guys... It really means a lot to me to talk to somebody about this.

I guess I am lucky, because I can actually have sex and enjoy it (if I accept that it is going to hurt for the first 30 seconds or so), it means that I can live with this. I have had times when it wasn't like this, and it made me feel like my life was over.

Mars, I definately relate to feeling like a bad girlfriend. I have such ambivalent feelings when it comes to sex and I feel guilty because I feel like this. I'm working on forgiving myself and getting rid of the guilt. I think, like you say Mars, is to remember that we're in it together. I'm working on letting my boyfriend in on the details of the condition, but it's difficult because the truth is not pleasant.
I guess what I'm working on is putting myself first, eventhough it goes against a lot of what is expected of us as women.


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Re: looking for someone who knows how I feel

Post  kirsty on Tue Nov 29, 2011 7:38 pm

Definitely sympathise with you Mette, I've often wondered about what it must be like to not have any pain during sex (actually, once or twice I've unexpectedly experienced it, and it was a revelation!). It's also hard for b/f to accept that I will have some amount of pain; although we talk about it openly at other times, I don't like to be entirely open about it during sex because if he knows at that moments there's pain he'll just want to stop. Obviously for someone who's never had pain, the idea of knowingly causing pain to your lover is horrendous.


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Re: looking for someone who knows how I feel

Post  Lynn on Wed Nov 30, 2011 12:00 am

Hi, my name is Quelminda and I inherited vulvodynia from my dear old grandmother. I'm 15 years old. (talk about young) No one knows what sexual pressure feels like better than me. I'm in a commited relationship. (I know, the words 15 year old and commited don't usually fall together, but it's a traditional religious thing.) (Also, this may be long, but I read all the responses before mine and I hope you read it all.) The man in my commited relationship (we can call him my husband) is so wonderful, but his friends, and some times mine, often make comments about our "married" sex life and how I should be having sex with him every single day to make him happy.

To add icing to the sexual cake, I have post traumatic stress disorder stemming from a history of sexual abuse.

I love my husband, but even though we both want to be intimate, often times I just can't bear the thought of him touching me for fear of terrible pain and fear of debilitating panic attacks that are damaging to my heart.

I often times wonder if my husband knows exactly how much it hurts me when he asks for sex and I have to say no. (We've only had sex a few times and it was before my vulvodynia) I'm terrified as to what would happen if we tried to have sex now, and every time he asks I wonder if he truly understands the pain I'm in, but I know in my heart that he does. I've found that being open with him about my feelings is far more helpful than just hoping he'll become enlightened. Talking about the emotions that come with the pain helped honestly more than anything I love you


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Re: looking for someone who knows how I feel

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