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    » What's next?
    Fri Apr 20, 2018 10:07 am by amyhp

    » HELP!! Topical cream?
    Mon Apr 16, 2018 5:49 pm by Sad

    » Please tell me this can get better
    Sun Apr 15, 2018 11:31 am by amf329

    » Pressure to have sex.
    Sun Apr 15, 2018 2:00 am by Sad

    » Vulvodynia and other neurological diseases?
    Sat Apr 14, 2018 8:00 pm by wuhujen

    » I'M NEW - Do I listen to my gyno who I feel has it wrong?
    Sat Apr 14, 2018 7:57 pm by wuhujen

    » I wanted to share a resource that has made a huge difference for me
    Wed Apr 11, 2018 9:28 pm by amf329

    » Loneliness
    Wed Apr 11, 2018 11:36 am by sophiarp

    » I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
    Fri Apr 06, 2018 4:06 am by Warrior2010

    I'M NEW - Do I listen to my gyno who I feel has it wrong?

    Fri Mar 09, 2018 6:17 pm by Tunes25

    Hello!

    I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

    To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

    Comments: 4

    I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

    Mon Mar 12, 2018 4:33 pm by totallycured

    Hi,

    Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

    Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

    Comments: 3

    Hi Im from Australia :)

    Sat Jan 08, 2011 1:08 am by emma

    Hi girls... I live in Australia.
    I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
    Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

    Comments: 35

    Somebody please help me...

    Fri Nov 24, 2017 8:05 am by Andlag

    Hey everyone,

    since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

    Comments: 14

    Lidocaine with condoms?

    Wed Mar 21, 2018 10:44 pm by AEM1

    Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
    Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

    Comments: 1

    Constant pain, I want to die.

    Fri Jun 02, 2017 4:29 am by Meggiemay

    I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

    For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

    Comments: 23

    Recently Diagnosed which has motivated my research study

    Tue Mar 06, 2018 4:54 pm by ebclose2free

    Hi everyone,

    My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

    Comments: 0

    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: 3

    New and desperate for advice

    Sat Mar 03, 2018 2:37 pm by srbry

    Hi everyone,

    I'm new here and was told to find a support group because this is all getting a bit much really...

    I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

    Comments: 3


    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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