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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

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: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

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: 1

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: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering


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: 1

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

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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