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» 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

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

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

» Anyone else have burning on the front of thighs?
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» 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


Growing up Clueless

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Growing up Clueless

Post  orangelight on Thu Apr 14, 2016 10:02 pm

I first found out that I had severe pain when trying to have sex on my wedding night. Yes, that's the first time I had ever *inserted* anything in my vagina, and now about 6 years later I'm still the same.

I'm 29 and since I grew up in 5 different countries, there wasn't much about sex or tampons or in the way of sex education anywhere around. Married my best friend right after college and we were both shocked that we couldn't have sex! My first thought: "oh Shit, I wish I'd gotten some sex ed or tried something with a tampon?! Do I even have a vagina?!" I guess I never thought about it before because we had fooled around a lot before getting married, and never had a problem with pleasure, sex drive, labido, etc. We were just saving the intercourse bit to make it all the more special Wink I did prepare for avoiding pregnancy, by starting YAZ birth control a couple months before I got married (it made my breasts hurt, killed my labido and made me super moody).

The first few doctors and gynecologists I saw said that I was fine, and that I was just scared. They suggested i was too anxious, or too stressed. Maybe some antidepressants may help, or anti anxiety meds. There were no infections and no yeast issues. At this point I stopped taking the birth control pills because there was no obvious need. My labido actually slowly recovered over the next couple years. They suggested wine or muscle relaxants or something to knock my consciousness out so while I was inhibited DH could just force his way in and I wouldn't react much to the pain. Luckily both him and I didn't think these ideas were too appealing. Some of the good doctors suggested dialators and using lots of lube. We ordered a set from vaginismus.com and I used it for months. I went back to the gyn office so excited to hear about any improvement. I had been putting myself through pain with dilators and just stuffing a penis in there and UTIs from making him go it while I would just bare down and deal with the pain to see if it all changed (just to experiment, never had sex that way, I would have passed out from the pain!). The doctor told me stoically, that there was nothing she could do for me, that I was still a virgin (!), my hymen wasn't broken, and I should just keep trying what I was doing, or she could give me some sedatives.

The hardest part of it all is trying to keep my sanity and marriage from falling apart. A mistake we made is mostly ignoring it for the first couple of years chalking it up to nerves or inexperience, instead of talking about it openly and how important it is to have intercourse as part of a sexual relationship. I thought that non intercourse sex would be enough to satisfy ourselves but that didn't prove to be true after a few years. Finally after our fifth anniversary came a big wake up moment, and this time around I have been pursuing help as hard and fast as I can. I'm going to hit 30 soon and i have the same fears settling in that many of you may have: how am I going to live my life like this? will my relationship sustain this? can i have children if i've never enjoyed sex before? how do i get healthier while trying to stay sane and focus on anything else in life?

I really started looking at the issue and getting familiar with my vagina, Using mirrors and cutips and the light from my iPhone Very Happy, I narrowed down the pain to the 'vestibule' right outside my hymen. I work in a medical setting so I ordered some lidocaine gel one day, and put it only on the burning parts, and had sex for the first time ever! Broke my hymen and everything. We joke that I lost my virginity finally after being married for 5 years. I consider that as one of my most proudest moments, lol. Without the lidocaine, things are the same and the pain stays around the vestibule. I noticed it gets better around the time I am ovulating.

My life view and likeliness to use medications may not match others, but I thought it was important to share the whole story anyway. I have never been part of a support group before and have fought the idea of telling strangers my story tooth and nail. I want to be honest to myself about where I'm at, there's a lot to learn and I'm desperate for help and insight, not just about the pain, but how to live life when you're at the end of your rope with this.

orangelight

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Join date : 2016-04-14

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Re: Growing up Clueless

Post  emalita on Thu Apr 14, 2016 11:50 pm

Thank you for sharing your story! The more we can be open about this horrible pain, the better educated we can be at being our best advocates!

Congrats on finally "losing your virginity" Wink  Anything that can make you smile is worth celebrating.

My initial pain that started all this mess for me used to completely disappear surrounding the time of ovulation. My current specialist said that is due to the increase in estrogen during that time. He believes it doesn't matter what our hormone results show (i.e. normal estrogen levels) because he said that has little to do with the estrogen our vaginas receive or how well our vaginas use it. He said estrogen blood tests have a huge range of what's considered "normal", and for ladies with vulvodynia, we need to be on the very high end of the specrum. He calls it a very high estrogen demanding vagina  Laughing My hormone saliva tests came back "normal" for estrogen, and I haven't been on his estrogen vaginal tablets long enough to know if he's right, but it seemed somewhat logical for me.

Since you find some relief during ovulation, I think you're on the right path looking into the hormone side of things.

Welcome to the forum!

emalita

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