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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 …

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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


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

I am so confused.

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I am so confused.

Post  Leslieg on Tue Oct 22, 2013 2:37 pm

I just wrote a very long entry here and somehow it did not save.  Ugh.......I will try again.  This is an abbreviated timeline.
-April 2008- gave birth via C-section following extensive back labor.
-June 2008- vulvar symptoms began. Doctor said BV.....treated with antibiotics....2 rounds and diflucan proactively.  no relief.  Doctors said hormonal irritation form breast feeding.  Continued to feel irritated and raw.
-July 2009.....went back to work and got a bowel infection (c-diff) caused by overuse of antibiotics.  Treatment for this is ironically more antibiotics.  It took 5 months to go away.  Horrible experience, but funny enough I do not remember having V symptoms during that time.  Stopped antibiotics in December 2008.
-February 2009 had sex with husband.....developed stubborn yeast infection.  OTC treatment didn't work.....given boric acid suppositories.....yeast gone.....V symptoms persisted.  
-July 2009 found vulvar specialist......biopsy done 1st visit revealing chronic inflammation.  Nurse practitioner eluded to lichen planus or lichen sclerosus.  So my desperate mind went with that.
-used prescribed cortisone ointments with little relief for a while.
                (-june 2010 baby #2 via C-section with thin thin uterus wall.)
-I was trying to cure lichen and with research spent about $1000 on homeopathy.  I did this for over a year and had a few months of glorious relief so I thought it was working.  Then they switched medicines and V symptoms of pin pricks, irritation an rawness came back. gave it about 6 more months but didn't work again.
- I started using pure aloe ( a valid treatment for lichen planus per research).  Ongoing appointments at vulvar clinic offered just changing strengths of cortisone ointments.
-Aloe started to cause weird itchy bumps after a few months........I thought this was just progressing lichen.  I went to clinic ...... this prompted referral to vulvar dermatologist within clinic.
-june 2013......Vulvar dermatologist tells me I do not have lichen.  Feel good about that but with a bit of WTF? feeling.  I am recommeded to get allergy testing.
-October 2013 allergy testing reveals significant sensitivity to cocamidopropyl betaine.  It's in my body soap and shampoo.  yeah!!!  I thought I had answer.  I got some but not complete relief from changing products.
-end of October 2013 back to vulvar dermatologist.  they see scarring from tearing from intercourse.  
-throughout 2013 I have had intermittant right side sore groin, numb feelings, kind of numb right labia and tenderness in groin area difficult to pinpoint.  This comes goes and is mostly mild.
-Doctor recommends drug doxipen (tryicyclic and PT.
-So scared to take drug. so scared.  I don't want to.
-willing to go to PT......will this hurt?

What is the relation to vulvar skin and pelvic floor????   I struggle to understand.
anyone try doxipen?  Will I gain weight..... 10mg-30 mg.

Again, my first entry had more detail and feeling.....this is much abbreviated......I guess better for you lovely ladies.  Any insight, comments or advice in relation to my story is greatly appreciated. thanks!!!
Hoping for healing for us all.


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Re: I am so confused.

Post  Sarah001 on Tue Oct 22, 2013 4:38 pm

Hi Leslie, a very simplified explanation of the pelvic floor and vulvar skin connection is the tight muscles do not allow proper blood flow to the vulvar and something that caused an irritation cannot heal without correct blood flow. That's a very simplified version and if you need more detail look up Howard Glazer online and read his explanation. I'm tempted to think tight muscles and trigger points with you, the way it started screams of abdominal and likely hip flexor trigger points so I think PT is a must. Sessions may increase symptoms temporarily at the beginning but it really depends what they find. i was told I had Lichen Planus by my GP at the time and a few months later a vulvar dermatologist immediately said I didn't have it, I think doctors grasp at anything they can give treatment for and of course the pelvic floor and trigger points aren't what doctors understand so it's quite common for them to get it wrong! I can't answer the drug question I'm afraid because I haven't taken that one but I gained 28 lbs from the drugs I was prescribed however I have slowly got rid of half of those and am working on the rest so even if you gain weight you can get rid of it without stopping medication. Perhaps someone else will know more detail to give you. But definitely give PT a chance, alot of ladies on here have had good results with it. Good luck and keep us posted.

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Re: I am so confused.

Post  Leslieg on Thu Oct 24, 2013 2:00 am

Thank you for your reply Sarah! I'm trying to stay positive! I'll keep you posted......


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Re: I am so confused.

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