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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 …

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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: 13

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

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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 …

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Post  rockylife on Mon Sep 03, 2018 6:25 am

I have read on Google that “ Vulvar vestibulitis syndrome and vulvodynia occur more frequently in women with two autoimmune conditions, Sjogren's Syndrome and lupus erythematosus. Fibromyalgia, which many researchers also believe is an autoimmune disease, may also be associated with vulvodynia and VVS.”

What dose that mean? Does having vulvodynia means you have lupus??
Omg I dont know How to calm myself. Please someone explain it to me.


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Post  aspaceodyssey on Tue Sep 04, 2018 8:33 pm

Autoimmunity is a fairly common underlying factor in these conditions and can be a cause but it's not ALWAYS a cause, so no need to panic. FWIW, I have autoimmunity and it is an underlying cause for me but I do not have lupus, I have other conditions (vitiligo, lichen sclerosus) and now that I understand what I'm working with and have cleaned up my lifestyle considerably, all is pretty under control and manageable. I do have a subconscious fear of more and more conditions emerging as life goes on so I understand your panic in that sense, it does suck to have to carry that worry, but I like to think it's irrational and if anything, use it as motivation to take good care of my body to do my best to ensure that that doesn't happen!


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No, having vulvodynia does not mean you have lupus

Post  Lemonary on Wed Oct 10, 2018 6:54 am


I've had vulvodynia for 6 years and chronic pain for 10. I don't have any autoimmune diseases and trust me, I've been tested for them all. If you're really concerned about having autoimmune diseases, ask your doctor to test for them by name. Vulvodynia is more likely to occur in people with these conditions, but that doesn't mean that everyone who has vulvodynia has them. I'd not worry about it until I talked to my doctor and got tested.

Good luck with your journey


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it can be true what you read

Post  pussycat on Wed Oct 10, 2018 2:01 pm

Hi rockylife,

it can be true, what you read. Autoimmune conditions are very tricky by nature, they can appear later in life and are not very easy treat them. I am not trying to scare you, but i am saying looking at my own life honestly! I had V. in a past and fortunately it went away, not without me trying.  I have have been absolutely fine for some good years since then and did not have any serious flare ups. But after that and now i have very strange, devastating and isolating symptoms, which can be described as autoimmune condition as my body, my brain attacks me. Often times i thought about V in a past and this disorder, that i have now are coming from same something. May be that's why i have this condition? Doctors do not know why i have it and what to do about it, just like in a past with V.. I can not work, can not go to shops without feeling very sick there and afterwards, can not be in most places, can not be around most people.

Again i say it not to scare you, but just being honest.


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