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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

Vulvodynia my whole life & Vestibulectomy results

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Vulvodynia my whole life & Vestibulectomy results

Post  nola218 on Sun Apr 05, 2015 4:42 am

Greetings from upstate NY...

I feel like an expert on the subject of Vulvodynia. So much so, that I have had doctors admit to me that I know more about it than them. I'm sure a lot of you have seen this. So little is know about this in the medical world that it can become very frustrating to find answers.

I'm 30 years old. Ever since I lost my virginity at the age of 17, I have had vaginal pain. I thought maybe the first time was supposed to hurt, but when it continued hurting, I knew something was wrong. I saw endless amounts of doctors. I had endless amounts of failed relationships, heartbreak, men leaving me, ridiculing me, and feelings of no self worth. I tried every solution in the book...physical therapy, antidepressants, estrogen, lidocaine, amitryptiline, home remedies, biofeedback, pelvic floor exercises, dilators, botox, gabapentin...I could go on and on. No one could figure out what caused this, as everything physically looked fine. I developed severe depression and anxiety and was eventually diagnosed with Bipolar II disorder. I would be in a state of depression but would then lash out at people and experience extreme anger when something would trigger my sexual frustration. I learned to hate all things sexual. Even hugging or kissing would lead to feelings of fear, because those things could lead to sex.

Sex felt like someone was pouring acid into a cut and rubbing it in with their hand. For years I would let men have sex with me because they either made me feel like it was owed to them, that I was being a horrible person for withholding it, or I'd just have fear of them leaving me. I'd bite my lip and hold back the tears as much as I could while they were thrusting into me and I was in horrifying amounts of pain. I'd go to the bathroom afterwards and collapse on the floor in pain while sobbing. I wondered why I put myself through that, and why men continued to be ok with having sex with someone who obviously wasn't enjoying it. I had plenty of people tell me it was all in my head, or that I just hadn't been with the right person. Surely if I had sex with them, it would be enjoyable. It never was. It still never is. I have never experienced pleasurable sex, or even neutral, non-painful sex. I have no idea what it's like.

Last year I had a breakthrough in treatment prospects. I saw the right combination of doctors who specialized in vulvar pain disorders. This February I had a full vestibulectomy. I have not had intercourse since the surgery as I am still healing, but I have high hopes. When I touch the affected area now, I do not feel pain. I was used to feeling immense pain even when I lightly touched the area.

If this ends up working, I still have a long road ahead of me. I have post-traumatic stress from everything I've been through, and I have no sex drive, as I've learned to hate sex. I don't even like physical affection at all. I shy away from people touching me, and am very withdrawn in general.

I wanted to share my story so other women know that there are others out there who are struggling...and I am here to talk to you if you need someone. I know what it's like to feel so alone, as you can't talk about this with just anyone. Women learn to hide their sexual problems because society tells them to. I've been through it all...and chances are I can at least provide some advice, or just an ear to listen.

I have a blog that I have started recently on my post-op progess but am unable to post the link here. Message me if you would like to follow it.

Life is short, and every woman deserves the ability to enjoy physical pleasure...


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Re: Vulvodynia my whole life & Vestibulectomy results

Post  emmy on Wed Jul 01, 2015 10:34 pm

Hello from Indianapolis!

I relate to your story so much. I have been dealing with vestibulitis since I lost my virginity at 18 years old. Like you I thought the pain was "normal" because everyone told me that the first time hurt. I have been told the same things by doctors such as, "It's in your head." "You just need to relax." I've let men have sex with me because I felt like I had no other option. Leaving me in pain and feeling used after every time.

I am now 23 years old and after 5 years of countless doctors, I found a specialist and traveled to DC for surgery. I am now 5 weeks post op from a full vestibulectomy. As I'm sure you can relate, it has been an emotional rollercoaster with good days and bad. My friends are great but they do not understand the emotional toll this takes on someone. Thank you for sharing your story. It helps to be able to talk to others who understand.


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