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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4


New Here ~~~~

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New Here ~~~~

Post  daisiesfordays on Mon Aug 04, 2014 5:07 am

Hi all,  I love you 
I'm new here!
I'm a junior in college and was recently diagnosed with VVS. I had been taking birth control for the past year and 2 months before getting diagnosed, since it was the only thing that worked for my skin. Of course, I'm one of those people who hates hates hates blood, so I would always skip the sugar pills and start a new pack.
I got a yeast infection once, and didn't think much that the applicator hurt to use. The YI went away, but I went to gynecologist anyways. When she swabbed me, I nearly fell off the table! She was surprised and asked if I had any problems with tampons (I hadn't in the past).
Long story short, YI came back because of antibiotic she prescribed me. It was awful and the gynecologist couldn't even examine me because just touching the vestibule with a q-tip set me off the table.
By now, I'm on my third doctor. I just finished my period (had stopped taking BC pills) and the itching came back. I was getting really tired of taking Diflucan, so I looked for some home remedies. I tried Gentian Violet, which only ended up burning my vagina. Really fun! (I think that's why I'm having issues now).

I finally found a specialist in my city, nonetheless. I went to visit him, and he diagnosed me with VVS and secondary vaginismus. He said it was due to my BC pills. So basically, I can never take those bad boys again. I've been using estrace cream which helped a TON, but ever since I started on spirolonactone 2 days ago, it's been acting up again. I just feel burning on the left side, but it's not ALL the time? And it's not super painful, just annoying! Any advice?
Thanks! Nice to meet all of y'all

daisiesfordays

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Hi there!

Post  907hopeful on Mon Aug 04, 2014 10:51 pm

I just got a note that you posted on one of my old posts. I have not been on this forum for a while. I don't have time to write my whole story out, but you might be able to find it if you search for my old posts. In a nutshell I have vulvodynia which started out as irritation when I used tampons and through multiple creams and treatments later ended up as severe burning and vestibulitis. I found a dr in AZ and spent lots of money to travel and see him. He has been an absolute life saver. He retired from the Mayo clinic and opened up a clinic just to treat chronic vulvar/vaginal issues. I am on month 4 of treatment and would say I feel 75-80% better. Google him - Dr Fowler in AZ. His website seems a little quirky (more like a business than a dr's office), but he knows his stuff! He has me on a regime of anti-fungal, anti-bacterial and estrogen creams. Send me a message if you want to know more. And keep your head up. This is a nasty disease and it is easy to get depressed and feel alone and isolated. Ive joined another chat board that has been very helpful and has pulled me through this mess. Having a support network is priceless!

907hopeful

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Re: New Here ~~~~

Post  sailor_moon on Tue Aug 05, 2014 8:54 pm

Welcome to the forum! Smile

Do you have any other symptoms besides the vulvodynia? How old are you?

What makes the doctor say that BC pills caused the problem? Has the doctor done a 4 week blood test? Doind a blood test once a week to see what your hormones are actually doing? Hormone imbalance can cause a lot of issues, especially if you have come off the pill. I am just about to go through this test nyself after seeing over 10 useless doctors who would not check my hormones.

If it is on your left side only it may be nerves, or it could be to do with an internal issue. There are so so many different things that could be causing it.
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Re: New Here ~~~~

Post  daisiesfordays on Wed Aug 06, 2014 2:26 am

907hopeful -
I'll definitely send you a message! I go to Dr. Brooks at AZ Vulva Clinic.

sailor_moon -
Thanks!
Nope, this is it. I'm 19. I had never had any issues before I took BC, and after stopping it for a month and applying Estrace cream to the opening, the q-tip test no longer hurt, just felt a little sensitive when I was swabbed, but no way like when I almost fell off the table the first time!
I went in yesterday, (his nurse had seen me about 3 weeks ago and noted that the skin was looking much better) and he noted there was a lot of redness and tenderness now. I think it may be due to my taking of spironolactone (anti-androgen). It was only after I started taking it that I started feeling uncomfortable again down there (after a month of feeling GREAT!!! I was able to use the 5th dilator in the pure romance set with very little pain, just some discomfort from the stretching) and I was doing some research today, it seems that the vestibule needs a balance of testosterone/estrogen, and my theory is that my testosterone level was already low, so the anti-androgen therapy (again, for my face  tongue ) could've reduced it so much that it was near 0! I'm debating getting a hormonal blood test done when I go in to get a shot at my GP on thursday. Although, am going to go see specialist tomorrow, just going to request the estrogen/testosterone compounded cream. He seemed perplexed and couldn't figure out how it could be the spironolactone, but apparently it's a new procedure to do a compounded cream of both testosterone and estrogen.
Oh, before I forget -- he examined me and said the sore spot on the left is my muscles spasming, so was prescribed a valium suppository. Helped a TON.

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Re: New Here ~~~~

Post  emalita on Tue Apr 05, 2016 1:56 pm

907hopeful wrote:I am on month 4 of treatment and would say I feel 75-80% better. Google him - Dr Fowler in AZ. His website seems a little quirky (more like a business than a dr's office), but he knows his stuff! He has me on a regime of anti-fungal, anti-bacterial and estrogen creams. Send me a message if you want to know more.

907hopeful - How have things been going since seeing Dr. Fowler? I just started week three of his treatment.

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Re: New Here ~~~~

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