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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

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

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

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: 4

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

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

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: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

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


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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