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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

» MAY HAVE FOUND A CURE- PLEASE READ
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

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

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

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


Any chance this could be something other than vulvodynia?

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Any chance this could be something other than vulvodynia?

Post  mythreesons on Wed Aug 20, 2014 5:45 am

I'm 45 and was diagnosed with vulvodynia 2 years ago. I was put on amitriptyline and vagifem and got the symptoms pretty much under control for almost 2 years, with just minor flare-ups whenever I'd have to wear a pad during my period. I weaned myself off the vagifem after the first 6 months and still didn't have a flare-up. Then in mid-June of this year, I started getting vulvar inflammation and burning again. I went back to my doctor (who is clueless when it comes to this condition) and renewed my prescription for vagifem and increased the dosage of the amitriptyline to 50 mg per day.

I have yet to get symptoms back under control and it's been 2 months now. I've been taking calcium citrate and magnesium and somewhat following the low oxalate diet, in addition to continuing to take the ami and vagifem.

I can have some days where I feel quite good and I feel hopeful. The last 4 days were good, but then today has been horrible again. I have had hemorrhoids since my first pregnancy 15 years ago and they seem to flare up too when the vulvodynia flares up. I also feel like I'm swollen inside. When this flare-up first started, I was definitely swollen outside, but now I feel like the swelling is all internal. Some days I can barely sit. I've also noticed the last few nights that the vagifem is difficult to insert, as though there is something at the top of the vagina preventing it from being fully inserted. Yet when I check myself with a finger, I don't feel anything abnormal, other than feeling swollen. So maybe it's just the swelling preventing the vagifem stick from going all the way in, I don't know.

I saw my doctor yesterday and I'm waiting for a referral to a gynecologist, which can take some time. This is probably wishful thinking, but I keep hoping this gynecologist will tell me the first one 2 years ago was wrong and I really don't have vulvodynia and that what I do have is very simple to fix. The thought of continuing to suffer with something for which there is no known cure just makes me so depressed.

mythreesons

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Re: Any chance this could be something other than vulvodynia?

Post  bearferret on Wed Aug 20, 2014 7:59 am

Are you in the uk? If so you can make an appointment at your GUM or sexual health clinic. They were so much more helpful than my doctor who told me to out up with the pain. Mine too felt swollen to me but my doctor told me it was normal. Sexual health doctor found my problem straight away. Amitryptilin was the first treatment but he said if itddidn't work there were other options. I cried in his office. It was a relief to have someone who wanted to help. Luckily amitryptilin worked but its only been about two weeks since I stopped taking it and I have a very understanding partner. Hope you get the help you need and deserve. X

bearferret

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Re: Any chance this could be something other than vulvodynia?

Post  mythreesons on Wed Aug 20, 2014 2:46 pm

I'm actually in Canada. I'm waiting to see the same OBGYN who delivered my kids and hoping he will be knowledgeable about this condition and be willing to keep at it until we find something that works. My current GP seems to have no clue how unbearable these symptoms are.

mythreesons

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Re: Any chance this could be something other than vulvodynia?

Post  bearferret on Wed Aug 20, 2014 3:00 pm

Hope they sort you. My GP was worse than useless as well. Hugs and support. X

bearferret

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Re: Any chance this could be something other than vulvodynia?

Post  sailor_moon on Thu Aug 21, 2014 11:31 am

There are many different health issues that give the same/similar symptoms as Vulvodynia. Vulvodynia can be caused as a symptom of a bigger problem going on.

Anything and everything from skin conditions to allergies (both contact irritants and food allergy), hormones, endometriosis, PCOS, low iron...so so many different things!

Have you got any other symptoms apart from vulvodynia? Does it get worse or better at different times of the month?
Have you had blood tests and ultrasounds ect?

Finding a decent doctor is the hardest thing. I'm up to doctor number 12! I am hoping he can fix me. I am undergoing a month long blood test to see what my hormones are doing. He is thinking my problem is hormonal as I have many other symptoms.

Do your research and see if there is a vulva specialist.
you can get a referral to. Find someone who specialises in vulva disorders.
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Re: Any chance this could be something other than vulvodynia?

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