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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


Finally - the NHS have a page on vulvodynia!

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Finally - the NHS have a page on vulvodynia!

Post  ButterflyLiz on Mon Jun 04, 2012 10:07 am

Sooo, it came to my attention last year that the NHS' online medical condition website, NHS Choices (www.nhs.uk ), did NOT have a page on vulvodynia. How could this be possible - I asked myself - when they have been treating me for it for 10 years!! I have regularly visited NHS choices / sister site NHS direct over the years to check out symptoms of various illnesses I've had and they have just about every conceivable condition on there...but nothing on v.

So I emailed them and asked them to put something up last December. They said they would. Come April - still nothing. So I mentioned it on the secret facebook group & several lovely ladies also wrote to them. Then come May - success!!! There is finally a page for vulvodynia! It's actually pretty good, too.

http://www.nhs.uk/conditions/vulvodynia/Pages/Introduction.aspx

I think this is a big step forward for several reasons:

1) Women who have vulval pain who have not yet worked up to going to see their doctor can get info from a reliable site on what the problem might be - leading to less confusion & fear about symptoms & the condition in general.

2) It will be harder for anyone to tell women this condition doesn't exist / it's all in their heads. Especially NHS practitioners - this page can be printed out & taken to appointments with clueless doctors.

3) It should help to raise awareness of this condition generally - it would have been pretty hard to convince people this is a common, serious condition when our national health service didn't even have public info about it.
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Re: Finally - the NHS have a page on vulvodynia!

Post  londonlady on Mon Jun 11, 2012 9:01 pm

that is a great thing to do - well done!


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Re: Finally - the NHS have a page on vulvodynia!

Post  Sebby (Admin) on Sat Jul 07, 2012 10:31 pm


Thats Amazing well done! Smile
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Re: Finally - the NHS have a page on vulvodynia!

Post  tinkerbelle2 on Wed Dec 11, 2013 5:24 pm

Liz, that is amazing! It is that very page that actually made me feel I perhaps wasn't crazy! We've got to spread the word about this horrible condition
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Re: Finally - the NHS have a page on vulvodynia!

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