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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

Newly Diagnosed and trying to cope

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Newly Diagnosed and trying to cope

Post  mars215 on Thu Nov 10, 2011 4:09 pm

Hi everybody...

I'm 24 years old, and for the past year I've been dealing with IC. Within the last 2 months, I've also been diagnosed with provoked vulvodynia. Not sure if the vulvodynia was a result of the IC, or if something else caused it... but I'm having a very hard time with the treatment options. They just seem very invasive....creams, suppositories, phys. therapy... and I'm trying to normalize them since they will now be part of my life. But it's very difficult for me.

Does anyone have any advice on how to cope?

Also, has anyone tried decreasing stress and eating low oxalate foods? Has that reduced symptoms at all?



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Re: Newly Diagnosed and trying to cope

Post  Sarah001 on Thu Nov 10, 2011 6:28 pm

Hi and welcome. I think we all just muddle along as best we can, I'm not sure nyone really copes as such. Definitely stick to the physio though as the pelvic floor is a big problem in V and IC. Claire (Aussie) will probably have some words of wisdom for you as she has both too and is doing very well at the moment so she's living proof things can be drastically improved, not quite Australian day time yet though! Have a good browse and see if anything helps you or interests you and although the forum's been a bit quiet recently there are other women with the same problem here to chat to.

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Re: Newly Diagnosed and trying to cope

Post  itchyandscratchy on Tue Nov 15, 2011 11:52 am

Hi mars, sorry but not surprised to hear you're having a difficult time coping right now.

I've never tried a low oxolate diet, I tried a candida diet a while back and found that it didn't have that much effect on my symptoms, for me it's my hormonal cycle and stress levels that have the biggest influence. I would say that making my diet healthier over all (and maybe losing some weight as a result of that) has helped me somewhat.

As far as advice on how to cope, I'm not too sure, when I was first diagnosed I was quite depressed for a while (constantly on verge of tears e.g.) but as I got used to managing it day to day, figured out what I could wear and what I could eat, when in my hormonal cycle I can expect it to get worse, I started feeling a lot better and my mood's pretty much back to normal now.

These sections might be of use to you - Physiotherapy and Biofeedback, Celebrating the Positive.

Hope this is of some help x

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Re: Newly Diagnosed and trying to cope

Post  mars215 on Wed Nov 16, 2011 3:17 am

Thank you Smile I really appreciate both of your comments and kind words.


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Re: Newly Diagnosed and trying to cope

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