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Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
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» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
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» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0


Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3

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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