20 years old with vulvodynia... my story

Hi everyone,

I can't believe I found a place where I can talk about my condition and actually have people reply who understand and know exactly how I'm feeling! Even though I have incredibly supportive friends, mum and boyfriend I don't know how to talk about it with anyone because I feel like I'm weird... Maybe that sounds strange but no one knows ANYTHING about this condition and I can't bring myself to talk to anyone about it.

So basically I have had extreme pain since the first time I had sex... three years ago (when i was 17 and am 20 now). About two months ago my fifth gyno finally diagnosed my condition as vulvodynia. It took 3 whole years to convince my gp that something was seriously wrong... only to be told time and time again "it's in your head" or "maybe you have chlamydia, let's do ANOTHER test" or "you might have cancer, here goes your fourth pap smear in six months". Finally I forced her into referring me to a specialist and was passed around until someone actually knew their stuff. Since then I've been seeing a physio who is lovely and supportive...

The problems I have had from the beginning are basically surrounding my inability to deal with this. I feel like I have no one to talk to, who understands and can help me. My boyfriend (same partner is first time) tries to understand.. He understands I'm in pain but what he doesn't understand is how much and why. He doesn't understand that, after three years (and might I add my entire sexual experience) I have only experienced gut wrenching pain and have never had anything even remotely close to being an orgasm. And in that time I have lost my sex drive... I mean it's still there but the thought of ACTUALLY having sex makes me feel physically ill. I know it can be good but my only memory is of something terrible. Lately I see how hurt he is by my rejection, but with my new attempts at physio I can't emotionally or physically handle anything more. I see him drifting away from me and I don't know what to do... I can't fake it anymore.

I feel so lost and depressed... someone please tell me everything will be ok eventually?!! And please tell me I'm not the only one out there.. because I feel so alone.

Sometimes I just wonder.. why did this happen to me?

You are definitely not alone. I often wonder why this happened to me too. My entire life I did all the right things with my hygeine down there and always used protection, but it still didn't matter. It frustrates me to no end.

I'm so sorry about all the problems you are having. I don't like to talk about this with anyone either, except my husband. I feel embarrassed, but I know I shouldn't.

Hopefully the pysio and specialist you're seeing now can offer some relief. I know it seems hopeless, but hang in there.

Dear Aussie Girl

I am so very sorry you are suffering with this disorder. I am 27yrs old and I live in Massachussetts USA. I have been suffering since I was 18 with a variety of different symptoms. I did not get diagnosed with vulvodynia until sept 2010. Drs are such morons sometimes! I am currently seeing a anasthesiologist who is trying different meds to get my pain under control. Its hard for me to have faith in anyone entirely since I have been disappointed by every doctor I have seen. My mother and friends keep telling me to have faith that someone will finally get to the bottom of why I have pain. Im trying to hope but im afraid to hope. If you ever need anyone to talk to please don't hesitate to private message me. You should read my other posts. Its very important that you record the dates and everything you have tried with each doctor. That's what I've been doing.

You say you have never had an orgasm. Before you had sex when you were 17 had you mastrubated? I am only able to reach an orgasm through clit stimulation and I know its true for most girls. Friction in my vagina does nothing for me, it only causes pain. Sexually what I enjoy is having my breasts played with being kissed and stimulating my clit slowly pausing in between. If you don't enjoy sex with a man then maybe sometime when you feel in the mood you should do things you enjoy by yourself. Once you feel comfortable with being sexual again maybe tell him what you enjoy. Have him watch you perhaps? Its just an idea. I don't mean to sound pervy im just trying to help. Im really sorry you suffer. I suffer everyday and im also not able to handle penetration without the consequence of more pain after. I thank god I have breasts and a clit to enjoy.

No I hadn't.... sex with my boyfriend was pretty much my first sexual experience.... so you can see why I'm so negative! I have pain upon penetration, during penetration, after penetration... you name it! I can see that the physio work is helping but I know it's not going to be some quick fix where I'm going to be suddenly perfect. I'll have to battle with this for the rest of my life and I think this is what is getting me down at the moment. I'm just so tired. And I've always been someone who needs to talk about these things with my friends but I don't know how which makes it worse..

Hi Aussie Girl,

I'm sorry to hear about your troubles... I'm 24 and was diagnosed with Provoked VV last year... I just wanted to let you know that I can definitely relate with not being able to tell my friends... I eventually told some of them after I was diagnosed... and they were actually very supportive about it... one had dealt with pelvic pain because of an STD (something she also hid from most people and didn't tell me til i told her about my VV)... and another dealt with a ruptured ovarian cyst... so they knew what it was like to be poked and prodded at down there... not to mention dealing with pain... just a thought... it is different sharing with a girlfriend... i hope you are able to find that support....and you can always vent on here

Take care,
Mars

Hey young aussie!!

Your feelings of depression, isolation, and utter frustration are totally normal!

Im of the mindset that: Unless I am speaking with someone who has V or VVS, no one else will EVER be able to understand the physical pain that we are in on a daily basis,..PLUS the mental and emotional toll this disorder takes!

Count your lucky stars you have a supportive bf, family etc etc....but nonetheless, its still hard to deal with, I understand.

Anyways, we're here for ya!!

*hugs*

I am 23 in Qld where are you?

I found a vibrator helpful in decreasing pelvic floor tension. As well as physio.

Remeber, don't give up! keep searching and you will find something that works.


Best advice: don't rely on doctors to help you - I have paid out of pocket to see people that know what they are talking about. Doctors (the majority) have too many patients to worry about to concentrate on something they don't know how to fix!! Research as much as you can and take your research to your doctors.

Vaginal Valium decreases muscle tension too. Not here in Aus yet. You can get a regular valium and put it up there at night. About 10mg should do the trick.

Any questions just ask.