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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 3

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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: 10

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

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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