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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

» 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

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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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.

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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 …

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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



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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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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 …

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New to Group, scared and depressed

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New to Group, scared and depressed

Post  Coldchris on Thu Jun 09, 2011 6:29 pm

Hi Everyone:

So glad to have found this site. This is my story. I had an UTI. After UTI, yeast infection, treated by diflucan, cream and OTC monistat. Did not get better. Many trips to dr. Treated shabbily. Went to Seattle (I live in Alaska) to a specialist who said I had a hyperimmune response to the yeast and had swelling and inflammation. Got some cream to use 2xs a day for 6 weeks to help get it in check. Mid way through, got an absessed tooth and had to go back on antibiotics (still on them). Had antibiotics (pro biotics to balance them), vicodin, advil, tooth numbing injections, etc. Urine was like acid I bet and really irriated the heck out of inflammed vestibule. Sitz baths and keep on the cream. Started using domeboro sitz baths but I think this may be trying out the rest of my skin. (Has anyone tried Aveeno?) I am struggling with this and feels like it just keeps coming. I'm scared, depressed and feel very alone. Go back to specialist next Wednesday. Did anyone else feel so overwhelmed and depressed?

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Forgot to Add

Post  Coldchris on Thu Jun 09, 2011 6:33 pm

Pain is in my vestibule. Was like razors, but the sitz baths seem to be helping, but seem to be itching on lips now. I'm about to have my period, does anyone else have flare ups around this time?

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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Thu Jun 09, 2011 7:29 pm


Welcome to the forum and hope you feel you can let out your feelings on here

I was recommended Aveeno by the Vulval dermotologist..am gonna deff try it. Got a huge bottle. She said that it helps to moisturise the area and get the vulvar used to touch and calm the nerve endings down.

Myself and if not every member has at some point felt extremley low and depressed. I didnt want to go on anymore. It is also a very isolating condition which is why I set up the forum in the first place. I'm sure if we all had sore and painful arms or legs we would feel more able to talk about it with others but because it is our sexual organ it feels so taboo to talk about!

Your not alone with us and if you wish we also have a secret facebook group you can join. Posts do not appear on your profile or newsfeed

Let us know how the steriod cream goes and try anything you feel may help you. A lot of this is trial and error and wading through tons of creams, meds etc until we can find the right combination.

Do not give up...I am managing better than ever now. Am on 300mg pregabalin and biofeedback as mine is most deff due to an unstable pelvic floor. I have even managed to start having sex again..so remember we can get better




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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Thu Jun 09, 2011 7:33 pm


Oh forgot to mention..I deff get flare ups just before my period and then around the middle to the end. This is very common in women with V. I think it is a combination of the hormones, womb cramps (im sure they gotta effect the pelvic floor) and the pads/tampons we have to use.

I use the softest pads I can find. The Always silk or Boots cottons seem to work best.

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Re: New to Group, scared and depressed

Post  Sarah001 on Thu Jun 09, 2011 7:36 pm

Yep the antibiotics, yeast treatment, UTI all sound alot like how some of us started with this. I for one got to the point where I didn't know how to go on with this pretty quickly but found learning alot about the subject helped. Read books such as Amy Stein Heal Pelvic Pain or When Sex Hurts and you'll soon see you're far from alone in this. Definitely get your pelvic floor checked too, I've been doing something recently to my tight pelvic floor that helps quite a bit so like Sebby I'm in the hypertonic pelvic floor group.

And Sebby, holy moly you're having sex now? Fantastic! If I get to that stage I'm wondering where I'll find someone to actually have sex with! Laughing
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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Thu Jun 09, 2011 7:47 pm


Yeah, I found a fella! ...really dunno how I did that! Well actually we were flirting at work and I drunk texted him one evening and it all went from there lol

We only had sex a few times but I am managing to relax more and more. I still havent got hold of the new biofeedback sensor. Havent got back to Dr Glazer yet to say it not turned up yet.. yeah its naughty of me..the boyfriend kind of distracted me!

I did tell him I get pain etc and explained I couldnt always have sex etc...he dont seem to mind anyway and he like the kindest man I have ever met!

cheers


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Re: New to Group, scared and depressed

Post  gem123 on Thu Jun 09, 2011 8:16 pm

hi i have just got back from a appt with a dermotologist and she has also said the same to me about thrush so i will be starting of a 3 mth treatment soon, i know how you feel i have been really down the last few weeks but i am feeling a bit more positive i have just ordered the aveeno oatmeal satchets to try i will let you know what there like, i just wanted to say you are not alone and thinking about you

gem xx

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I think we have all been there

Post  annaCA on Thu Jun 09, 2011 8:56 pm

I think we have all felt depressed, lonely, and fear that the pain will get worst. I know I felt it this past week as on top of v, I got a possible uti and have cramps from my period. I definitely get worst right before my period and right after. It is pretty exhausting going to all the doctor appointments and trying out new medication and dealing with the side effects. This board has definitely helped me even just by reading other people's posts and knowing I am not alone in this and that although we each have a different story, we have a lot of similarities. It was really helpful for me knowing I wasn't a freak and that more people than you think have this condition. I am trying to take each day as it comes which I feel is harder than it sounds. Hope you are feeling better!

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Re: New to Group, scared and depressed

Post  Coldchris on Thu Jun 09, 2011 9:51 pm

This just feels like hell mentally and physically. It has knocked me for a loop. It's just too much. I am normally happy and outgoing, but this is making my life miserable. I work full time, have a five year old son (very best thing), a supportive husband, but how much more can I do here? I'm trying things, following doctor's orders, and I'm just feel beaten.

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Re: New to Group, scared and depressed

Post  Coldchris on Fri Jun 10, 2011 12:30 am

Would love to join facebook group, sebby! Love it.

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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Fri Jun 10, 2011 7:25 am


I have inboxed you with details regarding the facebook group Smile

Take one day at a time, sometimes thats all we can do and know that when we get the real bad flare ups it will calm down..Im on my period at the moment and OUCH! I cant use the softer pads at the moment as I am real heavy and these big old pads are rubbing! Shocked

In the meantime we can at least support each other and have an outlet for our feelings knowing that others know exactly how you feel Smile




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It's ok!

Post  Louise on Tue Jun 14, 2011 10:57 pm

We are all here for you & yes your story sounds a lot like how mine started! You are not alone I can totally relate to how you feel ! x x x

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Re: New to Group, scared and depressed

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