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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

Hi,a newbie here who's at the end of her rope :(

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Hi,a newbie here who's at the end of her rope :(

Post  deprived of sanity on Sun Jul 08, 2012 8:44 am

Hi everyone,
I'm not sure if I even have this but this forum seems like a good place to start. I have had this debilitating condition for 1 year that started off as burning everywhere,now its localised to two areas that range from burn to itch to irritation depending on what day it is,but it is always constant.. Ive had numerous STD checks,spent thousands of dollars on different gyno's.dermo's and other specialists and I still don't have a diagnosis. A recent biopsy after 1 year of dealing with this revealed Lichen Simplex Chronicus but thats about all. I have been suicidal with this condition and the pain associated with it.When i get thrush it makes the situation all the worse. I feel like I never want to have sex again,I've lost any desire for for it.My condition is irritated by excersise,friction,hair growing back there,sweat,sex,any contact Sad
I am dying for the day when I can wake up and not feel vulva pain.Just writing these words is making me cry.It's not something you can discuss nor want to with people.
There's even been implication by gp's that it could be psychosomatic.Are you kidding me?? I'm currently taking antidepressants,steroid tablets and using Advantan Fatty ointment morning and night. I'm not seeing much improvement. Does anyone know of any groups in Brisbane that exist? I'm 36 and feel like I'm going crazy with this.
Is there any hope for people like me?

deprived of sanity

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Join date : 2012-07-08
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Situation similar

Post  jmcmil on Mon Jul 09, 2012 2:57 am

Hello, Oh my gosh..I can totally relate to what you just wrote. I am 36 and will be 37 next month. I have a constant burning down there and everything can aggravate it too, from hair growing back, exercise, walking long distances, wearing underwear, etc..you name it. I was also diagnosed with Lichen Simplex Chronicus, as well as vulvodynia. I don't know the difference and to tell you the truth, I don't think the doctors do either! It has been very frustrating and debilitating. I have had this for 7 months and give up hope all of the time. Today has been a very low day for me because the burn has been worse today for some reason. I constantly don't know how to plan my day because of my pain/burning. I hate wearing clothes. I am on a low dose of Amitryptaline, however when I increased it to 75 mg, it didn't really help so I lowered the dose back down. I like you have spent numerous of dollars on doctors, tests, products, prescriptions, you name it to still be miserable and suffering. I read where you are using Advantan Fatty ointment. What is that? Please don't feel alone and feel free to reach out to me anytime. I'm glad to find someone I can relate to, however pray that we find the relief that we deserve!

Take Care,


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there's always hope

Post  toosore on Thu Jul 12, 2012 11:46 pm

You are certainly not alone - and your problem is not in your head! I can relate to what you are going through - I have the same troubles - bothered by my own pubic hair touching me! And don't even mention peeing and wiping - ouch! I've had this for years and found a few things that help. Amy Stein's book Healing Pelvic Pain is very good - well worth getting. Narcotic pain killers help me, but I limit their use to extreme flares when I feel like death is preferable. I figure then that it's okay to take one pill, rather than the whole bottle! LOL! I use hydromorphone, and I am very sensitive to meds, so the lowest dose of 2 mg is enough to help. I take it with some tylenol and coffee, which helps to increase the pain killing effect and stop the "high" feeling. I was told by the vulvar specialist that I should treat the pain like any other pain condition, with pain medications, such as ibuprofen or tylenol. I find those OTC products too weak now, so I use stonger prescription meds as well. I have found that any kind of cream usually just burns more.

When this condition gets bad, it is life altering. But it doesn't need to be life ending. You need better pain management from your doctor. And do not doubt yourself - it is not a psychological illness - it's psychologically distressing, but not caused by any sort of mental problems. Studies have confirmed this. Hang in there, and keep seeing the doc until you get some relief. Maybe a referral to a pain specialist, if your doc doesn't want to give you anything stronger. Good luck. Hope you find some help soon.


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Post  grassy on Sat Jul 21, 2012 7:53 pm

At one point i was told i had lichen planus. So after googling that, i was totally shocked to read that a couple of blood pressure medicines i was on were known to cause it. One being HCTZ. google your medicines, google the lichen simplex along with any medicines you may be on. It may be a long shot, but what the heck. worth a try. Now a days you never know. cindy


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Re: Hi,a newbie here who's at the end of her rope :(

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