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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


overwhelmed with gratitude at finding this forum -here's my story

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overwhelmed with gratitude at finding this forum -here's my story

Post  lauramw on Sat Dec 08, 2012 1:29 pm

hello ladies
my name is laura, i have been suffering from vulvodynia since i was 18, i am now 22 years old. i accidentally stumbled across this forum earlier today and have been so moved and inspired and saddened by reading all of your posts. the isolation of this condition seems unbearable at times and it is such a relief to be able to hear all of your stories and share mine.

i have secondary v, meaning there was a time in my life where i experienced pain free sex. this period was only about 6 months, when i was with my first proper boyfriend. after six months of love and happiness, i got my first UTI infection. this turned into a recurrent thing, where i experienced an infection every 2 weeks or so for a number of months. this was at times excruciating (definitely intensified by drinking white wine and caffeine so avoid these if you have UTI's) but when the infections died down i still continued to have sex with my partner. a few months later, sex suddenly became always painful, to the point that i could no longer do it. it seemed the infections had traumatised the area - has anyone experienced this as the 'cause' for the start of their condition?
i went through unbelievable hell - so many doctors who were complete unsympathetic assholes, close to zero support from family and confusion from friends, my only support was my partner. i came close to losing it with a friend once who exclaimed frustratingly 'oh man i just want to have sex!! its been two months, oh my godddddd'. i wanted to scream, i irrationally hated her, having not slept with my boyfriend for over 18 months out of pure terror for the pain it would cause me.

i was officially diagnosed by a physiotherapist who specialised in vulval conditions, and she has been an amazing support. i was on endep 50mg p/d for 3 and half years until recently where i decided to go off it because the drowsy symptoms drove me completely crazy. i am now on no medication as i desperately want to believe i can heal naturally. i feel like I've tried so many things. i have had periods in my life where i have had mostly pain free sex with partners and felt relatively happy and calm about it, even that it might be getting better.
for the first time since my diagnosis, i am completely single and alone with this condition. now all these new symptoms are arising. i feel itchy, sore and uncomfortable on a daily basis but it isn't thrush or any sort of std. my skin is red and irritated but the pain seems separate to the vulvodynia, like a different problem. i have read bits and pieces about lichen sclerosis and am absolutely terrified that i have that as well, another incurable disease. has anyone experience these sorts of symptoms? some days i can't bear this, it seems like i could cry for hours, get drunk, stoned, do other things i love, be successful in other ways, and yet still i can't get past it.

other days i feel like maybe its all gonna be okay. i want to stay thank you to all the amazing strong women out there. honestly, i feel connected to you all. it is such horror that we have to go through this, it seems so ridiculous.
so pointless.
i live in melbourne, australia. i would love to meet other melbournians out there who have v. thanks for listening.

lauramw

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Re: overwhelmed with gratitude at finding this forum -here's my story

Post  Sarah001 on Sat Dec 08, 2012 2:07 pm

Hi Laura, welcome to our forum! I was going to say to you that UTIs can make the pelvic floor spasm which in turn can cause V but I see later in your post you're seeing a physiotherapist, has she established whether your pelvic floor is tight? As for the itching, some women on here do have it as part of their symptoms and it isn't necessarily a skin condition it can be part of the same problem. You could ask to be referred to a vulval dermatologist through to rule skin conditions out if you're worried. I would guess it's not as you didn't have it when your symptoms started, I would guess it's a natural progression of the original problem. I think alot of women start with a UTI or what feels like one, I started with provoked only which went on for a couple of years and wasn't a big problem for me (it was very mild) then woke up one day feeling like I had a cross between a yeast infection and a UTI. I assume you had your urine checked to confirm it was a UTI on each occasion? Sometimes a tight pelvic floor can give symptoms very close to a UTI when there is no infection present.

I'd be interested to hear what your physio's findings are and how she's treating you, the irritated feeling can easily be part of the pelvic floor picture. If you haven't already I'd advise reading "When Sex Hurts" which is a really good book to establish cause and "Heal Pelvic Pain" by Amy Stein is a good one for the physio angle too. Both are inexpensive and available online.

Anyway welcome!
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Sarah001

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Re: overwhelmed with gratitude at finding this forum -here's my story

Post  Karen818 on Fri Dec 14, 2012 7:43 am

My vulvodyniq began just like yours and just like you I have had periods of great love making, but then it always goes away after a while and the horrid pain comes back and tortures me :/ I don't have support from family because they don't know that I have had sex and my friends have NO idea what my condition is! Sometimes i think to myself what have i done to deserve this Sad I can't afford doctors as I am a young student with a part time job so doctors are unaffordable Sad the only thing I have tried that helps with that irritation specially on my period days when the pad puts my vulva on fire is a cream specially designed for vulvadynia, it's called "neogyn" and it helps, of course doesn't cure but helps, coconut oil is also very soothing try them out...just stay positive and hope that one day there will be a cure to this sad and unfair disorder

Karen818

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Re: overwhelmed with gratitude at finding this forum -here's my story

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