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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


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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