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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 1

MAY HAVE FOUND A CURE- PLEASE READ

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: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4


New Here: Question/My Story

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New Here: Question/My Story

Post  overit14 on Mon Apr 03, 2017 2:00 am

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just hurts. This is only brought on by sexual contact. I never get it otherwise. At least not that I recall unless it was a coincidence with when I happened to be sexually active. I have been tested for STD's til I'm blue in the face. They always come back negative. I'm def not complaining about that. It's so frustrating b/c no one seems to know why it happens and I keep being told it's dermatitis. I have wracked my brain trying to figure it out. It's happened with just receiving oral & finger stimulation. One time it happened only from receiving finger stimulation. It obviously happens with intercourse whether it's protected or unprotected. With my exes we usually started off with protection then stopped once we knew we were only going to be with each other. My last ex it would happen sometimes, and sometimes not. But again, it ONLY comes on with sexual contact. I am experiencing it right now as I type this b/c 2 weeks ago I received oral & finger stimulation only, and then like a week later here it is. That's another thing, it can show up the day after or up to a week or so after. I don't understand that part either.

Last June this happened and I went to my gyno to the have the usual exam and std screening and she actually got annoyed with me thinking I'm paranoid b/c I would want to be tested any time this happened. That upset me of course. Anyway she sent me to a dermatologist who specialized in gynecology. The problem was that by the time I was able to get in to see her my symptoms were gone. Through conversation only, she was perplexed and referred me to a vulvar pain clinic. Well I was too scared to have sex after that last time b/c it hurt so bad so I never went to the vulvar pain clinic b/c I didn't see the point if I didn't have symptoms for them to look at. Fast forward to the present and I finally decided to have a little fun (same guy as last year, we are friends...so he thought we would just try oral and not intercourse and see if it happened again b/c he knows what I went through last year) and now I'm sitting here with my vulva on fire yet again. I'm so over it. It's depressing. I am a sexual person and I love sex. This has made me shy away from dating altogether and I hate the thought this is what will happen any time I have any kind of sexual contact.

Anyone else here that can relate? Any info/advice/encouraging words are appreciated. Thanks for reading.

p.s. My referral to the pain clinic expired last month but I'm calling tomorrow to see if they will see me anyway. Wish me luck.


Last edited by overit14 on Thu Apr 06, 2017 11:49 pm; edited 1 time in total

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Re: New Here: Question/My Story

Post  fairlight10 on Mon Apr 03, 2017 7:20 pm

I am sorry no one has replied to your post. May be they are baffled that you only have problems after sex. I have vulvar vestibulitis since 2012. Before being diagnosed my vulvar was red, burning and the pain was a like I was being cut. Sex was avoided. Sitting was painful and peeing seem to make it burn. I had tests done to rule out any dermatitis. I am now in my 5th year of taking an antidepressent at a low dose. It keeps me comfortable. May be you could suggest trying some medication.

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Re: New Here: Question/My Story

Post  Meggiemay on Mon Apr 03, 2017 11:25 pm

I think I have the same thing. Sex causes my vestibule (more the upper part) area to get red and burn like acid (no itching). It comes on 24-48 hours after sex (or even masturbation) and is continuous . This first happened to me 2 1/2 years ago and continued for 3 months. Sex, then irritation and burning for a few weeks after, then it would heal and I would attempt sex again and start the whole thing over. I went the gyno and she said I had a tiny bit of yeast but it shouldn't be causing that much inflammation, she ended up giving me a Diflucan and telling me to use more lube. Eventually, this all went away on it's own. I was basically pain free for 2 1/2 years, except for 3-4 mini flares lasting a day or so after sex, but now it's back full force. I've been burning and sensitive for a month and a half, and it doesn't seem like it's going away this time. I have a gyno appointment in 3 weeks, but who knows if she'll be able help.

I wish I had answers for you : (

Oh and I forgot to mention, this all started with one sexual encounter where the guy was a little too rough with his fingers : (

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Re: New Here: Question/My Story

Post  Sophia15 on Tue Apr 04, 2017 3:05 pm

Hello I just came back on the site. I haven't been on since December. I would have answered you. I fist have a question for you. Does the burning you are experiencing feel like it is on the outside only? Like the entire vestibule and labia region and colitis. Or is it outside and inside. This sounds like how I started over 16 years ago. At that time I was diagnosed with the broad term of vulvodynia. At that time I was only 28 so I was put through the mill being tested for every STD as well. I was upset about it because I wasn't the type that slept around but did appreciate it too because who knew if my significant other at the time was faithful and to be honest with you I'm still with him today. Really good man. Doctors back then didn't really understand what they were doing as much as they do now. This is my advice to you. Find a doctor who can diagnose you properly. Make sure they take insurance although you will find that most of these doctors don't. One thing I also learned is use your gut. If something doesn't feel right in your gut about the doctor run out the door. I should have done that and my life may be different right now. Try some ice for 15 minutes. To help with the burning. Make sure as to not put it directly on the vagina. You don't want frostbite there. Get a good lubricant for sex without any chemicals. There is one called slippery stuff. I use to use that but I no longer am capable of being physical with my man at this time. I use coconut oil. Organic virgin on the outside it's a solid. Nutiva is a good brand. Some ppl don't like to use it. I feel it helps. Others have thanked me for it too. I keep it in the refrigerator so it gets cold before I put it on and I'm very generous in the amount I use. Take probiotics everyday. Hope that helps some. Your in my prayers. Sophia.

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Thanks :)

Post  overit14 on Thu Apr 06, 2017 11:13 pm

fairlight10 wrote:I am sorry no one has replied to your post. May be they are baffled that you only have problems after sex. I have vulvar  vestibulitis since 2012. Before being diagnosed my vulvar  was red, burning and the pain was a like I was being cut. Sex was avoided. Sitting was painful and peeing seem to make it burn. I had tests done to rule out any dermatitis. I am now in my 5th year of taking an antidepressent at a low dose. It keeps me comfortable. May be you could suggest trying some medication.

Hello. Just wanted to thank you for answering. I am so sorry you are going through this. It sucks so bad. I have thought about taking antidepressants but I have heard so many stories that it makes me hesitant. I will think it about some more though. Thanks again and I hope this goes away for you. I love you

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Thanks :)

Post  overit14 on Thu Apr 06, 2017 11:20 pm

Meggiemay wrote:I think I have the same thing. Sex causes my vestibule (more the upper part) area to get red and burn like acid (no itching). It comes on 24-48 hours after sex (or even masturbation) and is continuous . This first happened to me 2 1/2 years ago and continued for 3 months. Sex, then irritation and burning for a few weeks after, then it would heal and I would attempt sex again and start the whole thing over. I went the gyno and she said I had a tiny bit of yeast but it shouldn't be causing that much inflammation, she ended up giving me a Diflucan and telling me to use more lube. Eventually, this all went away on it's own. I was basically pain free for 2 1/2 years, except for 3-4 mini flares lasting a day or so after sex, but now it's back full force. I've been burning and sensitive for a month and a half, and it doesn't seem like it's going away this time. I have a gyno appointment in 3 weeks, but who knows if she'll be able help.

I wish I had answers for you : (

Oh and I forgot to mention, this all started with one sexual encounter where the guy was a little too rough with his fingers : (

Wow. You sound just like me. I'm so sorry you're dealing with this. It really affects your sex life, self-esteem, feeling sexy, etc. Well let me not speak for you, but it does for me. I hate this. The first time this happened I was red and burning for over a month. And like I said in my post, I was tested for all STD's and they were all negative and every time since they have been negative. I think they tell me dermatitis b/c they have no clue what else it could be. I was able to get an appointment with the vulvar pain clinic in 2 weeks. I am still burning and this started on March 28th. I sure hope your gyno will refer you to a specialist who can maybe get to the bottom of it. Everything you wrote is exactly what I go through. I had one of my worst bouts with fingering alone. So I understand what you mean about that. I was also given Diflucan several times in the past even though I didn't test positive for yeast. It's been horrible to go through. After this clears up I'm not having sex until I meet "the one" b/c going through this with a friend like this past time or just guys I'm dating that I know are not really going to go anywhere is just not worth it. And I'm hoping it will not happen when I do meet that special person. I'll keep you posted on what happens b/c maybe it can help you as well. I love you

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Thanks :)

Post  overit14 on Thu Apr 06, 2017 11:44 pm

Sophia15 wrote:Hello I just came back on the site. I haven't been on since December. I would have answered you. I fist have a question for you. Does the burning you are experiencing feel like it is on the outside only?  Like the entire vestibule and labia region and colitis. Or is it outside and inside. This sounds like how I started over 16 years ago. At that time I was diagnosed with the broad term of vulvodynia. At that time I was only 28 so I was put through the mill being tested for every STD as well. I was upset about it because I wasn't the type that slept around but did appreciate it too because who knew if my significant other at the time was faithful and to be honest with you I'm still with him today. Really good man. Doctors back then didn't really understand what they were doing as much as they do now. This is my advice to you. Find a doctor who can diagnose you properly. Make sure they take insurance although you will find that most of these doctors don't. One thing I also learned is use your gut. If something doesn't feel right in your gut about the doctor run out the door. I should have done that and my life may be different right now. Try some ice for 15 minutes. To help with the burning. Make sure as to not put it directly on the vagina. You don't want frostbite there. Get a good lubricant for sex without any chemicals. There is one called slippery stuff. I use to use that but I no longer am capable of being physical with my man at this time. I use coconut oil. Organic virgin on the outside it's a solid. Nutiva is a good brand. Some ppl don't like to use it. I feel it helps. Others have thanked me for it too. I keep it in the refrigerator so it gets cold before I put it on and I'm very generous in the amount I use.  Take probiotics everyday. Hope that helps some. Your in my prayers. Sophia.

Hi Sophia. Thank you so much for the advice. To answer your question, it is only on the outside, not the inside. I know I have read that a lot of women who experience pain/inflammation in the vulva have painful sex on the inside...I have only had it hurt b/c the skin of the labia gets irritated and it's like the friction makes it hurt. I was told by the dermatologist who specialized in gynecology to get the slippery stuff lube but I couldn't find it anywhere. I am not going to need it now anyway b/c when this burning goes away I'm not having sex with anyone until I meet "the one". Like I replied to the last young lady who responded, I am not going through this with a friend or whatever like I am now. It's not worth it. I hate it so much. It's so painful. I am pain as I write this. I actually have Nutiva coconut oil on my nightstand now. I think I used it before when this happened and it burned some. I have a steroid ointment they prescribed for the pain and I put some on not long ago but it doesn't help much and sometimes it burns really badly as well. I have used ice like you mentioned. I put some ice in a clean washcloth and just put it in my panties and it felt so good. Lol. It was the only thing that gave me relief, but of course the relief was temporary. I did get an appt. with the pain clinic in a few weeks but I'm calling back tomorrow to see if there are any cancellations b/c I need help! I hope they can help me. I'm so sorry you're going through this. I know it is tough. It was hard when I was with my ex b/c it would happen sometimes and then it wouldn't others and I would get scared to have sex with him period b/c of it and he thought I was paranoid sometimes. Oh well. Thanks again for responding. I love you

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Re: New Here: Question/My Story

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