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» Vestibulectomy
Fri Aug 18, 2017 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


Has anyone considered or had surgery (e.g. vestibulectomy)?

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Has anyone considered or had surgery (e.g. vestibulectomy)?

Post  takoyaki on Tue Sep 27, 2011 11:59 pm

Hello all. I am thankful that this forum exists. I've been a lurker for a few months, but I feel far less alone knowing I'm not the only one going through all of these symptoms!

My Vulvodynia symptoms started almost six years ago when I was 25, out of no where. For the first two years, gynos and other doctors made it seem like it's all in my head, that I was frigid (one gyno told me I should go out and get drunk before the next time I had sex!), that I should go see a sex therapist (who ended up amplifying the message that it was in my head, etc). I was finally diagnosed by a colleague of Andrew Goldstein--I cried when she told me what I was feeling was real and that she knew what it was. My hormones were out of whack because of hormonal birth control pills, which I stopped immediately (first signs of relief immediately followed), and applied a compounded estrogen/testosterone cream she prescribed. I started to feel better after about six months.

But two years ago, it all started getting worse again. I couldn't afford Goldstein's office because they don't accept insurance, so I started seeing Kamal Hamod at Johns Hopkins this past January. In these last 9 months, he's had me on gabapentin 6% cream, low-oxalate diet/calcium citrate, elavil, and sitz baths. I've also had a pudendal nerve block. Relief at first but then not. I've also been doing physical therapy at Georgetown since July--I can feel it benefiting my internal tightness (which was compounded by muscle pain issues in my hips, legs, and lower back), and want to continue the external work. The internal work (massage and dialators), has been difficult, primarily because the lube burns me externally. Sure enough, my vestibular area has been tearing again.

I've shared all of this because Hamod is now recommending surgery--a vestibulectomy. I go back next month to discuss. I've read the varying success rates (which seem to be affected significantly by age of patient?), but I'd like to communicate with women who have considered this option, how it went if they chose to have it, or why they chose to decline it.

I see no hope for improving my external problems of tearing and burning. The burning has in the past month and a half been traveling "up" my vulvar area to my clitoris, which scares me. I feel like I'm willing to try anything at this point.

Thanks for reading.

takoyaki

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Re: Has anyone considered or had surgery (e.g. vestibulectomy)?

Post  Sarah001 on Fri Sep 30, 2011 5:22 pm

I think most of the ladies on here have generalised V which rules out surgery as an option. Also lots of us are from the UK and it's not easy to get surgery of that kind here. Try looking on www.vulvarvestibulitisrelief.com and go through the case studies, VVS is the ony type of V suitable for surgery so there might be some women on there who could help you.
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