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

Fri May 27, 2016 6:50 am by Lucci


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


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

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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