Log in

I forgot my password

Latest topics
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: 7

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 …

Comments: 0

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

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: 6


Just got diagnosed after living with VVS for about 3 years (I'm now 20)

View previous topic View next topic Go down

Just got diagnosed after living with VVS for about 3 years (I'm now 20)

Post  joyj0yjoy on Fri Jul 31, 2015 7:35 am

My name is Joy. The pain started roughly 3 years ago (no trigger to speak of, the only thing I can think might have helped start it is leaving in a tampon too long), and I kinda just tried to ignore it because my family doesn't have health insurance and my mom thinks doctors are the devil (yeah, she's crazy). I just stopped using tampons and tried to forget about it/hope it would go away on it's own. I wasn't what you'd call sexually active, so it was kinda easy to push it to the back of my mind. Today, I'm still a virgin (saving it for my husband) but I have since indulged in certain pleasures, or at least, tried to. My VVS made it impossible to allow any insertion due to the pain, (I would just cut my boyfriend off, tell him I wasn't comfortable with it, etc). I recently (by recent I mean like April of this year) became fed up, (what's a girl gotta do to insert a goddamn tampon without pain?!) and saved up for a gyno appointment. Ended up seeing a nurse practitioner because the gyno injured herself or something. This bitch looked up in me, poked and prodded, watched me writhe in pain, and then looked me in the face and said, "There's nothing wrong with you, your vagina just isn't ready for insertion. I'm sure this will go away once you start having intercourse."
I went back out to my car and broke down sobbing (I'm not a cryer). I felt so helpless. "What's wrong with me??" "Do I have to live with this?" "Is it so much to ask to enjoy foreplay as a virgin?!" It was awful. And I obviously told no one about it because it'd be embarrassing as hell - "Yeah, my vagina hurts upon insertion and I waited years to get it checked, and guess what, it's actually all in my head" NOPE. So I booked an appointment elsewhere ("Fuck that bitch, she's wrong, I need help" I thought). $277 later, (will probably be billed for more due to the diagnosis) I see an (ACTUAL!!) gyno this time, but she starts saying the same shit as the other lady, like, "Try spreading your legs really wide when inserting a tampon" and "maybe use lube" and "try stretching it out with a vibrator". Thankfully, she felt around enough to actually feel the inflammation and was like, "If you wait for Dr. Such-n-Such to get out of his C-section, he can probably give you better answers" so I was like, "Of course I'll fucking wait if it'll get me closer to some answers" so I wait and he comes and checks me out for like 60 seconds and says, "Describe the pain" and I say "Burning" and he said "Yup, I know this." and he sits me up and explains I have VVS, how they don't know what causes it, and there isn't a cure, but some treatments can help, though are a little spotty, and worst case scenario is having surgery. I was so RELIEVED to have an answer, a name, the makings of a solution. Not knowing, and feeling like you're crazy, is the worst part.
He prescribed a low oxalate diet, synalar (ointment) on area twice a day for 2 weeks, once a day for 2 more weeks, every other day on the 5th week and twice during the 6th week, plus citracal 2-3 pills daily for the same amount of weeks, then a follow-up appointment 8 weeks from now. I'm currently waiting on my pharmacy to get my drugs in, they say they'll be ready tomorrow. So that's when I'll start them. I am hopeful. The biggest worry is money. (It's over $150 for these drugs!!) I work 2 part-time jobs, one $10 an hour (about 20 hours a week) and the other $8.25 an hour (about 20 hours also). My health is important to me, GETTING BETTER is important to me! It's worth whatever it takes, but I don't want to go into debt over this, and health insurance seems like such a crazy expense for a plan that may not cover my pre-existing issue.
Thank you for reading, it feels good to lay it all out like that. I will probably tell my bestfriend and roomates, now that I know I'm not crazy. If you have any information/advice about the drugs I'll be starting or the diet or about the insurance situation, please share!
So glad I found this forum I love you

joyj0yjoy

Posts : 1
Join date : 2015-07-31

View user profile

Back to top Go down

Re: Just got diagnosed after living with VVS for about 3 years (I'm now 20)

Post  Cami90 on Wed Aug 26, 2015 8:03 am

Hi Joy,
I know how you feel. I went through this for a couple of years, went to a lot of doctors (even in another state), tried a bunch of medications and spent a lot of money. The only thing that really cured me was surgery followed by physical therapy. But of course different things work for different people so you have to try everything else first.
As for the insurance, I had the same problem. All insurance companies I applied for would´t cover pre-existing conditions. So I found this government insurance called PCIP (Pre-existing Condition Insurance Plan). It was basically an insurance plan that covered anything. But I believe this was only available until 2014 due to the healthcare reform. The good thing is that now if you can get insurance through an employer they cannot leave out pre-existing conditions. The shitty part is that private insurance plans don't have to follow the same rule. But anyway, if you can get it through your job or maybe your parents' job then you would have that covered. It is expensive but totally worth it if you end up having surgery.
Well, I hope you find what works for you!



joyj0yjoy wrote:My name is Joy. The pain started roughly 3 years ago (no trigger to speak of, the only thing I can think might have helped start it is leaving in a tampon too long), and I kinda just tried to ignore it because my family doesn't have health insurance and my mom thinks doctors are the devil (yeah, she's crazy). I just stopped using tampons and tried to forget about it/hope it would go away on it's own. I wasn't what you'd call sexually active, so it was kinda easy to push it to the back of my mind. Today, I'm still a virgin (saving it for my husband) but I have since indulged in certain pleasures, or at least, tried to. My VVS made it impossible to allow any insertion due to the pain, (I would just cut my boyfriend off, tell him I wasn't comfortable with it, etc). I recently (by recent I mean like April of this year) became fed up, (what's a girl gotta do to insert a goddamn tampon without pain?!) and saved up for a gyno appointment. Ended up seeing a nurse practitioner because the gyno injured herself or something. This bitch looked up in me, poked and prodded, watched me writhe in pain, and then looked me in the face and said, "There's nothing wrong with you, your vagina just isn't ready for insertion. I'm sure this will go away once you start having intercourse."
I went back out to my car and broke down sobbing (I'm not a cryer). I felt so helpless. "What's wrong with me??" "Do I have to live with this?" "Is it so much to ask to enjoy foreplay as a virgin?!" It was awful. And I obviously told no one about it because it'd be embarrassing as hell - "Yeah, my vagina hurts upon insertion and I waited years to get it checked, and guess what, it's actually all in my head" NOPE. So I booked an appointment elsewhere ("Fuck that bitch, she's wrong, I need help" I thought). $277 later, (will probably be billed for more due to the diagnosis) I see an (ACTUAL!!) gyno this time, but she starts saying the same shit as the other lady, like, "Try spreading your legs really wide when inserting a tampon" and "maybe use lube" and "try stretching it out with a vibrator". Thankfully, she felt around enough to actually feel the inflammation and was like, "If you wait for Dr. Such-n-Such to get out of his C-section, he can probably give you better answers" so I was like, "Of course I'll fucking wait if it'll get me closer to some answers" so I wait and he comes and checks me out for like 60 seconds and says, "Describe the pain" and I say "Burning" and he said "Yup, I know this." and he sits me up and explains I have VVS, how they don't know what causes it, and there isn't a cure, but some treatments can help, though are a little spotty, and worst case scenario is having surgery. I was so RELIEVED to have an answer, a name, the makings of a solution. Not knowing, and feeling like you're crazy, is the worst part.
He prescribed a low oxalate diet, synalar (ointment) on area twice a day for 2 weeks, once a day for 2 more weeks, every other day on the 5th week and twice during the 6th week, plus citracal 2-3 pills daily for the same amount of weeks, then a follow-up appointment 8 weeks from now. I'm currently waiting on my pharmacy to get my drugs in, they say they'll be ready tomorrow. So that's when I'll start them. I am hopeful. The biggest worry is money. (It's over $150 for these drugs!!) I work 2 part-time jobs, one $10 an hour (about 20 hours a week) and the other $8.25 an hour (about 20 hours also). My health is important to me, GETTING BETTER is important to me! It's worth whatever it takes, but I don't want to go into debt over this, and health insurance seems like such a crazy expense for a plan that may not cover my pre-existing issue.
Thank you for reading, it feels good to lay it all out like that. I will probably tell my bestfriend and roomates, now that I know I'm not crazy. If you have any information/advice about the drugs I'll be starting or the diet or about the insurance situation, please share!
So glad I found this forum I love you

Cami90

Posts : 10
Join date : 2012-10-30

View user profile

Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum