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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: 10

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 0

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

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: 4

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: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

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

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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