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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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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 …

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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

Comments: 6

Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

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: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2


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

jen007

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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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