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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

Capsaicin treatment?

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Capsaicin treatment?

Post  bridget234 on Sat Mar 22, 2014 5:18 pm

Hi all! I'm a newbie here. Been having problems for 3 years, diagnosed with VV 2 years ago. I've tried tons of different treatments but my doctor suggested a new one and I was wondering if anyone has ever tried it before?

He suggested using Capsaicin cream on the affected area twice a day to desensitize the nerves. Apparently it is supposed to hurt so bad that your nerves stop feeling pain. If anyone doesn't know what it is, its basically chili powder in cream form (mixed with a few other things, of course).

I tried it for the first time this morning and it hurt soooo bad! I'm not lying when I say that was probably the worst pain I've ever felt. However, it only lasted about 20 minutes.

So, I'm torn. Do I keep doing it and put myself through the pain if I'm not even sure if it will work? Or do I just stop and go to my last option... surgery  Sad 

Have any of you ladies tried the capsaicin before? How did it work out?


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Re: Capsaicin treatment?

Post  nanmark3 on Mon Mar 24, 2014 11:25 pm

I tried Active On which is a capsaicin cream that gives me really for other chronic pain. It actually gives me a lot of relief! The downside though and this is going to sound real gross, but after 2 weeks of using it I started majorly peeling down there. It was if I had a major sunburn. It didn't cause me more pain, but thick sheet of skin peeled off twice from everywhere down there that I had put it. I had used it on my vulva lips and into my groin. So I learned a big lesson we have very sensitive skin down there I wouldn't use capsaicin cream even once again!


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Re: Capsaicin treatment?

Post  Georgia H on Wed Mar 26, 2014 12:37 pm

Interesting... I've just got this from my GP to try as I wanted amitriptyline/ketamine in a compound cream but she can't prescribe it. I've read about some good results on capsaicin so keen to try it - I've not really tried anything topical as yet (only amitriptyline). Research suggests it works well with neuralgia type pain ... Not looking forward to the first few applications though! Interested to know if anyone else has tried it?

My pain isn't VV though, is generalized all over the pubic hair area.

Georgia H

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Re: Capsaicin treatment?

Post  bridget234 on Wed Mar 26, 2014 10:20 pm

I'm only a few days into the treatment but here is what's happened so far:

The first time hurt REALLLLLLY bad! But after that it wasn't as bad, but still pretty painful! The pain doesn't last more than 20-30 mins though.

But I have noticed less burning pain throughout the day! I used to constantly feel it, and now I still do but not as much. My affected area still hurts to touch but I think it may be helping. I am supposed to keep at it for a month before I can actually tell if its working or not.

Let me know how it goes for you!!


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Re: Capsaicin treatment?

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