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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?
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 journey so far...

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My journey so far...

Post  xlmc89x on Sat Mar 24, 2012 8:45 pm

My pain started fairly young. As I began to go through puberty and start my menstrual cycle, I struggled because unlike my peers, I found myself unable to wear tampons. Summers were difficult, embarassing, and frustrating. But it was nothing compared to the battle I face now as an adult.

When I became sexually active I had a difficult time because penetration was excrutiatingly painful–even manual penetraton causes that burning, painful, itching, scratching feeling that I felt when I tried to use tampons. And sex obviously was no picnic.

I lost my virginity at age 18 to a boy who was comprable in size to myself– 5’3 95lbs– the pain was noticeable but not crippling. Because he was not the most well-endowed, I was able to have sex even through the pain. Although I never found it particularly enjoyable, I was able to do it. But after a few months of a not-so-great relationship, we broke up and I met the love of my life, John. And four years later John and I are still together against all odds. We connect emotionally and intellectually and every day I feel like the luckiest woman alive. But our sex life is difficult.

In 2008 I first started looking for answers. A gynecologist tested me for Endemitriosis through an exploratory Laproscopy and found nothing. So I was quickly back to square one. After searching and a lot of confusion, I explored treatment options for Vaginismus–believing that to be my condition. I used dialators and other techniques and still was left no closer to finding relief.

In 2010 I began seeing a specialist at Boston Medical Center who told me that without a doubt I had Vestibulitis. He tested my blood to see what was going on with me and discovered that I have extremely low levels of testosterone. So for over a year I have been taking a topical testosterone gel and using a numbing solution to try to have a normal sex life. (yeah right!) I cannot take any form of oral contraceptive either to make sure that my body is not overpowered by estrogen.

A month ago I went in for another follow-up appointment and laid down the line. I am still in pain. It has been over a year and the testosterone is not helping me. His offer to me was to perform a Vestibulectomy where he would basically remove the inflammed tissue. But I don’t want surgery. Not if it’s not necessary. I feel like there are more answers out there waiting for me and that it is my responsibility to take charge of my own life and explore other options.

I need answers. There has to be some reason I have this. If I get the surgery, won't the tissue just grow back still inflammed if I don't deal with what is CAUSING the problem? I need to know more about this condition and I am interested in learning what worked for others in my situation

xlmc89x

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UPDATE

Post  xlmc89x on Thu Apr 19, 2012 8:42 pm

So, after my docotor (Ricardo Munnariz at Boston Medical Center) recommended the vestibulectomy I decided that instead of putting myself through that pain and time off of work I wanted to get a second opinion. So I made an appointment with the Women's Health Center at Harvard Vanguard in Burlington where Dr. Elizabeth Stewart works out of. My appointment was with Katherine Bell N.P. and I really liked her.

Thus far I've been taking Testim to build up my testosterone but my pain is still there and my drive hasn't increased either. But Dr. Bell did an exam and I held a mirror so I could see myself and she showed me that most of my skin was healthy except for a small area of inflammation. She prescribed Neurontin or Gabapentin at 100mgs increasing every 3 days till I hit 1000mgs where I will go in and reasses. She also wanted me to start physical therapy but unfortunately the wait list for that has me waiting until June so I am just going to work with dialators on my own. But she said the vestibulectomy surgery can often do more damage than good. And that it was unneccessary in my case.

Right now I feel like things are looking up and I'm really happy about it. I didn't want the surgery unless absolutely necessary and I'm so happy she didn't recommend that for me.

Anyone who lives in the New England area should seriously consider taking a trip to Burlington to see the Vulvovaginal Specialists there because they are amazing. I'll update with my progress!

xlmc89x

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