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» Acupuncture advice please
Yesterday at 11:27 pm by infinitelywondering

» 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

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


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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

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

New and Feeling Down...

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New and Feeling Down...

Post  orchid27 on Wed Jan 01, 2014 12:20 am

I have suffered with pain for over 7 years. I married an amazing man 3 months ago who has been with me since before the pain started. I have provoked vestibulitis and underwent a vestibulectomy last week. The recovery is smoother than I expected, but what I didn't expect is the emotional toll. I am afraid my surgery will fail, I'm afraid I will will have to have another surgery if this one doesn't work. I am most affected by the ups and downs of the recovery; one day I feel great, the next day I feel like total crap. Lying in bed all day alone for a week is taking it's toll. I made a blog to try to help other women know what to expect who end up having the surgery, but sometimes I could really use some extra encouragement. My blog is at privatepainsupport. wordpress. com if you want to know about the surgery and recovery. Words of wisdom and encouragement would be such a help. I just want to smile again.


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Re: New and Feeling Down...

Post  Leslieg on Thu Jan 02, 2014 9:48 pm

Hi Orchid,
I hope you are feeling better today. I feel like the emotional toll of this might be worse than the physical pain for a lot of us. You are not alone in your emotional ups and downs. I struggle with this as well even after 5 years. My coping skills seem to be depleted. However, when my downs get severe I am forced to dig really deep within and somehow rally again. This is not easy, but we all have reserve somewhere. Allow yourself some time to feel bad about it.....you have every right. Then do something that you enjoy. I have different issues than you so I cannot offer specific advice. I just wanted to write and wish you well. I hope and pray for you that the surgery is the answer.

It's frustrating that so many of the websites re: V state that there is no cure. I would love to have the time, ambition and power to change that. Whenever I read that in a piece of literature I just want to flip off my computer :-0! It just isn't true and none of us should give up in finding our own cure. So many success stories I've read have happened 'by accident or by chance'. I hope/wish the medical field would pay attention to this.

You are an incredibly strong woman and will get through this. Try to stay positive and do whatever you need to feel happy and warm inside. You are healing. The smile is still there!


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Re: New and Feeling Down...

Post  Fingerscrossed on Fri Jan 10, 2014 10:14 pm

I had a vestibulectomy on Dec 17 for provoked vestibulitis, so I understand how you're feeling. You might even be feeling great now! I'm slightly past the three week mark and have been feeling wonderful. I was very tired of lying down all the time too because I wanted to move around and leave home. Unfortunately, I live right on a hill, so I can't really walk anywhere. If I go up the hill, I have to walk down and visa versa. I would also not recommend taking stairs for a while, even at the three week mark. I did my second checkup yesterday with my doctor and he said I shouldn't be doing that yet, after I told him I walked up three flights to get to the office because I wanted to get some exercise. He said that everything looked good and that I need to keep taking sitz baths, which I hate doing because it feels weird.

I have also been feeling those same concerns about the surgery not working. I've been told there is a 20% chance that the surgery won't work. When I was lying in the hospital bed by myself before the surgery, I started crying because I was afraid it was all going to be for naught and I felt so lonely. I know that if it doesn't work, I'm going to cry a lot and my husband probably will too because we want to be a normal sex crazed couple. Botox is super expensive and typically isn't covered by insurance. Even if it doesn't work, there are other options. I've thought about doing chiropractics because I've had back surgery and thought that perhaps I had a pinched nerve.

I hope you're feeling better!


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Re: New and Feeling Down...

Post  orchid27 on Tue Feb 04, 2014 8:59 pm

Thank you ladies! I just wanted to update and say I am doing better. I had a q tip test at my 4 week appointment with no pain! I am working with the dilators now with poor success and am having some struggle with physical therapy. Just trying to remind myself that it is a journey. I get so lonely being home all day by myself. I wish there was a face to face support group! Emailing back and forth with others has been extremely helpful though mentally. All your stories are so similar to mine, it is comforting knowing I am not the only one dealing with this.


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Re: New and Feeling Down...

Post  Alana3 on Tue Feb 04, 2014 9:06 pm

Yeah I had a vestibulectomy last year trust me what youre feeling is all normal!!!!


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Re: New and Feeling Down...

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