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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


miserable for years

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miserable for years

Post  cdrocab on Thu Feb 19, 2015 6:00 pm

I've ridden and shown horses for years and for the last 18 years carried Lidocaine cream in my saddle bags They say if you suffer from Vulvodynia stop riding horses and bikes. I no longer ride motorcycles but still try to bicycle and if armed, am able to ride the trails on my horse for about 2 hours. I had to find a home for my ungaited horse since the bouncing made it worse. No jeans allowed so I use English riding tights that have no seam. I have a short in stature rescue horse but she is not broke to saddle, just a pet. For the first time in 58 years I am not riding. I researched breeds of horses for the smoothest gate and having the best easy going attitude. It happened to be the Rocky Mountain horse which unfortunately are priced like gold here in Texas. An untrained yearling out of pasture is $3000. There are some in Eastern United States but to get it here is muy money.
I want my life back. Through all of this with outsmarting my vulva with numbing medicine, non-seamed pants and ice paks I was diagnosed with ruptured discs and had surgery that failed, got better with exercise and just as I was going to start playing horse again was diagnosed with Leukemia and it took 6 years to get the weight issue from medications under control. Yes the increase weight made my crotch 10x as bad. I started horsing around again in 2012 and got run over by 3 wild rescue horses and broke 2 vertebrae. Duh, wild horses don't stop when you flail your arms. Everything came to a halt, I lost my job and hit a low point in my life. Oh, and by the way, my husband and I have not been intimate in 3.5 years. I guess he is a brute for punishment.
I am waiting for a spinal cord stimulator to be put in to change the type of feeling that the pain receptors receive from my brain related to my back. I am hoping for the best and just maybe it will reduce the vulva pain. We shall see.
To keep me sane I dream of riding my new gaited horse in my nicely padded saddle in the mountains with minimal pain and the option of not hauling along a quart of Lidocaine salve. Oh, and speaking of salve, even though it is recommended for this type of pain my insurance only allows me a 2 oz tube of it a month. I always weigh out what the most important activity is and only use it parsimoniously. I realize I am being a Chatty Cathy but there is no one to talk to about this and wouldn't I blow my FB friends off the page if I brought this up. Vulvodynia has isolated me in doing things and without being able to talk about it to anyone who understands it has been a saddening aspect. Since I have lived with this before it was even a qualified recognized diagnosis I was lucky to have a Gynecologist who would help treat me symptomatically.

Thanks for listening and any one who is a trail rider who has more ideas for dealing with the pain, give me a shout.

cdrocab

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Re: miserable for years

Post  meelie on Fri Feb 20, 2015 3:44 pm

Hi fellow horse gal. Just read your post and feel your pain. You have really bean thru some shit. I live in Georgia. Wish we were closer. I also suffer with this horrible curse. I had back surgery Dec. 31 for spondylothesis. I have been on pain meds since. Not so much as at the beginning but a couple times in 24 hours. I have been spared the V for a while now since surgery but I'm sure it's the percocet or soma but pray pray pray that it is because the Dr. released many pinched nerve endings. He says he doesn't believe that the surgery would help the V but I believe in miracles. I have also been to PT for manual massage down there before the surgery of course. But my insurance, medicare supplement, changed this year and I can't afford PT anymore. I actually gave up riding due to back and leg pain more than the V. Somehow I learned to sit without pressure on the vulva. I have also started taken mucho magnesium, it helps muscles relax. I also soaked in epsom salts baths, it is really magnesium and helps relax those muscles too. I also take calcium citrate. I don't know the cause of your V, I finally after 2 years decided that it was my pelvic floor muscles all knotted up after I took an unscheduled flight off my green Arab in April 2011 and broke my left pelvis therefore I sat on my right side for over 2 years before I deducted what I was doing.
Anyway I guess I'm saying I'm here for you and totally understand. My burning would go away at night while I slept and relaxed I was very glad of that.
Do you know what may have caused your pain? Is it burning or stabbing or what. Is it on touch or general.
I dream of the day that I can ride again. Due to the surgery I have been forbidden by my surgeon not to ride for six months after surgery. I am going to obey his rules.
You can send me private messages if you would like. I have a husband also but I have found "other" ways to help him out sex wise just to keep him half way sane.
Here for you friend.

meelie

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Location : Barnesville, Ga

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Re: miserable for years

Post  cdrocab on Sat Mar 07, 2015 10:57 pm

....meelie.......I have had a heck of a time getting back onto this site. I think it got attacked by viruses because the next thing I know I am chasing a nasty virus through my laptop. Because it has taken so long to get back on and it just happened today I have now run out of time and need to go do my horse at the barn. I now know what it takes to get back on here so will follow up with you about being a horsewoman with vulvodynia. It was great hearing from you and I will come back and we will proceed.
Thx
Candice Razz

cdrocab

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Re: miserable for years

Post  meelie on Sun Mar 08, 2015 11:57 pm

sounds great, pm me if you want. waiting to hear from you. Very Happy

meelie

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Re: miserable for years

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