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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 a depressing rant

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Just a depressing rant

Post  lolainslacks on Tue Sep 27, 2011 12:22 pm

I'm feeling so bad about this lately. I already have real problems with anxiety that I've had to deal with for years, and now that this disorder is a part of my life it seems to be the epicenter of my anxiety.

The pain medication I've been taking since July has not helped at all. I know it's just the first one and there are others for me to try, but I pinned a lot of hope on this and it's a huge disappointment.

It's just, these dilators, they work sometimes. If I use lidocaine I can get all the way up to the largest, which is average penis size, so sex is definately possible now. But I have to take my time each session, and I can't use the largest for about forty minutes. Over half an hour of foreplay every single time I have sex in the future. And after I use them, the pain lasts a day, so I won't be able to have sex two days in a row. And some days are worse than others so some days the lidocaine doesn't help me, which means that some days sex just won't be possible. And the week of my period, from the second it starts to about four days after it's ended, any penetration is impossible. Which means that really, sex will hardly ever be possible, and when it is, it will never be spontaneous or romantic. Instead it will be long and slow and clinical.

And I'll never be able to have casual sex with a guy I don't know that well, or with someone I just meet and want to sleep with. I know that this kind of sex is frowned upon, or is thought of as 'slutty', but other women have this option, and I don't. It's something I want to at least be able to do. It's my choice who I sleep with. But I can't even consider it, because guys who want casual sex won't be willing to wait half an hour with me, and I can't very well carry a lidocaine syringe everywhere I go.

Right now I am just in a state of rage and depression and resentment. And every fucking movie I try to watch to take my mind off things has a sex scene that makes me feel like shit. I feel hopeless, I can't imagine ever finding any man who will be okay with my situation.

lolainslacks

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Re: Just a depressing rant

Post  Sarah001 on Tue Sep 27, 2011 4:38 pm

I feel exactly the same right now, I got asked out a couple of weeks ago by a guy I've known for a while and I said no because I can't have sex at this point ever so it just wasn't worth getting into it. I also live in an area where I couldn't gaurantee if I told one person other than my closest friends it wouldn't become common knowledge and I don't want strangers knowing about my vulvar! I too think it must be fantastic for these women to be able to have spontaneous sex with whoever they choose and feel cheated I can't, and I just don't want to even go there with any man so I'm feeling like I'm resigned to be alone forever. I really know how you feel as the meds aren't working well for me either, I've just had my Lyrica increased to 450mg a day on top of 50mg of Ami and I too thought medication would be my last resort so I'm really worried and disappointed it isn't working. I didn't get on with the lidocaine and mine is generalised V anyway but I did see plenty of women on other sites saying it lost effectiveness over time as the body becomes used to it, much the way the meds do. I'm pinning alot of hope on physio and I'm very worried it won't work because if it doesn't there's no other option for me. I honestly don't know what I'll do if it doesn't help, the thought of it frightens me. So I totally understand and empathise with you, I can't make you feel any better but I can show you you're not on your own with this. x
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Re: Just a depressing rant

Post  lolainslacks on Tue Sep 27, 2011 6:26 pm

Thank you so much. It really is a great comfort to be able to talk to someone who knows what this is like.

I have my very first physio appointment on the 12 of October, and I'm so scared about it because, like you, I consider this a last resort. I am sure it will help with my muscle control, but really, I can't see how it's going to be anything other than unbearable, because any physical examination is excruciating for me. There are just some days where I feel like there's no point getting out of bed because this makes me feel so depressed. Thank you for empathising. x x x

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Re: Just a depressing rant

Post  Mette on Tue Sep 27, 2011 10:38 pm

I just want to tell you both that I've been where you are. I know that hopeless feeling you get when the treatments aren't working. I was told several times that I had an incurable condition. But since they told me that new treatments have been developed and I keep hearing about new things. Right now I'm on ami and it made me able to continue my life. The first couple of doctors I saw didn't know that was even a possibility.

About sex I just want to tell you not to give up hope. Just because you are not able to use the dilator does not mean that you won't be able to have sex with a man with the same size penis. If you're turned on it's a totally different thing. Your vagina opens up and gets ready naturally. I'm not able to have a gyno exam without screaming and crying, but I'm able to really enjoy sex with my boyfriend. It hurts a little, but it's still really nice.

What I'm trying to say is: don't give up hope. You never know if life is going to change until it does.

Mette

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Re: Just a depressing rant

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