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» Looking to meet up in LA/OC CA
Yesterday at 3:43 am by crypticcalico

» Vulvadynia
Mon Jul 24, 2017 11:35 pm by Linda Williams

» Just Diagnosed with Vulvadynia
Mon Jul 24, 2017 1:57 am by angelique2016

» Constant pain, I want to die.
Sat Jul 22, 2017 9:41 pm by Meggiemay

» What is Vulvodynia?
Sat Jul 22, 2017 9:21 pm by mary jane

» Will I ever be able to wear jeans?
Wed Jul 19, 2017 11:02 pm by jungleclover

» Looking for a friend IRL; LA/OC
Wed Jul 19, 2017 10:58 pm by jungleclover

» Anyone else get this from yeast infections? (new member)
Wed Jul 19, 2017 10:37 pm by jungleclover

» Owner of vulvodyniSuppoet.com
Wed Jul 19, 2017 10:28 pm by LaurenVV


Fri Jul 21, 2017 11:53 pm by Linda Williams

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These …

Comments: 4

Just Diagnosed with Vulvadynia

Tue Aug 02, 2016 9:11 pm by CherryTree23

Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case …

Comments: 7

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: 21

Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico


I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

Comments: 1

Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

Comments: 0

anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

Comments: 6

Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

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: 1

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: 12

Looking for Someone to Listen

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Looking for Someone to Listen

Post  Trying on Mon Aug 08, 2011 6:27 am

Hello everyone,

I've been searching online for some sort of vulval pain support group since I don't have any friends or family who want to talk with me about my vulvodynia, which is what the doctors have said I have. It's getting to be too much to handle on my own, and my ex-boyfriend of 3 years did not know what to do to help me either. I feel very alone and hopeless.

Since I first had my period when I was 14, I cried whenever I tried to put in a tampon. My sister/mother laughed at me, saying I must just "have the wrong hole". Ashamed and embarrased, I have avoided using tampons unless absolutely necessary, and have never once had a pain-free tampon insertion. However, I don't have any pain unless a specific area is touched, so I suppose I'm lucky compared to some women who have pain all the time. (Although "lucky" is a relative term.) Razz

10 years later, I saw numerous doctors after trying to have sex multiple times, with it ending quickly with nothing but pain and tears. A geneicologist finally told me I have vulvodynia, and for 2 years now I have tried numbing creams, antidepressants, acupuncture, and physical therapy, but to no avail. All methods seem to relieve about maybe 10-20% of the pain only, which is on a scale of about 8/10. This means I still can't have sex - all I feel is pain, no pleasure at all. My ex-boyfriend, who wanted a sexual side to our relationship, couldn't understand my problem. He tried to be very gentle and caring, but I just had no desire whatsoever, because everything ended in pain for me. We tried seeing a counsellor and trying alternative ways to be intimate, but in the end he needed my vagina to be a part of things or it just wasn't good enough. I never really had much of a sex drive before this, but now I dread the thought of anything and feel resentment and anger.

So after 3 years, I have broken up with him because I just can't take the torture anymore - trying to please him while not wanting anything and feeling constantly pressured to try again - because "this time it might be good". He's asked how he can help, and I don't know. Not having a sexual relationship doesn't seem like something any guy would agree to. All I know is that I feel extremely alone and hurt.

To add to this physical problem, it also doesn't help that at about the age of 16 I learned that my father is addicted to pornography, and my parents divorced. We had been a very loving, happy family before this - but afterwards it ended in ugly arguments and a broken home. My poor mother just couldn't take my father's lies and false promises anymore. That shattered my once-good relationship with my father, who chose pornography over his family. Since then, I have had a strong distrust of men as being controlled by their physical desires. Although this distrust started after my original discovery that I could not insert a tampon, I'm sure this mental issue doesn't help my physical one. Although it's definitely hard - sometimes I wonder if it's just all in my head, that I'm mad at men and I've done this to myself with my negative thinking. My boyfriend has told me to just relax more and maybe it'd be fine. It's heartbreaking. I hope it's not just in my head, but who knows.

So, this is where I am: feeling alone and depressed and like a complete freak. Breaking up with the man I love because I can't take the pain and guilt and anger and resentment and arguing anymore. No one seems to understand how I feel or what I'm going through.
I guess I hope by posting on this site I can finally find someone who can understand what I'm going through. Even if there's no advice, it'd be nice to know I'm not alone in my suffering.

Thanks for listening,


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Re: Looking for Someone to Listen

Post  Sarah001 on Mon Aug 08, 2011 12:08 pm

Hi and welcome. I think you should read a copy of "When Sex Hurts" which lists all the reasons for vulvar pain. As yours started from first tampon use it sounds like you might have a genetic overgrowth of nerve endings in the area which I believe they would use lidocaine on plus dilator work to get used to penetration slowly and of course pelvic floor therapy if those muscles are tight. It's a very good book that removes the mystery behind the useless non-diagnosis of "vulvodynia". Have you tried lidocaine at all? Also not all physiotherapy is created equal so it may be you didn't get to do the things you needed before, it really depends what your PT involved. There could well be a psychological element not just because of your recent family issues but also because your sister and mother laughed at your inability to use tampons so there could be some tensing up involved because of how worried you were about it with no input from family. I would start with that book though and see if there are treatments listed in there you haven't tried and go from there.

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Re: Looking for Someone to Listen

Post  Mouse on Tue Aug 09, 2011 10:31 am

Hi and welcome. How very brave telling your amazing story. I'm really sorry you have had so much pain and incredibly sad that your relationship ended.

It sounds like you have been searching for answers without a lot of support. When you say you have had counselling, do you have a supportive relationship now? For a lot of us that's the one relationship that helps the most. Have you been completely honest with your Mother and sister? This is a really difficult condition to cope with alone maybe you could try to gather some support from your family. There's a lot of information on vulvodynia available now maybe you could offer them some research to read. Do any of your friends know? Could your ex become a friend or is that too hard?

Unfortunately there are a lot of women on this site around your age who they are facing the same issues. Between us we've tried most things and we've got a lot of advice. I think Sarah's suggestion is great, reading and researching is a great place to start. I'm fairly big on lifestyle changes. Taking good care of yourself, making dietary changes (yes I mean sugar), exercise (if you can), face time with favourite people, good sleep, time in the sun, meditation, a supportive relationship with a therapist - anything really that nurtures you.

Good luck Very Happy


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Re: Looking for Someone to Listen

Post  Trying on Mon Sep 05, 2011 7:52 am

Thanks for the advice ladies.
I picked up a copy of "When Sex Hurts" and it is indeed an info-packed and very new, up-to-date book. I'm still reading through it, but it's nice to know that at least some doctors care about this issue and are working towards researching and understanding it more!

I've also made an appointment to talk with a sex therapist. There's only one licensed practicioner in my city, and it costs a whopping $170/hour! Even with my health insurance, I'll still be paying $120/hour, ouch. I'm still paying off student loans and don't have a lot of money, so it's pricey. I know it's important and health is worth the time and effort, but still.... Sad

Anyhow, hopefully the psychologist I see in a few weeks has some new input and ideas for me to try. I might also try some physiotherapy with a centre that's supposed to be familiar with vulvodynia. But again, the issue of location and cost make it difficult to squeeze into a busy/low-income schedule. I guess I just have to try and be positive and hope that there are small investments into becoming healthier.


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Re: Looking for Someone to Listen

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