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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

Hello, my name is medical mystery

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Hello, my name is medical mystery

Post  coline83 on Sun Sep 19, 2010 1:08 pm

Hello everyone,

my name is Coline and I've been suffering from vulvar pain for 7 years, on and off. I had many diagnosis but for the past 3 years, it seems that doctors ran out of ideas. My current gynecologist made me do blood tests, I had a PAP test and everything looks perfect! There seems to be absolutely no reason that could explain my constant burning and stinging/itching on different areas of my vulva. So my doctor said, and I quote: "I don't know what to do with you". I was treated for yeast at least a hundred times, I was told I had genital warts, which was probably true but couldn't explain the intensity of the symptoms. And now, the warts are gone and the symptoms are still here. Funny enough, they can disappear for a moment when I'm sexually aroused but they come back soon after. If I'm lucky. If I'm not, I just won't be able to have sex. The pain has been present for a year now but before that I had a one-year break. Before the one-year break, it was slightly annoying but ok. Before that, it was one or two weeks per month. And now we're back to that and I can't think of anything (psychological or situational) that could have triggered this. I tried to stop going to the pool once a week, I tried to change my diet, I tried to stop biking, nothing changes.

Several doctors heard my story and admitted they didn't know what I had but refused to look further and just sent me back home. I have an appointment coming at a specialized clinic (VUVO for vulvo-vaginal disease) in Montreal, where I live, in december. In the meantime, I tried acupuncture to release the pain but the treatment actually suppressed all sensation in my vulva, which is even more disturbing than the pain cause now I feel numb and unable to be aroused. I stopped the treatment and just hope it will come back soon.

I read the V book and I found my symptoms to be very similar to what she described as vulvodynia ( gynecological exams really hurt, I can't use tampons, etc...) but as long as I'm not diagnosed, I'll get no treatment.
Does my story sound familiar to anyone? Am i crazy to think it could be vulvodynia? Does anyone know a specialist in or around Montreal?
My apology for this way-too-long post...

To end on a positive note, my fiance is very understanding and involved in my quest for an answer so I have plenty of support from him. Looking at the bright side....

Thanks to you all

Coline I love you


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Re: Hello, my name is medical mystery

Post  Husband on Sun Sep 19, 2010 3:58 pm

Hi Coline,
Sounds like vulvodynia. Can you provoke pain by a slight touch with a cotton swab? If this caused pain and if the doctors have no ideas any more than you have the diseases name.


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Re: Hello, my name is medical mystery

Post  Sarah001 on Sun Sep 19, 2010 5:26 pm

Hi Coline, it certainly sounds like vulvodynia but it would do because that just means "pain in the vulva"! It's quite interesting acupuncture made the area numb, I'd say that points to at least partly a musculoskeletal problem and perhaps over time more acupuncture might help restore normal sensation? I haven't tried it myself but it seems pretty hopeful that it changed the sensation. The other thing that springs to mind is an overabundance of lactobacilli, it's not common but tends to present in a pattern of a couple of weeks a month where there's pain. Not many doctors think to look for too much good bacteria but it can upset the balance just as easily as not enough good bacteria. Have you ever had antibiotics and found the problem improves while you're on them?

Anyway, welcome to the forum.

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Re: Hello, my name is medical mystery

Post  Sebby (Admin) on Mon Sep 20, 2010 7:13 pm

Hi and welcome coline

It does sound like Vulvodynia which as previously said does just mean pain in the vulva!

How did they treat your warts? I have read in the vulvodynia survival guide by Dr Glazer that the treatment for warts have been shown to "irritate the vestibular are futher" ...Trichloroacetic acid (TCA) and lazer surgery. but it is not thought that the HPV virus itself is linked to developing Vulvodynia.

Sebby (Admin)

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Re: Hello, my name is medical mystery

Post  jules on Tue Sep 21, 2010 2:49 am

Hi Coline,

Read our stories....you have very similar symptoms. Also, I suggest you read the support and advice section. We all share different treatment techniques we have used. Many of us are on medication, ie: Amitrip., Lyrica, neurontin, vicodin (for pain) etc. some have tried physical therapy, spinal blocks, acupuncture (like yourself), botox, etc. There are a number of treatments for this nerve pain. you will also want to rule out a skin disorder w/ a biopsy. It sure does sounds like Vulvodynia. I live in Minnesota. So, I don't know of a doctor in Montreal. But, it sounds like you are heading in the right direction. In my opinion, you may benefit by going on meds for the nerve pain and then physical therapy for the pelvic wall muscles. Good luck. We are here for you.


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Re: Hello, my name is medical mystery

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