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    » 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

    » Coping with Vulvodynia
    Tue Feb 13, 2018 3:55 pm by NaughtyNanny

    » Newby not sure where to turn
    Tue Feb 13, 2018 2:10 pm by sarisbaris

    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


    Help- just diagnosed

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    Help- just diagnosed

    Post  raffles32 on Mon Oct 29, 2012 11:58 pm

    Hi there- I am a 30 year old based in the UK. Since I started having intercourse at 19 I have had issues with painful sex. I finally got to the point where I would tell boyfriends I simply couldn't have sex and lost a lot of relationships that way.

    I am with a guy now and we have been together for 4 years. I was upfront with him but after 4 years its driving him mad and yet another relationship is on the rocks. I simply have no libido due to sex hurting and avoid it when possible..this obviously hurts him even though he knows its not his fault.

    Anyway- I have been to the GP, tried lidocane, steroid cream, aqueous cream, different lubricants etc..nothing works...so she sent me to a Gyno..who poked and prodded me- soo painful! and concluded I have vestibulosis or provoked vulvodynia. He explain two of the four glands were extremely sensistive and caused pain at the lightest touch and that modern medicine sadly couldn't help me as there is no cure!

    I feel totally lost...I feel like I have been handed a death sentence for my realtionship and any future ones. I mean who would want to spend the rest of their life with someone who can't have sex..I know I wouldn't want to!

    I feel so very low. I have been on the depo injection for 10 years and I was hoping he would say it was that. Although he said there would be some merit in changing birth control, he didn't say that was likely to be the problem :-(

    raffles32

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    Re: Help- just diagnosed

    Post  Loulou on Tue Oct 30, 2012 10:31 pm

    Hi Raffles

    So sorry to hear that you are suffering and feeling low. We can certainly empathise with you here. And i must admit i feel like slapping your gyno! Being defeatist about this condition isn't helpful. Its not a straightforward condition so agreed, there isn't ONE cure that fits all but it is possible to improve and some women do find their 'cure'. (you just hear less about these cases as they are presumably getting on with their lives rather than participating in forums like this)

    On a practical level, I don't have the vestibulitis form of vvd so am not best placed to give you any pointers on that but reading other women's comments here it seems some have found some relief and progress through densitisation techniques with dilators (i'll let the 'experts' here comment more on that). Also have you had yourself checked by a women's health physio? A tight pelvic floor can be a factor.

    So don't give up hope - it doesn't have to be a death sentence for your relationships. There are good men out there - some of us here can testify to that.
    x

    Loulou

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    hi

    Post  raffles32 on Tue Oct 30, 2012 10:56 pm

    Hello

    Thanks for this. I am pleased there are forums like this or it would be even worse not knowing others understand. Its not really the best topic f conversation with your friends and family!!

    I have absorbed a lot of info over the past 24 hours on the internet and you are right, I shouldn't give up hope and I am going to fight. I am going to go back to my GP and insist that she looks further into a specialist in this area as opposed to just a general gyno and she is actually a very good GP and has been doing her own personal research so I am sure she will be receptive!

    As for the relationships- I guess I have to face that my current one is likely to end as we have already nearly broken up so many times over this ad having a 'no cure' solution could be the final nail. I suppose I am just scared of the concept of dating again and havingto drop the bombshell! Its not the most appealing characteristic in a girlfriend..but also I feel sad because I see all the movies and Tv shows I love and see scenes with sex and the passion etc and know I will never have that

    raffles32

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    Re: Help- just diagnosed

    Post  Alana3 on Thu Nov 01, 2012 8:44 pm

    Have you tried any sort of treatment yet? When did yours start? And where are you from?

    A change of attitude will help (I am saying that nicely not bitchy). If you say never it really NEVER will happen. But if you arm yourself with as much information as possible more than likely you will find something that will help. I have had this for 4 years and was enjoying sex for a few months until we broke up. But please be as positive as possible, it will not help if you sit around and mope (coming from someone who has been there). There are "cures" surgery being one of them, but try all the little things before the big thing. I hear surgery is good (and am going in for mine in December).

    That being said, I know what you're feeling and it does suck, this isn't easy and it's frustrating and it hurts! So I do understand... But you can let it control you or you can control it. You're both living in the same body so... you get the point I'm sure.

    Changing my attitude really helped, and I started exericse and eating better my pain factor went down. Don't listen to that doctor there ARE things you can do and you WILL feel better and yes, enjoy sex again. Right now I'm in the same boat, and it does hurt, my last pelvic was absolutely horrible! But we were at the end of options so I voted for surgery after he suggested it. Remember, there is ALWAYS something you can do and you CAN fight it! Please don't give up!!! This forum is also good for the morale because you realize you aren't alone. And you aren't you can message any of us anytime and we're happy to help you.


    Alana3

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    hi

    Post  raffles32 on Thu Nov 01, 2012 9:16 pm

    hi

    thanks for the reply. I am trying to stay positive but its hard as don't have a very supportive boyfriend . I am in bristol and have tried steroids, lidocane, tablets and aqueous cream but nothing worked. definitely going to talk to the gp about surgery and estrogen as not gone down those routes

    raffles32

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    Re: Help- just diagnosed

    Post  tandaschroeder on Thu Nov 01, 2012 9:31 pm

    raffles32 wrote:Hi there- I am a 30 year old based in the UK. Since I started having intercourse at 19 I have had issues with painful sex. I finally got to the point where I would tell boyfriends I simply couldn't have sex and lost a lot of relationships that way.

    I am with a guy now and we have been together for 4 years. I was upfront with him but after 4 years its driving him mad and yet another relationship is on the rocks. I simply have no libido due to sex hurting and avoid it when possible..this obviously hurts him even though he knows its not his fault.

    Anyway- I have been to the GP, tried lidocane, steroid cream, aqueous cream, different lubricants etc..nothing works...so she sent me to a Gyno..who poked and prodded me- soo painful! and concluded I have vestibulosis or provoked vulvodynia. He explain two of the four glands were extremely sensistive and caused pain at the lightest touch and that modern medicine sadly couldn't help me as there is no cure!

    I feel totally lost...I feel like I have been handed a death sentence for my realtionship and any future ones. I mean who would want to spend the rest of their life with someone who can't have sex..I know I wouldn't want to!

    I feel so very low. I have been on the depo injection for 10 years and I was hoping he would say it was that. Although he said there would be some merit in changing birth control, he didn't say that was likely to be the problem :-(

    Hey Raffles! I didn't read any of the replies--maybe I should have so I don't repeat anything anyone said. however, I just want to tell you not to give up. There are SO MANY doctors that are unaware of this condition. I've been to plenty of them who tell me there is no cure. I found a specialist that is amazing. In every way. I have also been talking to some ladies on here that have told me that surgery brings 85-90% of women a cure. THERE IS a cure. I have heard so many amazing cure stories. You WILL get through this. But maybe in the UK, doctors aren't as aware? I'm not really sure. But I am currently questioning surgery.

    tandaschroeder

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    hi

    Post  raffles32 on Thu Nov 01, 2012 9:53 pm

    Thanks- I am definately going for a second opinion...the gyno I saw was rubbish but my GP has been amazing. i would be really interested to hear from any women who had success with surgery- dis you say you spoke to them on here??

    raffles32

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    Re: Help- just diagnosed

    Post  tandaschroeder on Thu Nov 01, 2012 10:00 pm

    raffles32 wrote:Thanks- I am definately going for a second opinion...the gyno I saw was rubbish but my GP has been amazing. i would be really interested to hear from any women who had success with surgery- dis you say you spoke to them on here??

    I have mostly read. Here is a forum section I found helpful:

    http://www.vulvodyniasupportforum.com/t702-i-got-the-surgery#4590

    I am in your same boat. And am seriously miserable.

    tandaschroeder

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    Re: Help- just diagnosed

    Post  kalinikta77 on Mon Nov 05, 2012 2:49 am

    Go find a new doctor. Now. Find one who specializes in sexual dysfunction, pelvic pain, etc. When my gyno gave up, she recommended a sex therapist who diagnosed me almost instantly (provoked localized vestobulodynia) and got me started on a treatment plan right away-including taking me off my birth control, which was associated with vulvodynia. You DO have options. You just need to find a doctor who can show you what they are. Keep trying until you find that person.

    kalinikta77

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    Re: Help- just diagnosed

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