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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 …

Comments: 1

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


Newby not sure where to turn

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Newby not sure where to turn

Post  Cerjo87 on Thu Feb 01, 2018 3:32 pm

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 already the amatrimtaline and it didn’t work and I was not keen .  I’ve asked to be referred to a specialist to a proper clinic but she refused asking why I need to be referred. She said about seeking physiotherapist I asked if she could refer me for that again I got a no , apparently that is something I will have to pay privately for  which I can’t afford, I feel so lost and I’m so tired of it all now , it’s effecting my relationship with my husband, if anyone knows of any help there is out there I would really appreciate it , I live in the Oxfordshire area . Please help

Cerjo87

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GP

Post  VVSSufferer on Thu Feb 01, 2018 4:35 pm

Hey Girl! First of all, I'm sorry that this is happening to you.
I am also from England and faced some of the same problems as you, my GP refused to send me to a consultant I wanted.
The one she sent me to instead was terrible and left me in tears.

First of all, did you know you have a LEGAL right to choose your consultant?
'You have the right to choose a particular team headed by a named consultant for your first outpatient appointment, provided that the doctor referring you agrees that your choice is clinically appropriate. You can choose a team based at any hospital'

If your doctor does not refer you for treatment, say this is severely affecting your mental health and you will make a complaint to the CGC.
More info on that here:https://www.citizensadvice.org.uk/health/nhs-healthcare/nhs-patients-rights/
https://www.nhs.uk/chq/pages/902.aspx?categoryid=68&subcategoryid=162

Do you only have pain having sex/with insertion? Did you always have pain since your first attempt at intercourse? Is your pain constant? You may want to consider Surgery/Botox.

If you want to talk privately, feel free to message me Smile

VVSSufferer

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Re: Newby not sure where to turn

Post  sarisbaris on Tue Feb 13, 2018 6:07 am

I'm so sorry for your pain! I battled V for 15 years and I consider myself cured. Here's my blog. I followed the protocol by Anthony William. According to him cystitis is caused by an unknown/currently undectable strep virus. It can also cause vaginal burning. So I'm guessing you have strep. Don't worry about spending more money on doctors, they currently don't know what's going on. I've seen probably 20 western docs and countless alternative ones. Many of them were specialists and still had no clue.

Here's my blog...
http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

Here's more info on strep...
http://www.medicalmedium.com/blog/streptococcus-revealed

If you need to chat....
sarahcamp20@gmail.com

I had to do this by myself and I wouldn't wish that on anyone. Please reach out.
Sarah

sarisbaris

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Re: Newby not sure where to turn

Post  Cerjo87 on Tue Feb 13, 2018 8:06 am

Thank you for your message, I’ve been reading your blog and it dose nake some sense I suffer with irritable bowl and sinus issues, I suffer with really bad bloating as well . Although I have the feelings of cystitis the doctor tells me there is no infection they can see , but could that still be strep ? Also where can I get the ingredients for your drink please I’ve never heard of them ?

Thank you again x

Cerjo87

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Re: Newby not sure where to turn

Post  sarisbaris on Tue Feb 13, 2018 2:10 pm

Yes, it looks like you have strep. Yes the cystitis is strep as well. The doctors don't have the technology yet to detect these things. They've gotten a little better in 15 years during my battle but it's not good enough.

I actually might recommend something slightly different for you. Can you do me a favor? Email a list of your ailments (even things that you don't think are related because everything is related Wink plus a list of what you generally eat during the week. Break the food down into breakfasts, lunches, dinners, snacks and drinks. Strep feed on specific foods so you must remove those foods as well as take some supplements. It's not difficult but you'll be fighting strep in your kitchen Wink

I've been doing this for a few months with other women who are battling V and it seems to work better when I personalize something for them. I'm not a practitioner. I just fought my battle alone for 15 years and it was devastating. I'm just trying to help.

Sarah
sarahcamp20@gmail.com

PS - Start listening to more of his shows. I list the most pertinent ones to V on my blog. The more you know the better equipped you'll be to fighting this. All these viruses aren't strong, you just need to know how to kill them. I found that very true in my case.

sarisbaris

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Re: Newby not sure where to turn

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