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» 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

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris


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


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Post  doublej on Wed Dec 13, 2017 7:36 am

It's been getting to me a lot lately. The emotional pain of vulvodynia. It has made my sex drive plummet and that's affecting my relationship a little bit. On top of that I have a couple of friends that are trying to get pregnant and that just makes me wonder if I will ever be able to have that.

I have been struggling with this disease for about a year and a half now. I have seen four different doctors and tried too many different solutions to count. I've done different creams, pills, dilators, and even a physical therapist. The current doctor I am seeing "specializes" in this type of stuff but she still admits that it's really just trial and error with me. I am getting really worn out. I guess the hardest part about this disease is that nobody really knows why I have it or how to fix it.

I am scared that this is something I am going to have to learn to live with. That I have to accept that biological children may be out of the picture. That I may never be able to experience what sex actually feels like. I really need some encouragement or something to boost my moral.. I'm about ready to give up on trying to fix it cause it is so mentally draining...


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Re: Struggling

Post  PainBlogger on Wed Dec 13, 2017 12:26 pm

I can totally understand your frustration and fear that the pain will never go away. I felt like that for a long time. However, I am now in my last few weeks of pregnancy (achieved through natural means). So there is always hope.

Rather than me retype my history, you can read it here: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement if you want. Ignore the "four months" in the post title - it's been a lot longer than that now.

The most important thing I can say is don't give up. Try everything. Even consider re-trying things that may not have worked earlier in your struggle. It took me a long time to see progress from physio/physical therapy, exercises and dilators but it worked in the end in combination with medication. It takes so much patience and mental resilience to fight this condition and that is so difficult to maintain. Have you considered trying some psychological therapy to help with the associated anxiety? I don't know how old you are but for myself, being in my late thirties, there was extra pressure to get better quickly so I could TTC and that extra pressure caused extra stress. Which of course didn't help.

I hope you see some progress soon.


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Re: Struggling

Post  doublej on Thu Dec 14, 2017 3:19 am

I’m only 19, so there really isn’t a lot of pressure to have kids and so forth, but it’s still just exhausting. I’ve been with my boyfriend for 2 years now and can’t even have sex with him. I go to the doctor for exams and I burst out in tears from the pain of a qtip touching me.

I guess when I’ve been struggling with this it’s most difficult because I never see any progress. Nothing has made it remotely better, in fact it’s gotten worse than it was to start.

I just would like to be able to have a normal sex life, to start a family of my own, etc.

I’m just tired.


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Re: Struggling

Post  sarisbaris on Tue Jan 02, 2018 11:13 pm

Don't lose hope! Please read my blog. I battled V for 15 years and I consider myself cured now. And my pain was just like yours. It burned to the touch and actually it burned for no effing reason at all. And no, it didn't take 15 years to cure. It didn't take long, once I found the right advice. I have a husband, a healthy sex life and happy crazy toddler. Be careful what you wish for! Haha!

My blog explains all. And yes, you are correct. The doctors do not understand what's going on and facing that is scary. But don't worry. I healed. You can heal. And I understand your exhaustion. Being in chronic pain is draining, specifically on your adrenals. So we'll need to heal those as well. You're not making up the exhaustion.

Read my blog and let me know if you have questions. I have some topicals that might help the burning that will save your sanity while you kill the virus and heal your organs.



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Re: Struggling

Post  Mintaherb on Sun Jan 14, 2018 4:29 am

Did you start taking hormonal birth control around the time your pain started, or around 3-6 months before? If so, that could be the cause of your vulvadynia. It might be worth considering coming off it and seeing if things settle down. You can also apply a compounded estradiol/testosterone cream to the vulvar vestibule, which will help to correct the hormone imbalance caused by hormonal contraception.


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Re: Struggling

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