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» Anyone been to see Dr.Claire Bailey in Birmingham?
Yesterday at 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Yesterday at 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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: 4

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

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: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

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: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


gyno suggests nerve dr out of state

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gyno suggests nerve dr out of state

Post  AroraNightfire on Thu Jan 26, 2012 12:24 am

I live in massachussetts. Today I went to see my pain gyno as I do every 3months. She told me that she's given me the names of some drs in new hampshire that are the heads of pudendal neuralgia. She said I need to see them. I told her I spoke to their office and they don't accept mass insurance. I spoke to my insurance company and they said they wont cover me to see him because I could see other drs in mass. To see him I would pay 500 dollars just talk and botox would cost 1000 dollars a shot. So she told me I need to make an appeal to my insurance company. She wouls write a letter as well. I really don't want to get on the phone with my insurance company because I know its going to be a fucking battle on the phone. I have been seeing another dr in mass who did a nerve block on me which did nothing for me, she isn't qualified for vaginal botox. What the fuck do I do? Im 27 and Ive been suffering for 9yrs now....frozen gelpacks are the only thing that helps me right away for a few minutes. Lyrica and cymbalta are becoming increasingly expensive. Help me please.

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AroraNightfire

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Re: gyno suggests nerve dr out of state

Post  BpCookie on Thu Jan 26, 2012 5:47 pm

Hun, I understand your frustration with your ins. company. Mine are a bunch of jerks who dont want to cover anything. I was supposed to get pelvic therapy but my ins. wont cover it because my LSC isnt acute. So I guess I have to wait until it becomes acute. Ins. company's are ridiculous.

I use the ice packs also. Have you tried Amatryptiline ointment yet? It numbs the skin. Its not perfect cause it doesnt numb it enough but its better than nothing. You could also try A and D ointment, Emu ointment, Tea tree oil, vitamin E oil, olive oil and any other kind of oil that you can think of. Just make sure you read the ingredience first to make sure there is no alcohol, fragrance or paraphen (sp) in it.

Good luck to you.
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i hate creams

Post  AroraNightfire on Tue Jan 31, 2012 6:49 pm

I used a skin thinning steroid cream for 2 yrs because I had a chronic itch the dr said it was vulvar dystrofy. Sept 2010 I had to stop the cream because the symptoms mutated from itch to constant burning pain. Since then I don't feel comfortable using anything that will damage my skin. I also had a pelvis mri with nerve imaging that showed I have scar tissue on my vulvar fat tissue. I often wonder if that cream was the culprit.

Rubbing the area causes an uncomfortable after sensation. Its as if my skin is still being touched and then it feels really raw. The only thing that helps is cold water and frozen gelpacks. Its a constantly project everytime I pee....the water then the gelpack. Its annoying but necessary. I really hope this dr in NH can help me.

I called his office yesterday and they told me for pain he does a consultation over the phone. In 2 to 4 weeks he's going to call me. Im thinking I should get my gyno to send him my pelvic mri and I should send him all my recorded drs appointments.
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Re: gyno suggests nerve dr out of state

Post  BpCookie on Wed Feb 01, 2012 4:03 pm

My Dr. gave me that steroid thinning ointment also. I have to use it twice a day. It worries me because Im afraid that the skin will become too thin and then I will have the opposite problem. Im going to have my Gyno do another skin biopsy because I want to make sure that nothing else is going on down there.

Good luck to you and I hope that nerve Dr. can help. I went to one and he said that he couldnt do anything for me. uuuggghhhh
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courage

Post  AroraNightfire on Wed Feb 01, 2012 9:30 pm

Ladies we all suffer and often encounter drs who don't know how to help. One thing I know is we all must have faith persistence and courage. Never loose hope that someday someone will have the solution to your problem. If the dr is a good one they will find the solution.

I went to my anastheseologist today. She begged for me to try the dmso gel. She told I could even put it in the fridge if the cold will help. She says its not harmful. Im putting my faith in her. I asked her to change my cymbalta to vicodine. So now im just on lyrica and vicodine. I have no idea how the vicodine will effect me. I just need something stronger.
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