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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: 3

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

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: 3

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0


Fuck this disorder.

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Fuck this disorder.

Post  meelie on Sat Aug 29, 2015 2:25 am

Fuck this disorder. Death would be better.

meelie

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Re: Fuck this disorder.

Post  Ouch123 on Sun Aug 30, 2015 12:44 am

I get it!!! I have actually had the thought !

If i cant have a relationship and i have to live with chronic burning oain in the most intimate possible area... Whats the effing point!

No worries.... Im not truly on the edge... But WTF

Ouch123

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Re: Fuck this disorder.

Post  meelie on Sun Aug 30, 2015 2:53 pm

I just missed my 50th, yes 50th highschool reunion last night because of this damn burning. I will never ever see these people again. I'm not young as you can see. I guess that is a plus, it means I won't have to live like this for as long as some of you poor girls. I've had mine for 3 years status post pelvic fracture/trauma. I just get sick thinking that my last days on this earth are going to be so miserable. I've done PT, I'm doing yoga and Amy Steins exercises. Still there. Has ruins my relationship with my husband of 48 years. Oh, he's not leaving me, too many years under the bridge, but we are not close anymore, it's like he is afraid to be close to me physically and emotionally. That really sucks. I feel so so freaking alone. You girls are the only ones who can understand. It's just too embarrasing to talk about to people.

meelie

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Re: Fuck this disorder.

Post  WaahwaahUK on Sun Aug 30, 2015 3:48 pm

Sometimes I read posts and don't know what to say so I say nothing. But I know how lonely this pain makes people feel, so just wanted to say I hear you.

WaahwaahUK

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Re: Fuck this disorder.

Post  meelie on Sun Aug 30, 2015 3:58 pm

Thanks. I guess I just the end of rope with patience. Thanks for listening.

meelie

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Re: Fuck this disorder.

Post  Ouch123 on Mon Aug 31, 2015 1:06 am

I have been thinking a lot today about the ladies on this forum. How can this be a real thing!!!!!!

I am new to the vulvodynia diagnosis, so am still working through my anger, denial, depression etc. I keep thinking about the diagnosis. At first I was so happy to have a diagnosis, I thought "now I have something to treat". All vulvodynia is is a word for "it hurts and no one can figure out why". I knew that before I got the label.

I have a very new relationship with someone I feel I could really make it work with. It wont go anywhere. We just cant really develop any real intimacy. I have been alone for years and was sooooo hopeful.


Ouch123

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Re: Fuck this disorder.

Post  meelie on Mon Aug 31, 2015 2:07 pm

I know what you are feeling. All our intimacy is gone. No one can understand. I took two tramadol yesterday and it helped but I will run out of my dogs pain meds soon and then am I going to do? I only take them when it gets so bad I want to die.

meelie

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Re: Fuck this disorder.

Post  sgw11 on Tue Sep 01, 2015 12:20 pm

As a 22 year old woman who is meant to be young and free and enjoying exploring her sexuality. FUCK. THIS. DISORDER.

sgw11

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Re: Fuck this disorder.

Post  meelie on Tue Sep 01, 2015 12:36 pm

I still say if it was acid on a man's penis someone would have done something about this before now. We need someone in congress to fight for research. We need to be squeaky wheel and start making noise. That is the only way anyone gets anywhere in this country. Look at all the stuff different "groups" have gotten in this country. It wasn't by being quiet and saying whoa is me. They are loud and they are unrelenting. That is what we need to be heard. Wish I knew how to get it started. It's just that this thing is so dam embarrasing. I'm going to see my interness this morning and I DREAD this conversation because i know I am going to break down and cry like I always do and he's going to think I'm an idiot.

meelie

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Re: Fuck this disorder.

Post  BpCookie on Mon Sep 14, 2015 3:23 pm

Hello Ladies, I totally understand!!! I was so depressed at first because all those pills, ointments, creams, lotions, procedures.....didn't work. Then the anger came. I wanted to blame the entire world. Then I turned that anger into determination. I did research so that I would know what I was talking about when I talked to Dr.s. I finally found a great Dr. who really improved my pain issues but I still needed more help. Then this wonderful Dr. retires. I was devastated!!! But he gave me a referral to see another Dr. and I can already tell that he is totally lost when it comes to this. He isn't anything like my other Dr. who's techniques were way far advanced. I have a terrible feeling that this guy is going to throw more gels, creams, lotions, ointments........at me. I feel like I'm starting all over again.
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BpCookie

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Re: Fuck this disorder.

Post  kell on Fri May 13, 2016 6:14 pm

Hi, I just joined and I could not agree more - Fuck This Disorder. No

Why me, is all I think. And yet I'm sure my husband thinks its just because "I don't want to." Couldn't be further from the truth.

kell

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Fuck This Disorder

Post  let's kick this on Tue May 24, 2016 12:14 am

I totally agree why can't these doctors help us FUCK No No

let's kick this

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Re: Fuck this disorder.

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