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» Acupuncture advice please
Yesterday at 6:08 pm by fairlight10

» Please tell me this can get better
Yesterday at 2:10 am by anon99

» 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


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

Congenital Neuroproliferative vestibulodynia?

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Congenital Neuroproliferative vestibulodynia?

Post  Oleniloinen on Thu Jun 02, 2016 5:02 pm

Hello dear friends!
Really need your help, in our country doctors don't know this desease at all, and after reading some information i suppose i have Congenital Neuroproliferative vestibulodynia, can you suggest something?

Im 28, so my vestibula and vagina is painfull since child, but only when touched, sex was always painfull (less painfull while periods of ovulation - i suppose cuz of cervical mucus). The main pain is on the eve of the vagina, and when i put my finger to it there are some ridges at the very beginning and they are extremely painfull, so even oral sex for me is very uncomfortable.

Why I suggest that it can be Congenital Neuroproliferative vestibulodynia is that in book "When sex hurts" is said that usually belly button is painfull, and since childhood i dont like to touch it - very uncomfortable.

So dear friends, can you share your thoughts, sometimes i think that there is no wayout and sex for me will be always painfull


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Re: Congenital Neuroproliferative vestibulodynia?

Post  emalita on Thu Jun 02, 2016 8:53 pm

From a quick google search, it sounds like what you're referring to is also known as Provoked Vestibulodynia, which is the more common term. Regardless of what it is called, I'm so sorry to hear you are in pain. I certainly understand how frustrating and devastating it can be.

What treatments have you tried so far? I'm not sure where you're located and what's available, but there are many antidepressants or anticonvulsants (e.g. gabapentin, amitriptyline, etc.) that women seem to have good success with.

Have you tried pelvic floor physical therapy?


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RE: Congenital Neuroproliferative Vestibulodynia

Post  Antaea on Fri Jun 03, 2016 11:44 am

Hi from Norway!
I guess you're Finnish. It is very sad that your doctors are so unaware this horrible condition, but this is not the case in Sweden. Do you speak Swedish? In Sweden, there are several "vulvamottagelser" (using Norwegian now). The problem there is the opposite. Vulvodynia, even generalized, is called vestibulitt. If you have this kind of pain, then there is a great chance that you may get help there. There is a very good Swedish group on Facebook, called "Uretritt og vestibulitt". Several women with similar problems are exchanging their experiences. There is a Danish group too, but in Denmark the situasjon is a little bit as in Finland. In Norway most of the doctors know about this condition, but have little experience. There is only one vulva-klinikk in Oslo. Waiting time is more than 2 years for one appointment. I had to read a lot, nearly all of the information was in English and from English-speaking countries. When I experienced the typical symptoms for a second time since 2008, I gathered all information, then presented the case to my GP in a way that there was only one conclusion.... Fortunately I have had this pain only for a few weeks, and got my present medication at once. Today, after three weeks of treatment with Gabapentin I am nearly pain free. Without it I have constant nerve-pain, like a red-hot charcoal, in my entire vulva.
If you have questions, please send a PM - I understand Swedish as well as Norwegian and German.
I wish you can get relief very soon - sending youa lot of positive energies.

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Re: Congenital Neuroproliferative vestibulodynia?

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