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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

Don't want to be here....

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Don't want to be here....

Post  Amy on Mon May 23, 2011 3:42 pm

but I'm glad there's a support group for this condition. Here's my story (I'm sorry if this is tmi):

Up until Jan. 2009 I had never had a uti and up until Aug. 2010 I hadn't had yeast infection in 10 years and I had never had a vaginal bacterial infection. In Jan. 2009 I started using Nair for the bikini area and I don't know if it was the Nair itself or just being hairless down there, but I started getting uti's and had 3 or 4 of them between Jan 2009 and June 2010. Last July I had 2 uti's back to back and thought I was getting a third one right after finishing the antibiotics from the second one, but it was just a really bad yeast infection. The yi I had before were just the minor itchy kind, but this was a deep burning. The day after the symptoms of this yi started I found out I was pregnant with our third child. With our 5yo son and 3yo daughter we had to go through everything short of ivf to get pregnant with them. We weren't sure if we wanted a third, but we knew we didn't want to go through fertility treatments, so we decided to leave it to God. I didn't think I could get pg on my own, so I didn't give it much thought and decided we would only have 2 kids. Well, God blessed us with our third son and with his pregnancy came all of my problems.

Throughout the pregnancy I constantly battled yi and bacterial infections. Even when I was infection free I still had redness inside the vestibule (I think is what it's called, not on the labia, but running from the opening to the vagina to the clitoris) and pain. The pain at first was unbearable and almost drove me to suicide. I laid in bed and cried all day. Over the course of the pregnancy it became more bearable and I was able to function as if it wasn't there with the exception of intercourse with my husband. I still cried just about every day. If I went more than 2 days without crying it was a miracle. I was so scared that the pain would not go away with childbirth. My obgyn was certain it was hormone related and would go away with birth. I was so scared that it wouldn't and I was scared that I would resent/hate the baby because of the pain and that my dh would leave me for lack of intimacy. I was also diagnosed with gestational diabetes when I was about 28weeks along, which I hadn't had with my first two.

Well I'm almost 7 weeks post partum now and the pain didn't go away. When all the normal postpartum stuff started healing up properly and I realized that old pain was not going away I almost went off the deep end emotionally. Between the anxiety of this pain and post partum hormones, it was a very scary time. But I was aware enough of my emotional distress to ask my dr for an anti-anxiety rx. He prescribed me paxil and that has been a life saver, almost literally. I'm actually happy now despite the pain. I haven't cried in well over 2 weeks now. I feel normal again. I haven't felt this normal since before I got pregnant. The dr also prescribed me percocet to help relieve some of the pain and I started out taking it 2-3 times a day, but now I'm taking it once a day and trying to wean myself off. At my 6 week post partum check up the dr. told me I had a "little bit of vulvodynia" from all the infections I had early on in the pregnancy and gave me a steriod cream to use. I've been using it for a week (suppose to use it for 4) but I'm not seeing any improvements. Not only that, but when I put it on, it burns for about an hour or so afterwards. I don't know if it's me touching it that burns, or if it's the cream itself. Anyway, I'm breastfeeding the baby (who I just love and adore and do not associate with my pain at all) and when we're done with that I'm going to make an appointment with a pelvic/vulvar pain clinic that's a couple of hours away from me.

Thankfully my dh has been such a rock and a support. He's been so loving and caring through all this. I don't think I would be alive right now if he had been a jerk through this whole thing.

I've been lurking here for a while because I suspected vulvodynia early on. My pain is a constant burning that kind of moves around from near the opening to the clitoris. When the dr exams me, it doesn't hurt when he touches me, but it burns afterward. I haven't tried intercourse since the pain started, but I told dh (who is still recovering from a vasectomy) that when he's back in service I want to try it. I'm scared to try, but maybe if I take a percocet before hand and use lots of lubricant it won't be too bad.

This whole ordeal has taken a huge toll on me emotionally, psychologially, spiritually (I'm Christian) and physically. Thankfully the paxil and percocet help a great deal.

Do any of you take prescription pain meds to deal with the pain? I know they're addicting and I worry about that, but just a few hours of no pain does wonders for me. over the counter pain meds don't work.


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Re: Don't want to be here....

Post  noni on Mon May 23, 2011 10:02 pm

Hey Amy,

Although I cant really comment on the pregs aspect of your story....I still can identify with the V struggle.

Pain meds? Ummmm from what I have read and from people I have spoken to about this...pain meds do not generally work for neuropathic pain...which basically most of vulvodynia is caused by. Again, vulvdoynia only implies vulvar pain...due to any number of causes but nonetheless still pain. But vulvodynia is not you regular, garden variety pain...nope its rather chronic and despite "normal" tissue appearance there is still that ever present burning, stinging, acid pain.

I had thought peharps I had a skin condition...but nope! Here I am 50mg of Amitriptyline (an SSRI antidepressant circa the 1960s) and I am getting "better". Some days even feel "normal" again.

Amy, look into a pain clinic or vulva clinic...regular Gynes dont know how to treat pain...especially vaginal/vulvar pain!!!!!

Im sure you have made yourself familiar with all the wonderful wisdom the fabulous ladies share on here ...

...we arent docs but we sure know a hell lot about this than they ever will. We live with this shite everyday. Not them.

Take care,


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Re: Don't want to be here....

Post  Sarah001 on Tue May 24, 2011 10:04 am

If it is genuinely neuropathic pain medication should work pretty well. It's harder to get the meds to work when there's a muscle issue/mechanical issue. I still wouldn't rule out hormones in your case though, your body will take time to normalise (as you know after 3 babies) so it could still go away on its own. Be careful of the steroid cream, I was told if it didn't work in a week it probably wouldn't and to stop using it so I didn't thin the skin so be wary of that. I take 50mg of Ami which doesn't help me much at all and 200mg Pregabalin which helps some and I'm about to up that to 300mg. We're all different and some people get full pain relief from meds and others don't.

Isa Herrera's book Ending Female Pain has a section about post partum pain but from what I can see apart from avoiding any recent scars etc it's pretty much the same stuff as women who haven't given birth so that might be worth a read if you can get it in your library or buy it online.

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Re: Don't want to be here....

Post  Amy on Wed May 25, 2011 7:14 pm

Thank you both! I'll definitely check out that book and I do plan on making an appointment with a clinic after in done breastfeeding. Hopefully this won't stick around very long!


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Re: Don't want to be here....

Post  Sebby (Admin) on Thu May 26, 2011 7:55 pm

Welcome Amy to the forum, im so glad you felt you could share your story with us.

I can so relate to the mental suffering that having vulval pain brings..when it all started and drs were telling me it was all in my head or just saying there was nothing they could do I really wanted just to end it all. I am seeing a counsellor and have found it so helpful.

I also recommend the book that Sarah suggested. I am currently going to try the pilates..apparently it helps to relax the pelvic floor muscle...have just bought my Gym ball..just gotta inflate it!

I am on Pregabalin 400mg now..have currently been unable to do the biofeedback (Dr Glazer) due to a dodgy vaginal sensor and am awaiting my new one...ARGHHH!! am getting right fed up as it seems to have got lost between New York and London!!

Anyway dont give up as there is a lot of things you can try..I was at my best when I was doing the biofeedback and with the Pregabalin combined

As for sex dont rush into intercourse at first..try lots of foreplay and get your vulval used to that

Good luck and dont give up!!


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Re: Don't want to be here....

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