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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, …

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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 …

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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 …

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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


Help me please!

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Help me please!

Post  fleener on Fri Sep 20, 2013 8:06 pm

Hello:
After I found out I had an estrogen/progesterone fed Breast Cancer tumor last october - I was taken off my hormones. I was put on hormones to help this condition about 15 years ago when I had the same problem. Any way after being taken off H ...about a month later I started to get a pain along my left vaginal wall starting from the opening and going up 2 inches on that wall. I was in so much pain after sex I ended up as an emergency case at my GYN's. He put me on a regimen of estrace cream and gabopentin ointment - anti- anxiety meds and Oxycodeine. This regimen only helped a little bit. I also had some burning after urination. Is this kind of pain really considered Vulvadynia? I find it painful to sit and won't go near having sex.

Then I decided to go see a Female Doctor Dr. Zolnoun at UNC vulver/vaginal pain clinic in NC. She changed up my medication to an anti - seizure medication and muscle relaxers. When I went to see her I was sitting on ice... 2 - months later I flew back home to Alaska not having to sit on ice. (I have a sister there in NC I could stay with to keep costs down). The Doctor also gave me a pessary to insert vaginally each evening - she thought I had a muscular problem pinching on a nerve - (while at my sister's I used it and never bled from it, but when I got back to Alaska after using the pessary I would find blood in my panties. So I stopped using it. I also am having a total relapse of the pain, sometimes burning after urination. (i have tried not eating high oxalate or acidic foods). Two nerve blocks here from a pain doctor has not helped.  My Physical Therapist has told me she doesn't know what else to do with me.  I try massage and acupuncture and they only seem to help for one day. I am starting to feel I'm at the end of my rope. I'm trying to follow up with the Doc in NC - but I'm not sure what else she can or can't do for me. Help please...
Eli

fleener

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Help me please

Post  meelie on Sat Sep 21, 2013 7:56 pm

He hon, you should join the Vulvodynia Society and find a PT that specializes in vulvodynia. Just any PT is not trained in what to do or what it really is. I have found one here in Ga and praise God I think she helping me. I have been to 4 apts and she did internal "massage" last week and it actually eased the burning for a few days. I have great hope at the moment. I finally figured out that it must be due to a pelvic fracture that I experienced on 4/30/2011 and I have been sitting on my right 'cheek' since then to avoid pain and it tightened and knotted up my pelvic floor muscles something awful. I pray you and all the others will find someone to help you and that my PT will be able to get my pelvic floor back to normal soon and that it stays that way. God bless.Smile 

meelie

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Help me please!

Post  fleener on Sat Sep 21, 2013 9:54 pm

Thank you Meelie for your reply. I will see if there are any Vulvadynia PT's n Alaska...which I doubt. OR I may look for one where my sister lives (in Concord, NC).

fleener

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Re: Help me please!

Post  zarli on Mon Sep 23, 2013 11:07 am

keep trying everything you can, you will find something that helps you. Please know you are not alone and when you are feeling bad think of all of us here on this forum, that's what I do. Every one is different and it can take time to find the thing that will help you, keep positive nothing stays the same.

zarli

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Help Me please!

Post  fleener on Mon Sep 23, 2013 6:49 pm

I am trying to do everything.... -a GYN I went to in North Carolina suggested Gabopenton. Taking it by mouth - so we'll see. The bummer is - I see my friends and sisters are working at great jobs and it is snowing in Alaska - so I am very depressed about my situation. I was a TV Producer - but because of my health - not sure I'm capable of doing that career anymore....just feeling very bummed out. Guess I need to find something that will make me happy.

Thank you for your response!

fleener

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Help me please

Post  meelie on Tue Sep 24, 2013 12:43 am

I was taking Neurontin like your gyn gave you but because mine is due to pelvic floor dysfunction the burning usually went away at night when I was sleeping, laying down without any pressure on my pelvic floor. I finally realized that even with the medicine nothing really changed because even with the Neurontin the burning would start again after being up for a little while the next morning.
I only took it at night and then when I started taking it morning and night it started messing with my brain and making me feel weird like spacey or something. So I quit taking it and nothing changed. Burning went away at night and returned the next morning.
So I guess I was taking it for nothing. But, I do hope it helps you. And don't give up. My PT says she had someone come from way over from the coast of Ga that was taking it and it helped her until she had a flare up and that sent her to Laurie.
I surely pray that you can find a PT to help you. Did you join the Vulvodynia Society? I haven't renewed my membership since I have found hope but if I can get on the site I will see if there are an PTs in Alaska.

meelie

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Help me please

Post  meelie on Tue Sep 24, 2013 12:55 am

Oh crap, I just logged on and it says it will send on request medical professionals for your area. I have already got my list for the Georgia area so it looks like you will have to join unless there is someone else on the post that might be from Alaska. When you join you have to tell them where you live. Anybody out there that might be from Alaska or know someone who is a member that lives there?

meelie

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Help me please!

Post  fleener on Tue Sep 24, 2013 3:26 am

I haven't started the Neurontin yet...so we will see. I do have a PT here. She comes highly rated by a friend who use to have Lavater Syndrome. PT use to actually go inside my V and press on the muscle she thought was spasming out. The first time she did that I felt relieved of pain the next morning. But the next two times it felt more like she was aggravating the problem. So we just do trigger point therapy and gentler exercises at home - she is also looking at getting me a biofeedback machine to use at home. Thank you so much for all of the input!

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Re: Help me please!

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