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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 …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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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: 4

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


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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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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