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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: 4

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

Just a depressing rant

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Just a depressing rant

Post  lolainslacks on Tue Sep 27, 2011 12:22 pm

I'm feeling so bad about this lately. I already have real problems with anxiety that I've had to deal with for years, and now that this disorder is a part of my life it seems to be the epicenter of my anxiety.

The pain medication I've been taking since July has not helped at all. I know it's just the first one and there are others for me to try, but I pinned a lot of hope on this and it's a huge disappointment.

It's just, these dilators, they work sometimes. If I use lidocaine I can get all the way up to the largest, which is average penis size, so sex is definately possible now. But I have to take my time each session, and I can't use the largest for about forty minutes. Over half an hour of foreplay every single time I have sex in the future. And after I use them, the pain lasts a day, so I won't be able to have sex two days in a row. And some days are worse than others so some days the lidocaine doesn't help me, which means that some days sex just won't be possible. And the week of my period, from the second it starts to about four days after it's ended, any penetration is impossible. Which means that really, sex will hardly ever be possible, and when it is, it will never be spontaneous or romantic. Instead it will be long and slow and clinical.

And I'll never be able to have casual sex with a guy I don't know that well, or with someone I just meet and want to sleep with. I know that this kind of sex is frowned upon, or is thought of as 'slutty', but other women have this option, and I don't. It's something I want to at least be able to do. It's my choice who I sleep with. But I can't even consider it, because guys who want casual sex won't be willing to wait half an hour with me, and I can't very well carry a lidocaine syringe everywhere I go.

Right now I am just in a state of rage and depression and resentment. And every fucking movie I try to watch to take my mind off things has a sex scene that makes me feel like shit. I feel hopeless, I can't imagine ever finding any man who will be okay with my situation.


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Re: Just a depressing rant

Post  Sarah001 on Tue Sep 27, 2011 4:38 pm

I feel exactly the same right now, I got asked out a couple of weeks ago by a guy I've known for a while and I said no because I can't have sex at this point ever so it just wasn't worth getting into it. I also live in an area where I couldn't gaurantee if I told one person other than my closest friends it wouldn't become common knowledge and I don't want strangers knowing about my vulvar! I too think it must be fantastic for these women to be able to have spontaneous sex with whoever they choose and feel cheated I can't, and I just don't want to even go there with any man so I'm feeling like I'm resigned to be alone forever. I really know how you feel as the meds aren't working well for me either, I've just had my Lyrica increased to 450mg a day on top of 50mg of Ami and I too thought medication would be my last resort so I'm really worried and disappointed it isn't working. I didn't get on with the lidocaine and mine is generalised V anyway but I did see plenty of women on other sites saying it lost effectiveness over time as the body becomes used to it, much the way the meds do. I'm pinning alot of hope on physio and I'm very worried it won't work because if it doesn't there's no other option for me. I honestly don't know what I'll do if it doesn't help, the thought of it frightens me. So I totally understand and empathise with you, I can't make you feel any better but I can show you you're not on your own with this. x

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Re: Just a depressing rant

Post  lolainslacks on Tue Sep 27, 2011 6:26 pm

Thank you so much. It really is a great comfort to be able to talk to someone who knows what this is like.

I have my very first physio appointment on the 12 of October, and I'm so scared about it because, like you, I consider this a last resort. I am sure it will help with my muscle control, but really, I can't see how it's going to be anything other than unbearable, because any physical examination is excruciating for me. There are just some days where I feel like there's no point getting out of bed because this makes me feel so depressed. Thank you for empathising. x x x


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Re: Just a depressing rant

Post  Mette on Tue Sep 27, 2011 10:38 pm

I just want to tell you both that I've been where you are. I know that hopeless feeling you get when the treatments aren't working. I was told several times that I had an incurable condition. But since they told me that new treatments have been developed and I keep hearing about new things. Right now I'm on ami and it made me able to continue my life. The first couple of doctors I saw didn't know that was even a possibility.

About sex I just want to tell you not to give up hope. Just because you are not able to use the dilator does not mean that you won't be able to have sex with a man with the same size penis. If you're turned on it's a totally different thing. Your vagina opens up and gets ready naturally. I'm not able to have a gyno exam without screaming and crying, but I'm able to really enjoy sex with my boyfriend. It hurts a little, but it's still really nice.

What I'm trying to say is: don't give up hope. You never know if life is going to change until it does.


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Re: Just a depressing rant

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