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» Anyone have pain with urination?
Yesterday at 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

» Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT!
Wed Oct 10, 2018 2:01 pm by pussycat

» From a concerned husband
Wed Oct 10, 2018 1:46 pm by shope610

» Had this for 5 years, looking for people who understand
Wed Oct 10, 2018 1:55 am by Npage14

» 6 year sufferer but I’ve found some hope
Wed Oct 10, 2018 1:33 am by Npage14

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 2

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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