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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

Hey, I'm new :)

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Hey, I'm new :)

Post  laura9 on Sun Mar 18, 2012 4:53 am

Hello everyone,

I randomly came accross this site when aimlessley searching around the internet ( I can't sleep). I first noticed signs of vulvodynia when i was 15, I took alittle piece of paper to my doctor with 'vulval vestibulitis' written on it when i was 17, got ignored. Took 2 years to go back at 19 and finally got diagnosed at 22, 3 years ago. (many more bits inbetween but thats the basics).

I have so much anger directed towards health professionals (despite being one myself) especially a lady calls margret, who goes under the job description of psycosexual counsellor. Thinking about it is making my hands shake. I attempt to spend every day of my life ignoring my symptons of vulvodynia. I dont feel strong enough to ever go back to a health proessional and discuss my treatment options.

I am trying to take the first step in no longer 'avoiding' by joining this forum (deep breaths) Smile

Thank you all for making me feel like a mentally sane human!! Laura xx


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Join date : 2012-03-18
Location : Manchester, UK

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Re: Hey, I'm new :)

Post  ButterflyLiz on Sun Mar 18, 2012 9:37 am

Hi Laura and welcome!

So glad you have found us! You will find a wealth of information and support here. Well done on taking the first step to journeying out of avoidance.. I have been stuck there many times myself. We all deserve to find relief, and sometimes the best way to do that is continuing the difficult search for helpful doctors, but you will also find several things you can try yourself if you look around the forum.

Unfortunately, dealing with rude, unhelpful and disrespectful medical people is something that most of us are all too familiar with, so you're not alone on that. This is a great place to share, vent and throw around ideas.

Oh, we also have a "secret" facebook group, PM Naomi if you would like to be added.

Liz xx

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I am new too !!

Post  Edina on Sun Mar 18, 2012 4:29 pm

Hi there I am new too. We could keep each other going, I am from the North West too. And in pain everyday now since week before xmas on v low ami at present, back to gynae in just over a week for first follow up. You could try another Dr and see if you have more success. must admit I have had to chase drs and appts and prescriptions. Keep Strong xx


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Re: Hey, I'm new :)

Post  naomi on Tue Mar 20, 2012 3:32 pm

hello! welcome to the forum.

dont be afraid to ask loads of questions...we all do! and educating the 'professionals' about this condition. Dont get me started on 'specialists'...i can feel my blood pressure rise already!!!

if u fancy joining the facebook secret group you are more than welcome, put names to faces. Message me on here if you'd like to. over the past few years I have met girls on here and on the facebook group that I really consider to be close friends...all deserve medals Smile

hopefully you will gain confidence to start the ball rolling and seek help again. and if you find a lady who lives near you and can recommend you a nice specialist, then all the better!



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Re: Hey, I'm new :)

Post  laura9 on Tue Mar 20, 2012 9:17 pm

Thank you so much girls, its reassuring to read that there are actually decent doctors out there somewhere! Edina, I hope your follow up goes okay and your symtoms ease slightly soon xxx


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Re: Hey, I'm new :)

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