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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

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 …

Comments: 10

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 …

Comments: 1

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

Heya,

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


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

overit14

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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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