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» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris


Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

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Sat Feb 10, 2018 12:18 am by rockylife


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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad

Comments: 8

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: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

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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