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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 …

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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


Vulvodynia is a secret

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Vulvodynia is a secret

Post  Hopeitworks on Sat Aug 05, 2017 8:25 pm

Hello everyone,
Vulvodynia is my secret because how do you tell friends and family. I can't picture going to lunch with friends and just blurting out "my V burns all day". I can imagine the looks I may get. The only people I've ever told are the many doctors I've seen, my husband, and you all. It's not like I can walk into a meeting at work and say today's a bad day my V hurts. Like you can do with a headache. I recently had vesectobltmy surgery and had to lie about what kind of surgery I was having to my work. I don't like to lie, but what other choice did I have. The stigma that comes with any type of symptom that involves burning of V equals infection in most people's minds. This is why thus condition makes us feel so alone and worthless. Please share your comments about telling others.

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Re: Vulvodynia is a secret

Post  tinkerbelle2 on Sat Sep 16, 2017 1:22 pm

I know exactly what you mean! It's not the kind of thing you feel you can casually just drop into a conversation. I have told a few close friends about it and they have been empathetic but it can still be a bit awkward. A couple of them have even had a similar thing, but theirs usually went away on it's own. I feel like I don't really wanna bring it up again and be like "you know that thing I told you I had years ago? well , I've still got it!!" I think it's a difficult thing for people to advise you on or even offer words of encouragement if they don't relate or understand it themselves. But sometimes even just being there to listen can be enough.
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Re: Vulvodynia is a secret

Post  aspaceodyssey on Fri Jan 19, 2018 5:03 pm

absolutely. it is such a lonely condition and that makes it all the more difficult. but know that you are never alone. there are many of us out there dealing with the same and we all have your back in spirit, even if we sadly can't be there in person. most people in my life including my parents have no clue that I've been dealing with this for almost 15 years now...crazy. but I have a supportive partner and a couple close friends who do know and that's all you need. I recently contributed to a book that included women's personal experiences of vulvodynia as well and talked about the lonely, isolating side of this journey. it was scary to even write about it anonymously, but so cathartic, and I felt proud knowing my words might help others like us feel less alone. I'm not sure if the book was published yet...now I want to follow up with the author and find out!

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Re: Vulvodynia is a secret

Post  ryn207 on Sat Jan 20, 2018 1:59 am

I totally know what you mean. I'm lucky to have some friends, family, and a boyfriend that I can talk to, but I do feel like I'm being a downer sometimes. I'm an open book when it comes to a lot of things so while I felt I could tell those that I'm close with, it still feels a bit awkward. They're sympathetic, but they can't imagine what it's like so they typically don't know how to respond after a minute or two into the discussion. Most aren't comfortable with asking questions so you're the one that has to always bring it up if you want to vent which makes you feel like a bother. I might go months without speaking about it to friends (even though I feel the symptoms everyday) so when I do bring it up it's like they forgot I even have this and can't believe I'm still in pain! They're always shocked because they've also never heard of something like this.

You should definitely keep using this website since it's filled with women who know exactly what you're going through. Everyone needs to vent at some point in order to stay sane.

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Re: Vulvodynia is a secret

Post  fairlight10 on Sat Jan 20, 2018 11:45 am

This forum is so valuable for women with this condition. We can all speak openly without being embarassed. When I found this forum, I didn't feel so alone.

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Re: Vulvodynia is a secret

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