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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 …

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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


Is this Vulvodynia!?!

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Is this Vulvodynia!?!

Post  VaxilRae on Wed Aug 31, 2011 6:50 am

Hi guys!

I am so glad I found somewhere who might be able to tell what these strange symptoms might be!
I'd like to share my story, I apologize if I get graphic, I will try not too bad.

The first time I ever experience 'the burning sensation' it lasted for 6 hours but never came back.

I started on the Micronor mini pill, and after taking it for two weeks, one day after removing a tampon, it was like my entire vulva was burning with pain! I dont know how to describe it except similar to maybe an insect bite, that warm burning sensation. The only thing that made it feel better was peeing and not wiping afterwards.

It eventually went away, but now every single week, at least 3-5 times a week I will get this same burning sensation in my vestibule area!
It's not muscles, I can have sex normally and use tampons fine, its like the skin at the opening of my vagina and labia minor just BURN with pain. Sometimes I bath takes it away, other times a bag of ice between my thighs, and at the last attempt taking a narcotic pain killer.

I've been STD tested and I am completely free, no infection, no BV.....its very hard to get to the doctor to check this because I cant just go in when it happens mostly in the evenings and disappears within an hour two.

Is this vulvodynia or something else?

VaxilRae

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Re: Is this Vulvodynia!?!

Post  VaxilRae on Wed Aug 31, 2011 6:53 am

One other thing, vagisil or other yeast infections products use to help me a bit, but Im not kiddiing now they only increase the burning!

VaxilRae

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Re: Is this Vulvodynia!?!

Post  Sarah001 on Wed Aug 31, 2011 12:45 pm

It is vulvodynia because that just literally means "pain in the vulva" but it's important to attempt to figure out what causes it, as it comes and goes it might be an idea to write down everything you do, eat, put near the area so you can figure out if there's a common factor that could be causing it.
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Re: Is this Vulvodynia!?!

Post  mmorgan on Wed Aug 31, 2011 1:58 pm

Have you changed your laundry detergent? Try switching to something without fragrance or dyes.
What soap do you wash with when you bathe? Try just plain water or Dove hypoallergenic.
Does it burn every time when you wear tampons? You could be allergic to the kind you are using.

Like said above write down everything your eating, food can play a role in the dreaded sensation.
Orange juice increases my burning sensation from a 2 to an 8.

Hope to hear back from you.
Very Happy
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Advice

Post  Aussie on Tue Sep 06, 2011 1:19 am

Get off the pill and get your hormones tested.

My pain is way, way better off the pill. I am awating a baseline hormone test (saliva) to see where I am at. The pill screws with your oestrogen and testosterone, this can in theory cause problems with the skin of the vulva.

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Re: Is this Vulvodynia!?!

Post  VaxilRae on Tue Sep 06, 2011 7:50 pm

Thanks for the replies guys!

I went off the pill MONTHS ago, and my burning does not seem to be related to laundry detergent or tampon usage at all. When I am burning tampons are painful to use, but they themselves do not cause it by my observation Neutral

The only thing I've noticed that relates to it, is peeing! 70% of the time the burning starts is after I pee, wipe, and flush. I have no STDs or infections, vaginal or urethral.

I am so frustrated I have been needing to take more and more narcotics to get rid of the pain!

VaxilRae

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Re: Is this Vulvodynia!?!

Post  mmorgan on Tue Sep 06, 2011 7:58 pm

I have noticed that with mine as well. I feel completely normal when I sleep but as soon as I do my morning void the sensation awakes. Try keeping a food diary and see which foods could be causing this.
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Bicarb Soada

Post  Aussie on Tue Sep 06, 2011 11:56 pm

Your morning urine is the most acidic. Try drinking one t spoon of bicarb soada in a glass of water it will alkalise your urine. Follow the IC diet on the IC Network. If the urine burns then alkalising it is the best bet.

Hope this helps.

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Re: Is this Vulvodynia!?!

Post  VaxilRae on Wed Sep 07, 2011 4:14 pm

what is so confusing is why does it not always happen? Like I mentioned a high percentage of the time is does, but not all the time. Why does the burning last for so darned long after peeing? Even washing off with water doesnt help. I still burn!

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Re: Is this Vulvodynia!?!

Post  mmorgan on Wed Sep 07, 2011 4:22 pm

Sometimes it effects me while other times it doesn't. It's hard for me to pinpoint what is causing my discomfort but I can say that my pain level has shot down from an 8 to a 2 or 1. Try writing a dairy of what you consume. I found drinking nothing but water has helped alot and in-taking tons of fluids. There is a light at the end of this condition. It's just sad that you have to fight for yourself to get better and kind of be like your own doctor because it is rare to find a doctor that is knowledgeable about this condition. You will get there. Smile
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me too!

Post  grassy on Wed Sep 07, 2011 8:39 pm

I sleep all night, get up. First pee and i feel like needle pricks and burning. Then during the day, i feel better after i pee. Also after a poop i sometimes get a polka red hot burning up the entire v area. Like red hot pepper. It lasts a minute and dis appears. I also get this sensation my urine is hotter then my body. Has anyone ever wondered if they were allergic to cotton underware???? I'm wondering if maybe the underware has re= cycled garbage in it? now a days you never know. whats in a product.
I am making some progress being on a once a week diflucan. To supress any yeasty beasties. But This has taken 10 weeks, and only a 50 percent improvement. I'm going to get some calcium citrate and add that. I'm 50, so menopause may be complicating things. who knows? FOUR doctors dont! i just guess and ask ladies on the internet what they think. I have found they know more then the doctors anyway! for sure! cindy

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Re: Is this Vulvodynia!?!

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