new member new flare and in pain

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?

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

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.

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

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.

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?