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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 it go away?

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Does it go away?

Post  cam4221 on Fri Apr 28, 2017 12:16 am

I started having problems in May 2016 and it took seeing 5 doctors to finally get diagnosed after 6 months of pain. I've been taking ami @ 75mg and also taking gabapentin 600 mg multiple times a day. It seems that there are times that this condition just disappears and then comes back at random times. Does anybody go through that? Also does anybody else get infections more often than they did before this condition came on? Also does anybody feel like when they are ovulating that it's extra gunky down there? I'm not sure if maybe I notice my ovulation more because of this condition and it may be the normal amount but I just am unsure on how everyone feels and sometimes it's hard to describe to a doctor when they don't have that condition and it seems that not many doctors know about this condition....

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Re: Does it go away?

Post  SinclairSassy on Mon May 22, 2017 1:55 pm

Hey there!

When I am on my period, I feel completely fine. I can wear jeans, underwear, you name it. But once I am off my period, my symptoms come back at random times. I might have a few days where I don't feel much pain (of course, I take my gabapentin every day, regardless of pain), then bang, I'm back to sitting on an ice pack. Recently, the pain has been gone during the day and around 9:30pm it returns. Just in time to guarantee a sleepless night. My IC is like this, too. I am fine during the day, but once it is about time to go to bed, I start feeling pain. My IC is not affected by diet. About every other year I get a huge flare that lasts a month or two. Sorry, I am rambling. Cool

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Re: Does it go away?

Post  mary jane on Mon May 22, 2017 2:12 pm

yes, it will and the more you believe it the better these chances are.
It can go away forever or come back again after some years but it is still very possible to achieve at least a remission. Don't let anyone tell you it's for life because people are different and don't forget there is also something called spontaneous remission.

Some years ago, I had a very bad nocturnal panic attack and the ambulance was called because I was hysterical and telling everyone I'm dying Shocked l, in an effort to calm me down, one of the ambulance ladies told me she once had cystitis for 6 full months ! and that one day it disappeared the same way it appeared for her...for no obvious reason. So there you go!

Try and read positive stories and maybe buy some positive books on remissions from illness, it helps a lot to stay positive
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Re: Does it go away?

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