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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 …

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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 …

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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 …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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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