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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: 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


does this sound like vulvodynia? please read!

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does this sound like vulvodynia? please read!

Post  LegendOfAspen on Mon May 16, 2016 9:28 am

hello everyone, i have known this forum for a while, and all you ladies seem super nice and not judgmental, which is why i have come here. i will try to keep this as short as possible, but i have no access to a gyno as of right now, and my anxiety is killing me because of this, so if anyone can help, that is greatly appreciated. i have had these symptoms for over almost a year now, although the pain has gone down significantly. it started right after a birth control pill i started when i was 18 in may of 2015. i had this intense burning down there as well as dryness. long story short, i was misdiagnosed twice and my gyno didn't help at all. i stopped the birth control by myself and immediately felt improvement, however, it has never fully gone away. i recently had sex with my boyfriend, which was painfree 98% of the time actually. my current symptoms are: slight irritation on the vulva, dryness, pasty white discharge, an odd smell (not that bad really, not like fish), and burning with urination. i can touch my vulva and apply pressure with no pain, but i don't get wet like a normal 19 year old would. i don't wanna be in discomfort for the rest of my life and i'm up at 5:30am having an anxiety attack about this. does this sound like vulvodynia or something else? i just have the irritation and slight burning so i automatically thought of vulvodynia since i was told no other vaginal infection causes burning. any feedback is SO appreciated, thank you lovelies.

LegendOfAspen

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Re: does this sound like vulvodynia? please read!

Post  emalita on Mon May 16, 2016 2:22 pm

Hi!

I'm sorry to hear you're in pain and that you don't have access to the care you need.

Vulvodynia isn't a single disease/condition for everyone. Vulvodynia is a diagnosis based off of elimination of other conditions (e.g. yeast, BV, STDs, etc.), and when a doctor cannot find a cause for the pain, they may diagnose vulvodynia, which is simply chronic vulvar pain without a known cause. Basically they are telling you that you're in pain, but they don't know why.

Personally for me, all of my tests came back normal until I went to a vulvovaginal specialist who developed his own testing method using a higher powered microscope (he has published studies acknowledging these new tests). He diagnosed me with a very bad case of inflammatory vaginitis (IV not DIV). He was the first vulvar specialist who didn't just assume all unexplained vulvar pain was nerve related, which is the answer I've gotten from two other specialists who I wanted to slap. And he didn't tell me all my pain was caused by unresolved sexual issues either (I hate doctors sometimes). Don't get me wrong, there are women whose pain is caused by overactive/damaged nerves or mental trauma from sexual abuse, but that's not my case.

Trust me, there are plenty of vaginal conditions that cause burning besides the typical yeast, BV, and STD. I know this isn't what you want to hear, but you should really be seen by a vulvovaginal specialist who is used to seeing nonstandard disorders. That is the only way you will find any peace from your anxiety...trust me, I've been there.

Hang in there. You can get to the bottom of this Smile

emalita

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