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    Do you ever worry that you're making it up?

    Fri May 27, 2016 6:50 am by Lucci

    Hello,

    I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

    A few years into treatment, I had the diagnosis of PTSD added on for …

    Comments: 7

    Clitoris Issues

    Tue Apr 28, 2015 8:17 pm by January

    I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

    Comments: 2

    Cured of Vulvodynia

    Wed Aug 17, 2016 1:39 am by angelique2016

    I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

    Comments: 10

    Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

    Sun Jul 30, 2017 1:03 am by Carolyn4

    Hi everyone,

    I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

    Comments: 1

    Partial Vestibulectomy

    Mon Jul 31, 2017 6:44 pm by JGD13

    Hi all i am new here.
    I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
    After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

    Comments: 6

    Post Vestibulectomy

    Thu Aug 03, 2017 6:15 pm by infinitelywondering

    Heya,

    I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

    However, today I came home and have done the following things:

    -washed with warm water
    -applied manuka honey to the area
    -ensured I wash at least 3 times a day and dab the area dry gently
    -use frozen peas to stop the swelling

    As of now I am …

    Comments: 1

    New w/ Secondary Provoked Vestibuldynia

    Wed Apr 26, 2017 11:46 pm by Birdy

    Hi everyone,

    I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

    Comments: 3

    Anyone from the PNW?

    Sat Aug 05, 2017 7:54 am by jungleclover

    I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

    Comments: 0

    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: 22


    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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