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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

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

Heya,

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


I was diagnosed with Vulvodynia at 13 years old.

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I was diagnosed with Vulvodynia at 13 years old.

Post  spencerlily on Wed Jul 06, 2016 8:29 am

My name is Spencer Lily Hastings, and I am 13 years old. I was diagnosed with Vulvodynia about 6 months ago, but have been feeling intense pain since I was about 9 or 10. My condition is pretty bad I suppose. I feel intense pain sometimes without even wearing tight under wear or pants. Mainly I feel pain when I wear shorts or pants with high seams, or any normal underwear. I am unable to wear tampons, and feel tremendous pain even when sitting up straight. I have traveled to other states to see doctors who may be able to help, and am now moving with my family to a huge facility so that I can get "fixed". I am on this website hoping to find others like me so that I may feel more comfortable about myself and my pain.

spencerlily

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Re: I was diagnosed with Vulvodynia at 13 years old.

Post  emalita on Wed Jul 06, 2016 12:28 pm

I'm so sorry to hear that you've been in pain since such a young age. Unfortunately there are far too many ladies with the type of provoked pain that you describe, so you are definitely not alone.

What treatments have you tried so far, and what facility are you seeking treatment at next?

I hope you find relief soon Very Happy

emalita

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My treatments so far

Post  spencerlily on Thu Jul 07, 2016 2:13 am

I have tried many topical and phsycological treatments so far, but my next treatment will be going under anesthesia for steroid shots. I have gone under anesthesia before, and will likely continue for about once a month until some results are seen. I am not sure of the new name of my new facility, but I do know that it is a place where young eurogynocologists study and learn to become doctors in my area, so that they will be able to study some one at such a young age like myself.

spencerlily

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I am cured of Vulvodynia

Post  angelique2016 on Tue Aug 16, 2016 12:32 pm

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 it has the same ingredients, but the ointment protects the skin more when you wee, rather the cream wont stay on as long, but if used just before bed it will mean you will sleep and not have to pee) used sparingly every night only before going to bed, and not to wash to much off in the shower in the morning. (Must not use ointment in the morning, as it will cause more pain due to friction)  I did this for about 3 months, took the Nortriptyline at night before bed and used the ointment at night before bed. This worked, why, because the Nortriptyline, is for pain if taken in low level doses (highly levels are for depression), and makes the brain stop thinking about the pain, as it has now become persistent pain, and the ointment, soothes the skin and it has properties in it to help heal the skin. I have been cured for many years now.  Anyway I stopped posting on here as I was getting abused by people that were not able to get a hold of the medications in other parts of the world. So if anyone is interested in this information, and if you can get these medications, then it will cure you, you will need to do your pelvic floor exercises after you are cured to help strengthen the muscles again, but I hope that this information can help some people out there, as I know how extremely excruciating this problem is, it bought me to tears, and no sleep and could hardly sit, wanted to go to the hospital so many times, I nearly went crazy with the pain, and of course no intercourse what so ever, could barely even wee without pain, had to wear loose clothes, not tight jeans what so ever. I tired everything, so many creams, ointments, lotions, you name it, nothing worked.  It was originally caused by a harsh medicated body wash.  Just use sorbolene or something like that on your body, and dont wash with harsh soaps or body washes.  Just mostly water is fine, and dont sit in hot baths.

So I wish everyone all the best, please dont write back nasty things to me, simply because the medication might not be available in your country, perhaps look for medication that are of a similar nature that will help you, or go onto ebay and buy the cream.  It takes time to heal, 3-6 months but you will get there, just be patient.

Hope this helps you sweetheart you are too young to be suffering like this!  Get well soon.  Do a search in ebay for ADVANTAN-CREAM-15g-OINTMENT-Itching-And-Irritation-Of-The-Skin-in-Eczema it is there, being sold in Germany, and they will ship internationally.

angelique2016

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Re: I was diagnosed with Vulvodynia at 13 years old.

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