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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.

Comments: 0

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 …

Comments: 0

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.

Comments: 0


New here, my story and looking for advice

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New here, my story and looking for advice

Post  rachiecakes on Wed Apr 26, 2017 9:02 am

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching and burning never subsided and since then I've had almost...a dozen negative swabs that show no sign of infection. I don't have redness, swelling or abnormal discharge...my vagina looks...completely totally normal. Unfortunately as you can imagine - the pain, burning and sometimes itch has never subsided. I have periods of relief, periods of mild irritation and sometimes times of terrible pain that makes it hard to walk. The pain is all over - not just my vestibule. Some days my anal area is so sore, around my clitoris and labia.. even my pubic hair hurts. Other times I feel almost normal and sex is normal etc. Sometimes it feels like I have a sunburn - it feels like the skin is so dry (even though it's NOT and theres no visible issues and I'm covered in coconut oil)

Again I get swabbed when I'm feeling good - all clear. I get swabbed when I'm in terrible pain - all clear.

The gynecologist I saw said "this will go away on it's own" but sometimes the pain is terrible!

I've done tons and tons of vulvodynia research and it does seem like all signs point to vulvodynia...but a lot of research says generalized vulvodynia happens more with older women. I already have IC so is my pain less likely to go away on its own? Has anyone had a similar story - or any helpful tips? I've changed all soaps, use coconut oil, wash with emollient etc. all those first line options. I've been researching meds but sometimes it all feels very hopeless. If I go on meds do I have to stay on them forever?

Thanks Smile

rachiecakes

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Re: New here, my story and looking for advice

Post  fairlight10 on Wed Apr 26, 2017 4:19 pm

I would stop all lotions and potions in that area firstly. I have been on nortriptyline 20mgs for 5 years.I have tried to drop to 10mgs but I get irritation start up again. 20mgs keeps me comfortable and sane. If I have to take it for the rest of my life then, I will. I could not go back to that pain again. Vulvodynia can affect the urethra as well as the other areas you have experienced this condition. It can affect females of all ages. Women who suffer fibromyalgia, migraine, chronic fatigue syndrome, irritable bowel, intersistial cystitis are likely to suffer with vulvodynia. All these conditions can be helped with low dose antidepressants. I hope this has been a help.

fairlight10

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Re: New here, my story and looking for advice

Post  PainBlogger on Wed Apr 26, 2017 8:33 pm

If you go on meds and find they work, you can always try coming off them after a period of time. The meds may break the pain cycle so not be needed forever. I've had good results with duloxetine. You can read my pain background here http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement to save me retyping. Smile

I really understand your frustration. It really is a horrible problem to deal with. But people do get better.

PainBlogger

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Re: New here, my story and looking for advice

Post  Hatty on Fri Apr 28, 2017 2:43 pm

Has anyone tried Gabapetin for pain?

Hatty

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Re: New here, my story and looking for advice

Post  mary jane on Thu May 11, 2017 4:40 pm

sounds like the nerves are irritated. You could go on a low dose of ami or nortriptyline for a period of time and it should subside. It takes at least 4 weeks for it to work..for me it took 3 months almost but the symptoms dissapeared
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mary jane

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Re: New here, my story and looking for advice

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