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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 …

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: 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 …

Comments: 5


MUST READ- ALL MEMBERS

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MUST READ- ALL MEMBERS

Post  sadone on Sun Jan 17, 2016 4:12 pm

Please Please watch this piece on youtube and flood the comment section. The anchor on this program has a despicable reaction to vulvodynia. Share with any groups. Let's get this youtube removed.

https://www.youtube.com/watch?v=e9EL0G58OP8

sadone

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PLEASE respond

Post  sadone on Tue Jan 26, 2016 12:34 am

We need to take action. contact the nva. www.nva.org. let them know that you want this youtube removed. i worry that it is going to make women with V despondent. Please take action. We only have each other.

We have to advocate for ourselves. Personally, I was devastated by the video. But it is inaccurate and insensitive.

If we don't advocate for ourselves, then nothing will happen to help us.

https://www.youtube.com/watch?v=e9EL0G58OP8

If this vid causes one suicide, we only have ourselves to blame for not acting.

PLEASE....


sadone

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Re: MUST READ- ALL MEMBERS

Post  meelie on Tue Feb 02, 2016 3:22 pm

I disagree. I think that there should be more media coverage of this horrid curse. Maybe if there were more on it and the world learned that it exists there will be more work done to fix it. I don't think any one with this curse could get anymore despondent that they already are. In fact it makes me feel a little better about it that my curse is being talked about in the real world and that now maybe people will believe me when I have the courage to come out and tell someone about it. I have people who roll their eyes or otherwise acts like they think it's made up or all in my head. So I am glad it is out and should be out more. "coming out" is the only way to get things done. Letting the rest of the world know what is happening is the only way to changes made. Maybe it will get more doctors to do research so more of us can get help in our home towns instead of having to travel hours to someone claiming to know about. Those are my thoughts.

meelie

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Thank you

Post  sadone on Sat Feb 27, 2016 6:35 am

Thanks, Meelie for your reply. I agree that it should be talked about. What I didn't like about the video was the guy saying that he would not date someone with V and ninety nine percent of guys wouldn't either. And that he had no advice to offer.

That was insulting. And the comments were horrendous. People were making fun of the condition.


That was the part that was cruel and showed no empathy. Anyway, it drove me over the edge. I had to make an appointment with my therapist after seeing it. It really upset me terribly. I worry that I will be alone forever bc of this. And after a break up with my bf this made me feel like giving up on life even more.

Anyway, I wrote to TYT and my therapist is going to do the same. Just talking about it now is making me really upset. Sad already I am having suicide ideation... this youtube made me worse.

sadone

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Re: MUST READ- ALL MEMBERS

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