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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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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