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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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: 8

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

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: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

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


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

Oleniloinen

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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?

emalita

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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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Antaea

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Re: Congenital Neuroproliferative vestibulodynia?

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