Log in

I forgot my password

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: 19

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: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

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: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6


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

View previous topic View next topic Go down

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

Posts : 1
Join date : 2011-07-13

View user profile

Back to top Go down

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.
avatar
Sarah001

Posts : 1163
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum