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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 …

Comments: 1

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

Fri Mar 09, 2018 6:17 pm by Tunes25


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


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

Trying to understand:)

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Trying to understand:)

Post  senozs1 on Thu Oct 06, 2016 12:26 pm

Hello everyone, I have so many questions which I'm trying to understand myself from my own experience but hopefully some of you guys can help me understand better:)

My pain started when my boyfriend and I were having dry sex. (I was still in my underwear) I remember the burning and knifelike pain but I couldn't make any sense. After that moment, I was never able to sit down. My pain was constant and I remember the burning being soooo severe. Later on, I was diagnosed with localized, provoked vulvodynia.

1) I would sit down and after that the pain wouldn't go away. It was like a cycle, it was provoked and it would hurt for hours and then I would sit again and so on and on. Can localized pain can hurt all the time right after the minute you sit down?


I had vestibulectomy but one part of the pain didn't go away. After 3 months I had and MR neurography done. (for the pudendal nerve) My pain has always been on the left side. And according to the report, my left pudendal nerve is thicker than the right one.
So after months, I figured my main burning was due to an abscess (bartholin gland) I had the bartholin gland removal surgery and now my pain isn't as bad as before. Which brings me to my second question,Smile

2)Can a huge(size of a table tennis ball) bartholin abscess could have caused that report to turn out the way it was? Doctors told me that this report doesn't determine anything. It just shows that the pudendal nerve is problematic.

3) (I've never had sex, penetration, and that day with my ex I remember not wanting to) Can one stressful event cause pelvic muscles spasm and damage the pudendal nerve which can cause VVS?

But my burning had always been in my entire vestibule. After vestibulectomy, my doctor told me that I had way too many mast cells. Btw, I had no pudendal neuralgia symptoms other than pain with sitting. (I still can't sit very well but I'd like to believe its because of the recent bartholin surgery)

Now looking back, I'm trying to find what started all this. The burning pain started that day with my ex and it became worse each day until I wasn't able to even walk. But the first month it was more like a mild mild aching pain. Then it became so severe. Could I have tightened the pelvic floor muscles not wanting to go any further and damaged the nerves? What I don't understand is, I remember the left side being super super severe and the right side was way better than the left one.
I think I was born with too many nerve endings and triggered it that day. I still have burning but not constant. I think I have scar tissue on the right side too and it burns crazy.
I know how long this is, but I can't believe that one stressful event can damage the nerves.


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