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» What's next?
Fri Apr 20, 2018 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

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 …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


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.
Leslie

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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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