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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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Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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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 …

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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

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 …

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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


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...

zarli

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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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