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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

I'm New and need my fellow V's

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I'm New and need my fellow V's

Post  nanmark3 on Fri Apr 11, 2014 3:16 am

Hi Ladies, I’m so glad to know I’m not alone in this journey! For 24 years I’ve had signs of V, but just here and there.
26 months ago it felt like my body totally turned on me! I had slowly built up to walking 5 miles, so proud of myself! Then my world crashed! **My vulva and inner thighs were so painful and swollen! **My fibromyalgia flared big time! **My painful feet all of the sudden had big, painful lumps in the middle of my arches. **My seborrhea dermatitis erupted all over my face.
So here I was, it was too painful to walk or stand, too painful to sit, too painful to wear panties let alone pants, no more sitting like a lady with my knees together not even in a dress! Sad to say, that’s still my story, though I‘m not still falling apart emotionally.
After various doctors and a lot of research… mine is Generalized V. -constant vulva pain often times into the inner thighs. Painful sex is more common now and dryness, which I use Coconut oil for. Mine stems from 24 yrs. of unresolved hip and pelvis pain, I’m doing 2 treatments that are showing promise and the low oxalate diet. (because with the FM I had IBS for 22 yrs.) which has lessened the extreme V pain by 1/2 so far. My heart goes out to all of you dear women! I hope I'm not going on too long for my intro! Nancy


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Re: I'm New and need my fellow V's

Post  Delilah1 on Fri Apr 11, 2014 9:02 pm

Hello Nancy! Welcome to the forum. You are not alone. There are many wonderful ladies on here. Read through all the posts and I'm sure you will find inspiration, hope and comfort in that we all understand what you are going through. What treatments are you doing that have helped? I too found that coconut oil was helpful. Now I use Crisco which is a little more emollient which makes it last longer.


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Re: I'm New and need my fellow V's

Post  tinkerbelle2 on Fri Apr 11, 2014 9:40 pm

hello Nancy! Sorry to hear you have been suffering too and for so long! I currently can't say anything has substantially helped me.. yet ! Trying to stay hopeful x

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Post  nanmark3 on Sat Apr 12, 2014 1:05 am

Thank you so much for your replies Delilah and Tinkerbelle Smile Yes, I've been reading for weeks, gaining knowledge and strength. Delilah the two therapies that I've started are by the same practitioner, 30 minutes of PRRT (pronounced 'pert') Primal Reflex Release Technique then 30 min. of Bowen Therapy. PRRT because of previous unresolved trauma causing my pelvis and sacrum to constantly rotate out. They are both forms of soft tissue massage but so much more. I'm pleasantly shocked at how powerful they each are! If you look into Bowen at Bowen directory .com thoroughly look into their training, the 2 in my area both had the same title "advanced training" though looking into their schools programs - one had only basic training and mine had the most extensive training at a different school. It's the first time I've had real hope for relief in this old system for so long!!!
The only downside - the very evening after my first treatment I broke out with an extreme rash where my vv connects to my inner thighs. I've never seen anything like it, not painful - since 95% of the time I'm in bed but after Castor oil not clearing it up I tried Fluocinonide until she told me it was my body releasing toxins so not to try to get rid of it but to let it run it's course with natural oil to sooth it. That gave me a lot of peace, I have no doubt that is the most toxic area of my body especially with all of those sharp oxalate crystals and what a big sign of how quickly it's working on my stubborn system. I've had other major signs of their having good work in me too. How good to be able to share therapies and encouragement!!!
xo Nancy


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Re: I'm New and need my fellow V's

Post  Sebby (Admin) on Thu May 08, 2014 1:35 pm

Welcome to the forum  Smile 
Sebby (Admin)

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Re: I'm New and need my fellow V's

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