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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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: 4

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

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

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: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


My story, so far...(lengthy)

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My story, so far...(lengthy)

Post  haybay on Fri Apr 03, 2015 2:23 am

I'm Hailey, and I'll be 28 years old next month. I've worked retail management and customer service most of my life, and I'm currently a full time student. I've been exposed to high stress environments for the last ten years, and I'm not the type to worry much about anything. I've always believed everything happens for a reason, and in time, "even grass will turn to milk."  

The experience I've had with what *might* be vulvodynia is something that goes against everything I stand for. How can there be a reason that I, as well as all of you, can be challenged with something so painful, and so invisible to anyone who can help. This discomfort, these symptoms, with no outward signs made ABSOLUTELY NO SENSE to me.

As a child, and throughout my adolescence, I was incredibly prone to UTIs and kidney stones. After several UTIs during my youth, I was hospitalized with a severe kidney infection and dehydration. I also maintained a fever of 104.something for several hours. Every time I had a UTI, I was given amoxicillin, and every time I took amoxicillin, I got a yeast infection. Eventually I started requesting Diflucan with amoxicillin to combat the yeast infection. More recently, doctors prescribed antibiotics less likely to give me a yeast infection, because I can't imagine a yeast infection on top of whatever this is.

I can remember having vulvar discomfort since I was 24 years old. I had been sexually inactive for 2 years at that point, and it began with a very localized itch. I had one very small, skin colored bump at the opening of my labia majora. The bump itched incessantly, and if I pinched it, it would bruise and discharge a small amount of blood from the nearby hair follicle. The wound would stay open for days and it seemed to infect the other side of the opening of my labia majora, at the exact spot it rested against with my legs closed. The bumps were sensative to urine and water. The bump would fade and return, never with any outward visibility. Even when the bump wasn't present, I began to develop a chronic itch. After my monthly period, it would clear up for days, weeks, and once or twice, a month or more.

I waited until the symptoms were incredibly discomforting before going to the local heath department. They gave me tests for the most common STDs and everything showed negative. I remained sexually inactive for another year, but still experienced itching. The itching became so intense that I was ripping my skin with my fingernails and damn near scrubbing myself with toilet paper because it felt so good. Of course, I developed a bacterial infection that caused the itch to become even MORE intense.

I returned to the health department several months after my first visit. I no longer had the invisible, itchy, swollen bumps that it seemed to start with. Just an embarrassing, uncomfortable itch. The doctor I saw that time around informed me that my previous STD tests never included a test for herpes. I never knew a special culture was done to test for herpes, and was always under the impression that I'd been tested every year for everything since I was 16. Evidently, I'd never been tested for herpes, and I about had a heart attack right then and there. I know if that's the direction it went in, I'd be okay - the world wouldn't end - but I was TERRIFIED.

The doctor took one look, for a few seconds, and told me that she thought I had herpes. She said, "I really usually tell people that I'm 90% sure without a culture, but for you, I'm only 80% sure. You don't have a classic case, that's for sure." That day, at 26 years old, I went home and cried in my momma's lap. I blamed God, my exboyfriends, the health department and myself. The woman prescribed me with cream and medicine for herpes, but I did not take it. I'd researched enough about my symptoms at that point, and women existed with my symptoms! Women that didn't have herpes! And actually, some of these women experienced extremely intensified symptoms after treating them with herpes medicine. I thought I'd get a second opinion.

I scheduled an appointment with an OB/GYN in the medical district. The doctor examined me and gave me tests for bacterial infections and STDs. She did not give me a test for herpes, because there was nothing to culture. There was no outbreaks, no pimples, nothing with a discharge; everything looked fine. She did notice high levels of bacteria, and gave me an Rx for Flagel and a steroidal topical cream. The cream burned, and did not help at all. The Flagel seemed to help while I was taking it, but as soon as I stopped taking it, the itch returned.

Without the money to keep going to doctors and buying perscriptions, I tried to find a home remedy. I started using different lotions. Lotion seemed to help because it made scratching more satisfying and less traumatic to my scarring skin. I did go back to the gynecologist approximately 8 months later. My symptoms hadn't improved since I finished my antibiotics. I was starting to experience swelling and burning, as well as stabbing pain in and around my clitoral hood and glans. I've never felt any pain or itch any closer to my vaginal opening than that. But, when my clitoris is swollen, it feels like there is a splinter firmly wedged somewhere in there. It makes underwear and sex completely uncomfortable. I was still scratching so hard I was breaking skin, and the gynecologist was able to see that. She could see that I was raw in the area around and above my clitoris, and extending through my hairline at the opening of my labia majora.

She said she could culture the area of skin I broke scratching for herpes (to ease my mind), but it may not be enough to render results. It would be expensive, and its accuracy could not be guaranteed because the skin was broken from a scratch, not an outbreak. I declined the culture and agreed to come back on a day where my symptoms were any worse or more visible, at least. She suggested I look into the symptoms of lichen sclerosis to see if they matched my own.

I finally began discussing my symptoms with a friend, who told me her sister and her best friend had vulvodynia. She said her both her sister's and her friend's symptoms were provoked by using the ONE-TIME USE MONISTAT for a yeast infection. I began researching vulvodynia and found that it more accurately describes my symptoms than anything else I've looked at. Also, in regards to my doctor's suggestion of lichen sclerosis, I found another source that talked about lichen simplex, which also closely matched my symptoms. My doctor also said that our nerves can develop a lifelong "itching" sensation after situations that cause serious, long term itching. In other words, she said if you scratch long enough, you'll itch forever.

So - anyway, that's my story so far. I've found ice and sleeping pills help at night, wearing seemless underwear (regardless of the material) helps during the day, and SPECIFICALLY, Queen Helene's Cocoa Butter Face & Body Cream keeps the area from becoming raw.

Wow, this got long - but it feels great to have it all out in chronological order. I'm going to keep this as a record and bring it with me to my next appointment to see if there's something I forgot to tell my doctor!

Time for a nap.
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haybay

Posts : 5
Join date : 2015-03-31
Age : 30
Location : Mississippi, USA

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