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» Acupuncture advice please
Yesterday at 11:27 pm by infinitelywondering

» 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

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

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

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


new member new flare and in pain

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new member new flare and in pain

Post  riag on Mon Jan 07, 2013 10:23 pm

Hi I live on Long Island Ny. I have vulvodynia/vestibulitis for 7 yrs now. I was origninally diagnosed by a urologist because after going from dr to dr to dr , i was told I had interstitial cystitis. I was in so much pain i couldnt even stand up straight and was like that for almost 8 weeks. Anyway this urologist i went to see about the ic told my I had vulvodynia due to severe pelvic floor spasms/dysfunction. He put me on a regimen of nortriptyline and valium. Also was sent to physical therapy. AFter many weeks and months, i was finally back to normal. I was even enjoying a normal sex life with my husband. He recommended i follow up with a gyn in my area. He has been able to keep it relatively under control. I have a mini flare every time i get my period and then it goes away. from time to time i would get flares, he would put me back on the valium for the spasms. as long as i kept the pelvic spasms under control, my vulvodynia would go away. Well now Its backwith a vengeance and i dont know why. It started in sept. the gyn changed my med to neurontin which was absolutely horrible for me. it gave me headaches and made me so numb i couldnt feel anything. pain or pleasure.even the inside of my mouth was numb. he switched me back to my old regimen and back to physical therapy. I had some relief for 3 weeks in november. now iam flaring again horribly. I have no pelvic pain or spasms so I dont know what to attribute this flare to. I am so raw and red and the pain is driving me insane. nothing is helping. i dont think he knows what else to do with me. so I went back to that original urologist I saw 7 yrs ago for advice. He kept me on nortriptyline but also gave me some topicals to use. luvema twice a week, traumeel compound twice aday and lidocaine/msm/silverbiotics as needed. Im putting so much stuff up there its crazy! and yet nothing is helping. i am getting so unbelievably depressed. i dont want to live like this anymore. i also suffer from fibormyalgia for 14 yrs and ibs for 10 yrs. does anyone know a good gyn who deals with this condition on long island?

riag

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Re: new member new flare and in pain

Post  jen007 on Wed Jan 09, 2013 1:19 am

Hi riag,

I had been seeing an excellent doctor in New York for a short period of time. I had only been seeing him for surgery options, which I had gone through with this past summer. Anyway his name is Dr. Andrew Goldstein. He is based in Washington D.C I believe, but he has an office he visits weekly in New York. There are mixed reviews about him online, but I will tell you my honest opinion on him. He is very nervey and ballsy, very full of himself. BUT everything he's had me do works. He might be all of those things, but he is a miracle worker and a life changer. I'm not sure how far you are willing to go with treatments, but if you ever decide to get surgery he is the one you want to do it. He's done over 500 and is one of the best. He does consultations and will tell you exactly what type of vulvodynia you have and help you figure the cause of it all. I decided on my own to get a full vestibulectomy and it was the best thing I ever did. I'm not 100%, but I'd say I'm pretty close...like 95%.

Even if you don't want to get surgery he will help you. If you need more information about him you can google his name and it will take you to his web site. He really is worth checking out!

-Jen

jen007

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Re: new member new flare and in pain

Post  riag on Wed Jan 09, 2013 2:17 am

I have heard of Dr Goldstein. I am considering seeing him. However he doesnt take my insurance and it is going to be extremely expensive for me. I don't know if I can afford it. I was also extremely concerned about the mixed reviews on him online. Thank you for your advice though. I was going to use his office as a last resort. I would really love to find another gyn that works with this condition that hopefully takes my insurance.

riag

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Re: new member new flare and in pain

Post  jen007 on Wed Jan 09, 2013 2:44 pm

Yeah he didn't accept my insurance while I was seeing him. It was pretty expensive, but in my case worth every penny. I'm trying to appeal my surgery because he was the only person in my area that could do the surgery.

I hope you find a good doctor !

-Jen

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Re: new member new flare and in pain

Post  Alana3 on Wed Jan 09, 2013 6:44 pm

Jen! I didn't know you went to Dr. Goldstein! He's supposed to be good I was actually referred to him too, but I def couldn't make it up to New York/DC especially out of network. My doc here was out of network and I too just had the surgery, but in my opinion (I dont even know if the surgery worked or not) going to a doc who knows his shit and is out of network versus a doc who is in network and doesn't know what to do is worth every penny. Trust me! I LOVE my doc here, he is pricey but he makes me feel like I'm not alone. Riag, GO to Goldstein he is supposed to be amazing, my Physical Therapist told me to go to him, but after she found out who I was going to, she said mine was the real deal too! I live in Florida so that was a haul! I was all set to go to him too I was at my wits end as well.

Alana3

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Re: new member new flare and in pain

Post  riag on Thu Jan 10, 2013 2:33 am

I received a list of gyns form the nva. There is a Dr Mark spitzer in lake success ny on the list and supposedly he has a lot of experience with vulvodynia. Has anyone had any success with him?

riag

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Re: new member new flare and in pain

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