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» First post and recommendations for acupuncture in the UK?
Wed Apr 19, 2017 9:28 am by pr3ston

» Does Vulvodynia affect your sexual partner?
Mon Apr 17, 2017 9:48 pm by amyhp

» Internal anal fissures and VVS, somebody kill me please!
Sat Apr 15, 2017 4:04 pm by Kezz

» Wife with Vulvadynia scheduled for surgery
Thu Apr 13, 2017 7:39 pm by amyhp

» Male visitor
Tue Apr 11, 2017 8:56 pm by emalita

» New member
Mon Apr 10, 2017 4:08 pm by Lisa1627

» Don't let Vulvodynia win. You are so much stronger than you realize!!!
Thu Apr 06, 2017 11:54 pm by overit14

» New Here: Question/My Story
Thu Apr 06, 2017 11:44 pm by overit14

» Post Vestibulectomy: Any tips
Tue Apr 04, 2017 10:43 pm by SummerMalone

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 2

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

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 …

Comments: 6

New to the group

Fri Mar 17, 2017 9:52 pm by canuck girl

Hi Everyone
I found the site tonight, and am so pleased I did, I hadn't realised it was such  a problem, and I for one am grateful that the group exists. I recently had a really awful , well the worst one I had ever had UTI, after 4 days of antibiotics it should have cleared though. i now had this awful feeling, and sensations, very sore, burning, some strange sensations I have  that  are hard …

Comments: 1

How do you live with this?

Wed Feb 22, 2017 12:15 am by Persevere1990

Hi everyone,

It's great to see there is a support network here... I was diagnosed a few weeks ago and have started nightly treatment with lidocaine cream one week ago. Not noticing any difference yet.

I notice I get flare ups throughout the day, typically after peeing, showering, walking and when I'm stressed. I'm pretty sure my vulvodynia was caused by nerve damage due to a bad case of thrush …

Comments: 4

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: 9

Has anyone tried Reflexology as a treatment

Wed Nov 30, 2016 8:54 pm by Roselilyflower

Hi there everyone, I was diagnosed with vulvodynia about 5 months ago. It all started as an allergic reaction to some thrush cream I used to treat a yeast infection which I got agter a heafty load of antibiotics. I have been tested umteen times for herpes etc and I am all clear which is reassuring but still depressing as Inwas not sure what the hell was going on, then finally I was given an …

Comments: 3

I just found this site tonight

Mon Feb 20, 2017 8:35 am by surprisemom44

Hello all,

I just found this site tonight. I am on my fourth round of antibiotics in a row since Nov. But honestly, have been having the pain, itching, burning for years. I had never heard of this condition until tonight and have not been diagnosed but I feel it has to be what I have. I had my first encounter with burning, itching, pain when I was 12! My mom tried to get me to douche! I had …

Comments: 1

Pain following a vaginal cyst procedure a year ago.

Sat Feb 11, 2017 11:22 pm by crackleberry

Hi everyone, I'm sorry this is going to be long, but please listen and help if you can. I am a 17 year old girl. In february of 2016 I had a mass protruding from my vagina, I went to the er, they didn't know what kind of cyst it was but they did an incision and drainage and put a word catheter in to help the cyst drain. During the procedure I had a sharp pain from where she cut me, but once it …

Comments: 0


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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