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» Acupuncture advice please
Yesterday at 6:08 pm by fairlight10

» Please tell me this can get better
Yesterday at 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

Wed Feb 14, 2018 3:33 am by Athena


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


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

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

Hello, my name is medical mystery

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Hello, my name is medical mystery

Post  coline83 on Sun Sep 19, 2010 1:08 pm

Hello everyone,

my name is Coline and I've been suffering from vulvar pain for 7 years, on and off. I had many diagnosis but for the past 3 years, it seems that doctors ran out of ideas. My current gynecologist made me do blood tests, I had a PAP test and everything looks perfect! There seems to be absolutely no reason that could explain my constant burning and stinging/itching on different areas of my vulva. So my doctor said, and I quote: "I don't know what to do with you". I was treated for yeast at least a hundred times, I was told I had genital warts, which was probably true but couldn't explain the intensity of the symptoms. And now, the warts are gone and the symptoms are still here. Funny enough, they can disappear for a moment when I'm sexually aroused but they come back soon after. If I'm lucky. If I'm not, I just won't be able to have sex. The pain has been present for a year now but before that I had a one-year break. Before the one-year break, it was slightly annoying but ok. Before that, it was one or two weeks per month. And now we're back to that and I can't think of anything (psychological or situational) that could have triggered this. I tried to stop going to the pool once a week, I tried to change my diet, I tried to stop biking, nothing changes.

Several doctors heard my story and admitted they didn't know what I had but refused to look further and just sent me back home. I have an appointment coming at a specialized clinic (VUVO for vulvo-vaginal disease) in Montreal, where I live, in december. In the meantime, I tried acupuncture to release the pain but the treatment actually suppressed all sensation in my vulva, which is even more disturbing than the pain cause now I feel numb and unable to be aroused. I stopped the treatment and just hope it will come back soon.

I read the V book and I found my symptoms to be very similar to what she described as vulvodynia ( gynecological exams really hurt, I can't use tampons, etc...) but as long as I'm not diagnosed, I'll get no treatment.
Does my story sound familiar to anyone? Am i crazy to think it could be vulvodynia? Does anyone know a specialist in or around Montreal?
My apology for this way-too-long post...

To end on a positive note, my fiance is very understanding and involved in my quest for an answer so I have plenty of support from him. Looking at the bright side....

Thanks to you all

Coline I love you


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Re: Hello, my name is medical mystery

Post  Husband on Sun Sep 19, 2010 3:58 pm

Hi Coline,
Sounds like vulvodynia. Can you provoke pain by a slight touch with a cotton swab? If this caused pain and if the doctors have no ideas any more than you have the diseases name.


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Re: Hello, my name is medical mystery

Post  Sarah001 on Sun Sep 19, 2010 5:26 pm

Hi Coline, it certainly sounds like vulvodynia but it would do because that just means "pain in the vulva"! It's quite interesting acupuncture made the area numb, I'd say that points to at least partly a musculoskeletal problem and perhaps over time more acupuncture might help restore normal sensation? I haven't tried it myself but it seems pretty hopeful that it changed the sensation. The other thing that springs to mind is an overabundance of lactobacilli, it's not common but tends to present in a pattern of a couple of weeks a month where there's pain. Not many doctors think to look for too much good bacteria but it can upset the balance just as easily as not enough good bacteria. Have you ever had antibiotics and found the problem improves while you're on them?

Anyway, welcome to the forum.

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Re: Hello, my name is medical mystery

Post  Sebby (Admin) on Mon Sep 20, 2010 7:13 pm

Hi and welcome coline

It does sound like Vulvodynia which as previously said does just mean pain in the vulva!

How did they treat your warts? I have read in the vulvodynia survival guide by Dr Glazer that the treatment for warts have been shown to "irritate the vestibular are futher" ...Trichloroacetic acid (TCA) and lazer surgery. but it is not thought that the HPV virus itself is linked to developing Vulvodynia.

Sebby (Admin)

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Re: Hello, my name is medical mystery

Post  jules on Tue Sep 21, 2010 2:49 am

Hi Coline,

Read our stories....you have very similar symptoms. Also, I suggest you read the support and advice section. We all share different treatment techniques we have used. Many of us are on medication, ie: Amitrip., Lyrica, neurontin, vicodin (for pain) etc. some have tried physical therapy, spinal blocks, acupuncture (like yourself), botox, etc. There are a number of treatments for this nerve pain. you will also want to rule out a skin disorder w/ a biopsy. It sure does sounds like Vulvodynia. I live in Minnesota. So, I don't know of a doctor in Montreal. But, it sounds like you are heading in the right direction. In my opinion, you may benefit by going on meds for the nerve pain and then physical therapy for the pelvic wall muscles. Good luck. We are here for you.


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Re: Hello, my name is medical mystery

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