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» VULVODYNIA AND SUICIDE
Yesterday at 11:20 pm by Faezeh

» a video for you guys
Yesterday at 2:53 am by lavrose

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Yesterday at 2:45 am by lavrose

» New and need some help
Fri Feb 23, 2018 1:12 pm by fairlight10

» Acupuncture gave me my life back!
Thu Feb 22, 2018 11:25 pm by Bx11

» Anyone from New Jersey
Thu Feb 22, 2018 10:47 pm by LindafromNJ

» vaginal cream
Thu Feb 22, 2018 10:46 pm by LindafromNJ

» Acupuncture advice please
Thu Feb 22, 2018 2:25 am by ryn207

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

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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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

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vaginal cream

Thu Feb 22, 2018 10:46 pm by LindafromNJ

I have been given ABC cream to start using for my condition. This is gabapentin, amitriptyline and baclofen cream. Has anyone tried this. Also has anyone used lidocaine. My doctor told me not to use it. It is so sore at the vaginal opening. Has anyone used it there. Please respond!!

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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 …

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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


My story and cure

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My story and cure

Post  Irish_Girl on Sun Feb 09, 2014 8:56 pm

Hi everyone, I really sympathise with everyone going through the various stages of Vulvodynia, believe me I know how you feel! I thought I'd share my story so that readers know there is hope and that finding a cure is possible, despite how hopeless the situation can seem. I'm going to try and be quite descriptive with my symptoms, as I found reading others descriptions when I realised I had the condition helped me diagnose my symptoms fully, and aid the cure process.

I'm from Dublin in Ireland and have been pain free for almost three years. I'm 26, and I first started seeing symptoms when I was 22, and the pain began as a result of what I thought was a yeast infection (I'm prone to getting them). The pain was sharp, throbbing and consistent in one specific area (just outside the entrance to the vagina, and I also experienced some internal pain as well), I had never been sexually active so the pain wasn't caused from anything like that, but there was also some external symptoms in the form of swelling (but no itchiness). The pain was unprovoked, though if pressure was applied to that particular area, it would also become more intense.

Long story short, I saw several GPs for about two months, and all prescribed me with the same topical creams and antibiotics one would use to treat a yeast or bacterial infection, and nothing worked. The pain remained the same day in, day out and I slowly sunk into depression and started to spend all say in bed, refusing to eat etc,, I was in a bad way. It's worth noting here that I've had Mild Cerebral Palsy, my whole life, though my physiotherapist couldn't find anything to tie up the two. My pelvic muscles are also in really good shape (so I'm told!), so doing this form of excersize didn't help me in any way either. I eventually went to a swiftcare health clinic when I couldn't take any more, and they found an ulcer which, despite careful self - examination and visiting quite a few GPs, we all seemed to miss! I was then referred to a Gyn who did a few tests, and as soon as I mentioned my symptoms, he told me about Vulvodynia.

Unfortunately, he doesn't practice anymore, but it can't tell you how much it helped that right from the get go, he was so supportive of me. I went under general anaesthetic twice so that he could take a closer look at things (I can only stretch so far when awake due to the CP), and he did a biopsy and not only removed the huge ulcer, but discovered that this had pretty much been blocking the entire entrance to the vagina, causing blockages of discharge etc.. I found it odd that I didn't notice the ulcer, but because of my narrowness and the fact that the ulcer was difficult to see, he said I never would have been able to myself. Anyway, you can imagine my happiness that there was a reason for my sharp, throbbing external pain, but even after the ulcer was gone (and it took about 6 weeks for the stitches to heal, which was very painful in itself), the internal pain remained.

I began to get depressed again, because it was the daily, internal pain that bothered me the most. In tears, I returned to my gyn and we decided that he should take a look internally as well. When I went under again, my gyn concluded that the entire area (internally and externally), was hyper-sensitive, thus causing the internal nerve pain. So he prescribed me a six month dose of Gabapentin - 350mg, 3 times a day. During this time, I did all the usual things like only wearing loose fitting clothes and cotton underwear, and avoiding perfumed products and I didn't even think about sex - I couldn't until the pain was resolved. What helped me was the reassurance of my gyn: "if this doesn't work," he said, "we'll keep going until we find something that does." So, girls if you're not happy with your gyn, try looking for another who'll offer more support. And after about 6 months on the tablets three times a day, the pain stopped as quickly as it had started and I haven't had to take a tablet since, and that was three years ago. I do think my pain was amplified due to the fact that I couldn't focus on anything else (and how are you meant to stop this because of where the pain is?!), but I knew I had to try, so I stopped reading about the pain etc and as I continued to take the tablets and felt the pain lesson, I decided to try and change my outlook and think positively about my pain: I was going to defeat this, it was not going to consume me anymore, the way it had for over 18 months. And I took more tablets and after two years, the pain was just not there anymore and I weened off the pills.

It was a long, painful and stressful journey, but I found my cure, despite all the hard work and tears in between. Even to this day, I'm conscious that the pain could rear it's ugly head at any time, so I always try and keep a prescription on standby in case I need to start a dose of them again. I'm not hugely sexually active by any means as a result of all this (I'm conscious that given my history, sexual activity will trigger the internal pain so I approach this side of things a little warily than I might have if this hadn't happened unfortunately), but when I did attempt it when the Vulvodynia pain subsided, it wasn't hugely uncomfortable at all (it was for other reasons, but this had nothing to do with my Vulvodynia pain), and now it's (thankfully) virtually pain free - yay! Sorry about the length, but I hope this will encourage others to keep looking for a solution and know that it is possible for the pain to subside and for your normal life to resume again. I wasn't prepared to give my life up to this pain, I was going to find a cure, and if it ever starts up again ( as I'm fully aware it might), I'll find one again.

Good luck everyone, I know it's tough, but keep trying to get through it xxxxxx

Irish_Girl

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Re: My story and cure

Post  mary jane on Sun Feb 09, 2014 9:56 pm

THANK YOU FOR POSTING THIS STORY. GOD BLESS YOU AND ALL THERE IS, I am also on 50 mg amitriptyline and it works for my nerve pain, I am positive if I add more meds I will be able to live a better life

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Re: My story and cure

Post  Irish_Girl on Sun Feb 09, 2014 11:00 pm

Thanks Mary Jane, I hope it works for you. It's very much trial and error when it comes to defeating Vulvodynia, and about finding a combination that works for you. The problem I had with this was the pain that your left in up to this point! I know just how awful it can be and reading stories that had positive outcomes helped me to stay sane and gave me hope during the worst of days. This forum is fantastic; having support like this is so vital. Before I found my gyn, I was very much coping with it alone, which was one of the toughest parts.

Irish_Girl

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my vulvodynia experience...

Post  Gemini23 on Tue Jun 10, 2014 6:20 am

hey so I am new here and very confused by this site! I don't think I even posted this correctly...sorry if I put it in the wrong spot! I'm not computer savy.... So I started developing vulvodynia as a teen in highschool and I'm now 25 yrs old. at first it was only one side of my vestibule that I experienced the burning pain in and it would come and go. Usually it only lasted a few hours and was mainly in the left side of my vestibule. It would also be accompanied by a thick yellow discharge that was nearly impossible to get out of my undies. these symptoms would come n go frequently and I never told anyone about them. then as highschool progressed so did my pain. now my whole vestibule hurt everyday and the pain free intervals just got shorter and shorter. the yellow discharge became an everyday thing too. I saw one obgyn after another & none of them knew what was wrong with my vagina. they tested me for yeast, b.v., and every std you can think of but nothing ever came back positive. (I started having sex after I developed the vestibulitis & yellow discharge btw) I also saw a primary care doc & even a chiropractor & a urologist. no one knew what was wrong with me though. finally an obgyn referred me to a specialist (vulvologist I believe..) who diagnosed me with provoked vulvodynia. I tried a lot of the antidepressants and also the topical lidocaine cream but none of that stuff worked. I also went through nearly a year of physical therapy, which helped but didn't cure me by any means. topical steroid cream that my doc gave me to help with the psoriasis I had around my vagina helps a lot for the vvs pain. I am over taking dangerous prescription pills to treat this so at this point I am looking to just heal my body the natural way. I am not sure what caused my vulvodynia but I think it started when I was 16 or 15. I never had trouble with yeast that I can recall, but I won't rule it out completely. Diet always plays a role in disease and disorder in the body. I think poor diet, severe chronic insomnia and severe chronic stress had a lot to do with the onset of this illness for me. I have also had fibromyalgia for quite some time now as well. I almost feel like my vulvodynia is just a symptom of my fibromyalgia. they both started at the same time I think. I believe this also all has to do with inflammation in the body. when I was on prednisone after I got my wisdom teeth removed, my vulvodynia and fibro were not as bad as usual, so it's clearly inflammation related just like the psoriasis patch around my vagina and other parts of me.

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Re: My story and cure

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