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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 …

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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


Inflammation Theory

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Inflammation Theory

Post  noni on Mon Feb 21, 2011 3:39 pm


I found this on a website...

The experts tell WebMD that among the many theories about what causes vulvodynia, the most likely is a response to tissue abnormality, possibly caused by infection, irritation, or trauma long after it's been resolved. "I think most people believe this is chronic regional pain syndrome, or CRPS," says Glazer. "It was first noted in the Civil War as a consequence of buckshot wounds." He explains that when soft tissue gets irritated or damaged, the body activates a number of defenses. The tissue becomes inflamed and puffs up like a protective pillow to prevent further contact. New nerve endings grow and become hypersensitive so they can detect further contact and withdraw. Blood vessels in the area shut down to prevent possible infection from traveling to the rest of the body. Finally, muscles go on the defensive, producing spasms in the pelvic floor which reduce blood flow and produce further inflammation.


Glazer says treatments reflect the components of the self-protective mechanisms, so anti-inflammatory drugs, such as high-potency steroids, antihistamines, or Cox-2 inhibitors are often used. Tricyclics, which are mainly antidepressants, as well as anticonvulsant drugs, often work to relieve pain. Topical nitroglycerine may be used to open blood vessels.











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Re: Inflammation Theory

Post  Sebby (Admin) on Mon Feb 21, 2011 9:50 pm


Thanks Noni

This is one of the main theories im looking into. Will be starting biofeedback in order to re-train the pelvic floor. I have to take anti-histamines anyway for my hayfever due to start soon! I also get asthma with hayfever so unfortunatly cannot have anti-inflamatorys. Tried shop bought ibroprofen but it doesnt help. The stronger ones they gave me had to go up my bum! lol I had one at night and one in the morning and the first day I felt so sicky I coudnt carry on! Im on the pregabalin at the moment so time will tell if it works.

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Re: Inflammation Theory

Post  noni on Mon Feb 21, 2011 10:19 pm

Hey Sebby Smile

This V thing just has me baffled....have been doing some reading and some women use NSAIDs (non steroid anti inflammatory drugs) to treat Vulvodynia.

But they have a lot of side effects...they can basically destroy your stomach and gut....cause stroke and heart attacks....yikes

Which is worse the V or the treatment ?
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Re: Inflammation Theory

Post  coralburn on Fri Mar 18, 2011 2:48 am

This is really interesting... I have other problems with inflammation so the theory seems like it could make sense. I wish it explained how well the treatments worked, though--I've been on NSAIDs for about a year and I'm getting worse.

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Re: Inflammation Theory

Post  Sebby (Admin) on Sat Mar 19, 2011 8:28 pm


Im currently doing Glazer's biofeedback home training and so will let you guys know if I do get relief from if. It will take many months to know tho and Its only been 3 weeks

The training is to get the muscle stabalised so it refrains from the guarding state and allows oxygen and healing chemicals to flow back to the vulvar.

The only thing I noticed was that over the last couple of days I had a flare up and at the same time my pelvic floor was so weak I couldnt contract very well at all! Now the strength has come back and the flare up is calming. I really have no idea if this is significant or if its a coincidence??

I'll keep note tho

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Re: Inflammation Theory

Post  Coldchris on Thu Jun 09, 2011 6:59 pm

I am seeing a specialist for my vestibule that is very inflammed and red. He believes it was a hyper immune response to an infection (likely yeast from antibiotic use). On a strong steroid cream. He is a vulvar specialist and I think he has got it.

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Re: Inflammation Theory

Post  Lindilou on Wed Feb 15, 2012 11:41 am

So when you have what feels like thrush but isn't it's the vv, what do you do, how do you releive it?

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Re: Inflammation Theory

Post  noni on Wed Feb 15, 2012 11:48 pm

I am on meds for V (elavil)....but sometimes when the irritation is horrible and theres a rawness/burning feeling down there, I apply Lidocaine 2%.

I know its scary to put things down there, but it has helped me and theres always the trusty icepack.
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