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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

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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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 …

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Sat Feb 10, 2018 12:18 am by rockylife


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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

Sick of it

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Sick of it

Post  ElleJay on Mon Feb 11, 2013 9:05 pm

Ok so I probably don't have Vulvodynia in its truest sense. But I share your symptoms and Doctors refuse to give me an exact name.

I am 26, sex has always been painful but got worse the older I got and the more fed up with it I got, its near agony now. To add to this I have had unusual discharge my whole life. Every now and then I would seek help from my Doctor but its taken this long to get anywhere. I was told once "if it looks like thrush its probably thrush"......... Finally I found a nice doctor who confirmed once more I don't have thrush, that theres no obvious cause for my discharge and it may or may not be related to the pain (there was talk of possible internal scarring). So far treatment has been focussed on controlling the discharge, it looks like im using a weekly lotion for the rest of my life. Having just had another relationship end, I really am sick of this. I am a sexual person and I want a fulfilling sexual relationship, I am entitled to one. Having read about all of you using numbing gels I really feel that's my best shot. The pain feels like its about an inch or less inside. Like my muscles wont stretch properly like they should. Of course they do but its like being stabbed with a burning sensation afterwards. I have an appointment in 2 weeks and I will demand a numbing gel. I know there's mental issues with this, I have had psychosexual therapy but I feel the best thing for me mentally is to achieve full intercourse and see myself doing that. I also saw a gynaecologist when I was 21 who did an ultrasound and confirmed everything was physically normal.
I have also bought an expensive vibrator to help me relax and stay relaxed during insertation.
I really wish I had the courage to seek and demand better help at an earlier age.

Im looking forward to reading through all your posts.


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Re: Sick of it

Post  Alana3 on Mon Feb 11, 2013 9:08 pm

Do you maybe have vaginimus? That's muscles or does your skin actually hurt?


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Re: Sick of it

Post  jen007 on Mon Feb 11, 2013 10:28 pm

To me, It sounds like you have vulvodynia. In my case there was no visible sign of it..I didn't have a rash or irritated skin. I was told I had a perfectly healthy looking vagina. After seeing a few doctors vulvodynia was brought up. I was diagnosed about 3 years ago with provoked vestibuledynia. I have pain only when I'm touched down there, and it's only internal pain. I also have muscle tightness that I work on with dilators daily.

My suggestion for you is to join the NVA (National Vulvodynia Association) and find a specialist in your area. This site is very helpful, I will link it below:


You can only search for specialists if you are a member... you have to pay a donation to join, but it's worth it if you really want to find some good help. Also you could check your local hospitals for gynecologists. At one point I had run out of options with my one specialist and I was suggested by a family member to call my local hospital. They had 2 specialists in the maternity/ gyno. area of the hospital. I was so lucky!

Keep your head up! And good luck!



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Re: Sick of it

Post  raquelll on Wed Feb 20, 2013 7:57 am

Hey Elle,

It does sound like you have Vulvodynia...the same kind that I have! I also have the discharge, which based on all the reading I've done seems like it's called DIV (Desquamative Inflammatory Vaginitis). I have yet to really figure out what that means or what to do about that...

If you come across any info, let me know!


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Re: Sick of it

Post  carby148 on Wed Feb 20, 2013 11:59 pm

Sex has always been painful for me, and unless we really "work" at it, the times it's actually enjoyable for me are few and far between. Most of the time, it hurts when he's inserted in me, and I will suffer a burning pain when we're done. I often have to hold my vagina open to make it less painful, if that makes sense. I too do not feel like I'm able to open wide enough for him, even WITH lubrication. I always figured it was vaginismus, because even as a young girl I could not insert tampons. On the flip side, however, I'm able to insert a vibrator on my own without any pain if I'm masturbating, so I know a part of it has to be psychological (the pain).

Now that the doctor has diagnosed me with vulvodynia, I'm not so sure it was vaginismus the entire time, or maybe it was a combination of both.

I too have had unusual discharge since adolescence, never going a day without wearing a pantiliner just because I always have it. I was recently told to stop doing that, so I walk around with wet underwear daily. But I suppose the trade off is better -- I'd rather risk wet underwear than risk more yeast infections/pain.

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Re: Sick of it

Post  jen007 on Fri Feb 22, 2013 2:23 am


I totally understand how you feel. When my boyfriend and I used to have sex I couldn't even do it. Like I couldn't get him in. It was always so close to happening, but it was much too painful. I'd be left with a burning firey feeling and had to soak in a tub right away. It was awful. I recently had surgery so I no longer have that problem, but I know how it feels. I also had the discharge issue. I used to wear liners all the time, seriously it felt like I peed my pants or something. Somethings to try...change your underwear to 100% cotton if you haven't already. It's supposed to keep moisture away which causes yeast. Also try using an unscented soap like ivory soap. Some soaps can be irritating, but the ivory soap has been good to me since I've started using it. Even try using feminine wipes to keep the area extra clean.

Hope this helps!



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Re: Sick of it

Post  Sadgirl on Mon Mar 18, 2013 7:49 pm

I'm so sorry you are dealing with this horrible issue and can relate all too well. I empathize it's upsetting and angering at the sametime, I remember when I was first diagnosed I thought why does everyone else my age get to enjoy this? I want to, I have needs, cravings too, I want this, so why can't I do this without being in excruciating pain and lingering pain for days after? I haven't been diagnosed with vulvodynia, but I found this blog and the postings fit ALL of my issues to a T. I have been diagnosed with IC, intersestial cystitis and pelvic floor damage, however I'm and have been experiencing what you explained since my problem and diagnoses first stared. I went in several times thinking it was a yeast infection I seemed to get everytime I was intimate or tried to be but it never came up positive? My OBGYN also checked for STD's which where pretty unlikely I've only been with one person, although he has been with others in the past but still nothing. My Dr said it's so odd, it's almost like my body is acting like I'm having an allergic reaction to my husband, which I have heard can happen and you can actually be allergic to sperm however using birth control I've ruled thar out. I also am extremely careful about the lubricants I use, only a natural vagasil (like your own bodies natural moisture) and coconut oil, also we've switched to non latex condoms to try to help avoid any sensitivity I may have to any products we use. I don't know if any of this is helpful but although I have not been officially diagnosed with vulvodynia I just assumed these symptoms where part of IC and my pelvic floor dysfunction.


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Re: Sick of it

Post  geog272 on Fri Jul 05, 2013 3:19 pm

I have the horrible discharge and went through the constant assumptions by doctors that it's yeast. Turned out to be DIV (desquamative inflammatory vaginitis).


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Re: Sick of it

Post  Princess-j13 on Thu Jul 11, 2013 4:27 pm

I have the pain with all arousal too..I've done physical therapy, nerve blocks, and meds. My insurance doesn't cover Botox so idk what else to do. My pain is so bad that I can't work or go to school, last Sunday I was having spasms that were so bad it was like I was having a baby


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Re: Sick of it

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