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» VULVODYNIA AND SUICIDE
Yesterday at 11:20 pm by Faezeh

» a video for you guys
Yesterday at 2:53 am by lavrose

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Yesterday at 2:45 am by lavrose

» New and need some help
Fri Feb 23, 2018 1:12 pm by fairlight10

» Acupuncture gave me my life back!
Thu Feb 22, 2018 11:25 pm by Bx11

» Anyone from New Jersey
Thu Feb 22, 2018 10:47 pm by LindafromNJ

» vaginal cream
Thu Feb 22, 2018 10:46 pm by LindafromNJ

» Acupuncture advice please
Thu Feb 22, 2018 2:25 am by ryn207

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

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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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

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vaginal cream

Thu Feb 22, 2018 10:46 pm by LindafromNJ

I have been given ABC cream to start using for my condition. This is gabapentin, amitriptyline and baclofen cream. Has anyone tried this. Also has anyone used lidocaine. My doctor told me not to use it. It is so sore at the vaginal opening. Has anyone used it there. Please respond!!

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MAY HAVE FOUND A CURE- PLEASE READ

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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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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.

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Vulva Specialist Given Up!

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Vulva Specialist Given Up!

Post  Sarah001 on Mon Dec 12, 2011 6:26 pm

As some of you know I've been seeing a Vulval Specialist who is also a Vulval Dermatologist and I've been back today for an update, my medications aren't working well despite being on nearly the full dose of Lyrica and 50 mg of Ami and she's admitted she doesn't think she can help me anymore. Apparently if meds are going to help they normally do so at much lower doses than I'm on and if they don't help she refers people elsewhere. Because I have a joint condition that affects pelvic stability she has decided to send me on to a gynae who has a team of vulval specialist physios working with him. Unfortunately it means I have to travel alot further which will require me to get a lift from someone (don't know who I can talk into that!) and I still have my appointment next week with a WH physio who is a bit closer to home so I'm feeling good in one sense that I'm going to get more help but terrified at the same time that I'm going to prove beyond anyone's scope because of my other problems. I told her I didn't think meds would help me but wanted to give them a try and she basically said she'd never seen a case as severe as mine that was also so resistant to medication which is scary. Fingers crossed someone out there can help me and I'll update when I get my appointment. Feeling a bit scared right now! pale
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Re: Vulva Specialist Given Up!

Post  skippypie23 on Mon Dec 12, 2011 8:03 pm

I'm so sorry Sarah Sad I've had so many doctors just misdiagnose me or say they don't know what I could have and give up, so it's at least a positive thing that you have been able to find some actual specialists.

I was thinking that perhaps medicine may not be the way to go for your body, and that you should look into some possible natural cures along with physiotherapy? I am currently looking into the raw food diet (a little harsh i know) and the yeast diet. It may have to do with your body's acid levels or your reactions to different foods. I'm actually going to try getting a food allergy test to see if I am allergic to yeast or anything else. I don't know if you have already considered these things.

Please don't give up; we shouldn't have to live like this or put up with it at all Razz


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Re: Vulva Specialist Given Up!

Post  lolainslacks on Tue Dec 13, 2011 12:02 am

I'm so sorry Sarah, that must have been such a blow to hear. Do not give up though. Just because this one person doesn't know how else to help you, doesn't mean there isn't anyone who can. I know this may not be a helpful suggestion, but have you tried acupuncture? I haven't yet ztried it but at my last gyn appointment she suggested it as an option. She told me that apparently there are many women who have been completely cured by acupuncture. I know it seems like an impossibility, but it's worth looking into I think. Wishing you all the best.

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diet

Post  Melissa777 on Tue Dec 13, 2011 2:59 am

you know- i think diet elimination is KEY
I tried the yeast diet for a year- did nothing for me

so im starting to think- this isnt yeast related, its pH related. I think the raw food diet makes sense... but its hard- start out slow and do it in baby steps

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Re: Vulva Specialist Given Up!

Post  Sarah001 on Tue Dec 13, 2011 12:26 pm

I came out of the appointment thinking at least I'm being referred on but on the way home started to worry about what if the next person can't help me either? Pain meds were supposed to be a last resort for me that I got talked into trying earlier because of the amount of pain I'm in so it's like I've had the rug pulled out from under me. Some of you members who've been here a while will already know about my other complications and diet isn't going to give me new ligaments so diet just isn't the answer for someone like me, I've already done the low ox diet with no help and the anti inflammation diet too which works on the principle of removing acid from the body and that didn't help either. Mine's definitely musculoskeletal and revolves around the pelvic problems I've had for many years and obviously an unstable pelvis along with a pelvic floor hanging on for dear life is going to be difficult if not impossible to rectify because treatment for one makes the other worse. I'm literally pinning all my hopes on the new physio I'm seeing next week (snow permitting) which means if she sends me on my way I'm going to be devastated. I'm sure my resting tone is up again because I've had the worst year of my life and so much stress I'm surprised I'm still ploughing on every day. It's a very worrying time and I can feel depression lurking over me.
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Re: Vulva Specialist Given Up!

Post  naomi on Tue Dec 13, 2011 5:47 pm

sod that sarah! theres no way we can give up now...we've come too far!!

I know its a blow when they pass you on to a new specialist. I think after my 10th I was thinking "shite!" but if I dont keep plodding onto the next then theres just no point in fight it and trying to get better.

have u spoken to alana (not sure what alanas nickname is on here, or if she is still on here re: ketamine. she uses this orally (i think) and has given her so many more days of less pain. She said its not the answer but is helping so much with pain relief.

hope ur ok chick! xxxxxx

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Re: Vulva Specialist Given Up!

Post  Sarah001 on Fri Dec 16, 2011 5:47 pm

I'm crossing everything the new physio I see next week will be good, she's had some rave reviews from various people I know but none of them had V so we'll see. Nervous...
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Re: Vulva Specialist Given Up!

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