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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

Possible vulvodynia

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Possible vulvodynia

Post  Mixiepie on Fri Feb 08, 2013 7:40 pm

Hi all,

This is my first post and first time talking about this. I was in a sexless relationship for a long time and I'm now dating someone new. We tried to have intercourse and I'd all but forgotten how much it hurts. I couldn't do it and made him stop, which as you all know is just devastating! I've not been diagnosed but I've had this problem for a long time now. I was always too scared to go to the doctors but I don't want to have to live with this.

This forum looks lovely and it's nice to know I'm not alone.


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Post  chilijackie@aol.com on Fri Feb 15, 2013 10:49 pm

Hi. You must go to Doctor who deals with. Many Docs do not even know what it is. Also because it is so hard and time consuming for a Doctor to help, many do not want to. Honestly I saw at least 15 different docs before finding Doctor Trabin.
Ask your pharmisit if they know of any docs. That is how I finally found mine.
Where do you live


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Re: Possible vulvodynia

Post  jen007 on Sat Feb 16, 2013 3:26 am

Hi Mixiepie,

I'd strongly suggest finding a specialist asap. Not treating vulvodynia won't necessarily make it worse, but it's not good to leave untreated. There's a website that you can join that will give you the latest new on vulvodynia studies and a list of specialists near you. You have to pay a yearly fee that gets donated to the NVA to join. I only paid it for one year though just so I could get a list of doctors near me. I'll link it below if you'd like to check it out.


It really is a great resource. I completely understand how you feel. I've been with the same guy for over 5 years now. We met before I even knew I had vulvodynia. When we tried to have sex it was so painful we had to stop. This happened multiple times. I always thought I was just scared of feeling the pain from the first time, but it was more than that. Once you find the right specialist you will feel better. It might take a few tries to find the right doctor for you...it took me about 4 tries to find the right one.

Please keep us posted on your progress! Good luck!



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Re: Possible vulvodynia

Post  Cyndie on Sat Feb 23, 2013 11:09 pm

Hi Mixiepie,

I suggest you find a specialist asap as well. Having vulvodynia is really hard. I've had it for the past for about 4- 41/2 years. It may take a while to find someone, and a few different treatments trying to figure out what will help you. It's like being a guinie pig because vulvodynia is not something doctors have really looked into. So it can be a bit frustrating but here I am 4 1/2 years later still trying to find something. Hope you can find someone to help you soon and don't worrie! your not the only one out there!


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Re: Possible vulvodynia

Post  Kathy100 on Sun Feb 24, 2013 4:27 pm

Hi Mixiepie,

You're definitely not alone. I agree with the other ladies - best to see a Dr as soon as possible. It's difficult to find one who knows about this (I had to see 5 or 6 plus a couple of specialists) but once you do things will start to get better. You just have to keep going which, I know is really hard sometimes. They will need to try different treatments / combination of treatments to find the best one for you. I found a pelvic pain specialist who has experience of V in my area by looking on the internet & then asking my dr to refer me.

Good luck - let us know how you get on xx


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Re: Possible vulvodynia

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