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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 praying!

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Newly diagnosed and praying!

Post  Lauren. on Wed Feb 15, 2012 4:32 pm

Hi I'm Lauren and a newbie!

I was diagnosed with Vulvodynia about 2 weeks ago and within those 2 weeks I guess I've tried to convince myself that I'm fine, have no pain, and haven't got this condition, which is definitely not the case. I'm so glad that I came across this forum, because it's so comforting to see that other people are going through the exact same thing I am, I thought I was the only one. It’s so refreshing seeing women stand by and advise each other. I've been feeling the burning, aching and irritation symptoms for about 6 months now and am so scared. I never thought that there would be anything wrong with me. I’m scared that I’ll never be cured and won’t be able to feel comfortable in myself again. I’ve tried Aveeno cream, Lidocaine Gel and a numbing cream but I don’t really understand why they give us that seeing as it’s only temporary, it almost builds up your hopes but when the pain comes back it crushes them again. I have physio – therapy in a few weeks so hopefully that will help a lot. If anyone has any tips or anything at all that has remotely helped them please share I would be so so grateful, a day without pain or stress would be bliss!


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Re: Newly diagnosed and praying!

Post  noni on Wed Feb 15, 2012 11:41 pm

Hey Lauren!

So glad we can be here for you. And for one another.

Honestly, the biggest thing for me was acceptance that I have had this condition for 1.5 years now and it took me atleast 8 months to accept that I have this and that I may have to live with it for the rest of my life. Hopefully not, but Im thankful my meds are working and I have minimal pain, most days.

The ladies on here have found things that really work for them:physio, diet modifications, lidocaine, meds...etc etc....its all about whatever works for you, or what combo works for you.

I am on Amitriptyline and I dont experience the nasty side-effects alot of the other women have had with this particular med, such as: drowsiness and becoming ''zombie-like''....

Anyways, welcome!!

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Re: Newly diagnosed and praying!

Post  Lauren. on Thu Feb 16, 2012 10:43 pm

Hey Noni!

Thank you for your reply, it means a lot Smile I know it was literally such a shock, and still is. That's so good that you have reduced pain now, was there anything in particular that helped you the most?

It's such a nuisance that there isn't just one cure, life would be so much simpler! Some days are good but then other days the pain just won't stop, it's constantly on my mind. I feel that it's affecting my emotions as well, usually I'm such an upbeat happy girl, but even reading some of the messages in the forum caused me to well up and cry, I know how silly!

Anyway thank you for your welcome!


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Hi Lauren!!

Post  sadone on Thu Feb 16, 2012 11:13 pm

Hi and welcome!!

You have found a great group of wonderful caring ladies here. I just posted a response, but it didn't take I don't think. Anyway, at the risk of repeating myself lol... I wanted to tell you that Lyrica is a medication that worked well for me (150 mg at bedtime). I also sit on a donut cushion in the car and wear loose clothing. I was burning all the time when this first started 3 years ago, but I'm much better now! I have tried numerous treatments and would be happy to write more if you'd like feel free to msg me. You will get better- it does take time and some trial and error. You're in the right place- this forum is great! Take care and keep us posted and ask away with any questions! Smile


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Re: Newly diagnosed and praying!

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