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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


Just Frustrated

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Just Frustrated

Post  Alana3 on Thu Oct 17, 2013 6:38 pm

I guess I'm frustrated because I feel that every single part of me that makes me a woman is damaged. When I was 16, I found a lump in my boob, and had to have a lumpectomy (luckily it wasn't cancer, but it was humiliating when people found out regardless). I still suffer to this day with cysts. Awful. And they hurt like hell. And I can't wear a bra because theyre huge and bras cause shoulder and back pain (also when I stopped wearing a bra as much, the cysts were 40% better so I don't know maybe its not such a bad thing?)

Then fast forward to when I had sex without thinking about it, all of a sudden, it just started to hurt. Hello vulvodynia! Luckily here, I was able to get a vestibulectomy and am able to be almost as good as new. But it took 7 or so years. And the hell to get to the vestibulectomy wasn't too much fun either.

Than, starting from the point when I got my period, I always had impossibly annoying, painful, and heavy periods. Turns out, I have endometriosis. The pain is excruciating. I hate having my period. In fact, I dread it. Every second of it. It is miserable. I have to be on birth control, and I can't use tampons due to the pain.

I just feel damaged like every part of me that defines me as a woman is fucked up somehow. Everyone keeps telling me not to get depressed, but I can't help it, I am. I'm just waiting for IC to happen or something else, one more way to feel even less like a person. I just want ONE day where I don't hurt, where people aren't like you complain all the time (I'm pretty sure if someone healthy had ONE of these problems for an hour they'd be pretty pissed too). I'm sick of living like this. I hurt, I'm tired and I just want to go to bed. Does anyone else ever feel like what the fuck did I do to deserve this? In my opinion, being a woman is terrible I hate it. Everything to do with it. I just want to feel like someone normal. Sorry, I needed to vent.

Alana3

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Re: Just Frustrated

Post  zarli on Fri Oct 18, 2013 9:27 am

I'm hearing you sweetie !!! I look at my friends and some days I feel like saying "What the fuck do you have to worry about " I know this is an unreasonable bad thought but gee I feel totally ripped off living with this shit thing. Some days I feel its OK to just say FUCK IT this is shit!!!!!!!!!! You have certainly had way too much bad stuff to deal with, my heart goes out to you, keep venting when you need to and allow your self to have the crap days. Although know you are not alone and I always like to believe there are better days ahead. Things never stay the same and just when you think they can't get any worse they can, and just when you think things cant get any BETTER they can.

zarli

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Re: Just Frustrated

Post  zarli on Fri Oct 18, 2013 9:38 am

Sorry about the swearing but its sometimes warranted...

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Re: Just Frustrated

Post  EviE°Bee on Wed Nov 13, 2013 8:27 am

Wowie. That's a lot of shit.

I feel the same way. Im sure many of us do, like you pointed out. Everyone has a breaking point. Whats going on with your body is plenty reason to feel like you were given a crap hand in life. Important thing is to not stay in that negative place.

I dread waking up in the morning because I honestly don't know what it's gonna feel like. I can't sleep sometimes because I don't know if I will ever be NORMAL again. There are days I want to stay in bed and not speak to anyone, most days I suck it up and deal because there isn't anything I can do, not yet anyway.

I can't remember who said it or which discussion I was reading on here but this person said "If I was normal once, I believe I can be normal again." (Not a direct quote but along those lines.)
It made me feel more positive.

I don't know why we were "chosen" to deal with the problems we face. I do not have someone to go with me when I face these stoned-faced Dr's, no one is here with me when im at a store, in pain, and...I look at all these women and I wonder if any of them feel the same pain I feel.
What helps is I know there's an army of people who are having the same problems and issues I have. Mentally, im not alone. You ladies are always in the back of my mind, fighting your own personal hells like me. We're all in the same trench.

Muah! Feel better.
Evie Bee




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Re: Just Frustrated

Post  Alana3 on Wed Nov 13, 2013 1:56 pm

Yeah yesterday I had some weird tearing pain, today, nothing! It's so weird. I think mine had to do with muscles tho cuz I hadn't had sex in awhile and it tightened up. I took a muscle relaxer and the pain went away. Its only on one side and clearly not an infection of any kind but god body suck it up I don't need second guessing every two minutes. ugh. But mostly, now, I feel pretty good.

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Re: Just Frustrated

Post  mary jane on Wed Nov 13, 2013 10:37 pm

@ alana that's great ! focus on those very good days and enjoy them !!!!
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Re: Just Frustrated

Post  Alana3 on Wed Nov 13, 2013 11:15 pm

Thank you!

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Re: Just Frustrated

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