Saturday, November 15, 2008

The Beginning

I don’t know where to start. I’ve never blogged before, I’ve never followed anyone’s blog, and I’ve never really used writing as an outlet for my emotions. Well, let me be honest, I don’t let out my emotions very often, period. But I need to tell my story. Tell it to the people I love, tell it to random strangers, tell it to anyone who will listen. I’m hoping that it will be therapeutic for me, but I won’t know until I try. The idea just came to me tonight. I’ve been keeping up with a blog written by another VVS sufferer. I found her blog on accident on a difficult night when I was up late trying desperately to find comfort in anything that I read. Trying to find any single piece of research that indicated that there was a way to overcome this. Trying to research the specialist at Drexel University that I was referred to. And there it was, right in the words of her blog. Comfort. Her strength and courage has inspired me to write this blog. So maybe this blog will do for someone else what her blog did for me. Or maybe it won’t. But there’s only one way to find out….

So here goes. I’m going to start from the very beginning. I was in a relationship that I never should have been in. I was in a relationship with someone that I was not in love with, simply for the sake of being in a relationship. He was a nice guy, but just not for me. And I was dreading the fact that I knew I was going to break his heart. But I needed out. I needed live. To party. To hook up with a stranger.

And that is precisely why I knew that I was going to meet someone in Miami. I confidently told my best friends that I was going to cheat on my boyfriend in Miami when we went in the summer of 2007. They were surprised because that is completely out of character for me.

And so I did. Well, technically I didn’t cheat on my boyfriend in Miami. But I met the hottest guy that I have ever seen. And he was into me. And here’s the bonus: he lived about a ½ hour away from where I lived!! This had to be fate. Who meets someone in Miami that lives so close to home? Anyway, fate or no fate, he was hot and I had to have him.

Now, before this point, I was a 24 year-old virgin. I was raised to believe that one shouldn’t have sex before marriage. I hadn’t met anyone that I fell for hard enough to break that. I had never had a serious relationship before my current boyfriend, and I wasn’t into my current boyfriend enough to compromise my virginity. I also loved that being a virgin differentiated me from everyone else and was “special” in some way.

One thing led to another with this gorgeous stranger, and I ended up having sex with him. And then I broke up with my boyfriend. Maybe I needed that push to leave. Maybe he came into my life to show me that there’s more out there. - that you could feel way, way, way more than I was feeling with my current boyfriend. So I left. And let me tell you, I was so relieved.

But, the relief didn’t last long. Needless to say, I began very quickly falling for this complete stranger. I had never been that intimate with anyone before. I had no idea just how intimate sex was. Well, I guess we can all predict the end here --- I very quickly ended up heartbroken for the first time in my life. After all, how could he possibly respect me knowing that I slept with him so quickly and cheated on my boyfriend? And, let’s face it, maybe he just wasn’t that into me. At the age of 24. I finally understood what my friends had been through. I finally understood what those scorn love songs were about. And it sucked.

But the story gets worse. After the first time we had sex, I had this awful, burning pain. I didn’t know what it was so, I went to the gyno. He said that I had bacterial vaginitis, and he gave me an antibiotic cream. Ok, simple enough I thought. No big deal, just your run of the mill vaginal infection and it had a cure. No biggie.

But then after I had sex with him a few more times, I think it was around November 2007, I started having the burning pain again. But this time, I ignored it. I don’t know what I was thinking. I graduated college with high honors. I work for one of the biggest accounting firms in the world. And yet, stupidly enough, I was too “busy” to go see a doctor. So I let it go on. And on. And on. And on.

Eventually, I went to see the same gyno. I can’t remember at what point that was, but I believe it was some point in late February or very early March 2008. I was so swollen, inflamed, and in so much pain that he could barely examine me. I remember gasping when he used a tool to examine me on the inside. What’s that thing called again, I always forget. Oh well, that thing. Well, it felt like a knife. I couldn’t sit still. I couldn’t believe how much pain I was in. I remember trying to sit up so I could see what he was using on me that felt like a knife. And he asked me for how long I had these symptoms. So I told him a few months. He just looked at me. He didn’t say anything. So I sat back up and he said “Let’s discuss treatment”.

And that’s when I first heard the word “Vulvodynia”. I asked him to repeat it; I had never heard that word before. I remember thinking to myself that I should really try to remember how to pronounce this so I could tell my dad when I got home, since he is a doctor. Anyway, I assumed it was something to the effect of a yeast infection that has gotten so bad that it was called vulvodynia. So I figured the treatment would be the same.

All he said was that he was going to give me a cream for bacterial vaginosis that I would have to insert, and that it would be painful to insert but that I have to do it. After that he said he wanted me to vaginally insert boric acid pills for two-three months. My reaction was “Wow, two to three months?!” and he said “Yes”. I was thinking to myself, wow, that was stupid, usually they give you one pill for a yeast infections, I guess mine got so bad that that I need to be treated for so long.

He kept saying that we would “take it from there”. I remember thinking, well, by that point it’s going to get better right? And I remember trying to get a definitive answer from him. And I didn’t really get one.

So before he left, he gave me a pamphlet on vulvodynia and told me to read up on it. I remember starting to read it as soon as he left the room and before I went to check out with the receptionist. As soon as I started reading the pamphlet, I began to cry. I left the doctor’s office crying that day, and sometimes I feel like I’ve never stopped.

I will get into more details about vulvodynia, vulvar vestibulitis, and what happened to me next in the coming blogs. I would greatly appreciate it if anyone who is going through the same things that I am would reach out to me and share your experiences/thoughts. I believe in collective healing and that the only way to heal emotionally is through sharing our experiences and being acknowledged. It may very well be a long journey to the day we are acknowledged by the medical community, but I believe that the first step is for us to acknowledge and support each other.


Tamra said...

I wanted to thank you for sharing your story. I know it's not easy. But I think there's no greater relief than being open about it and putting it out there for the world to see. It's not fair that we should continue to hide just because some people are uncomfortable with the vagina.

I remember crying uncontrollably the day I found out what vulvar vestibulitis really is. It was one of my darkest days. But I am finally beginning to have some hope. Just wanted you to know that I'm here if you ever want to talk or have any questions.

Jessica said...

I am so thrilled that you are sharing, and in turn helping others, like myself, to realize that sharing may help the healing process

Emily said...

I remember the night I was convinced that I had VV - I knew that there was something going on that wasn't a yeast infection and wasn't a UTI - so what the hell was it? I'm a nurse so at work one night I delved into some clinical literature. I knew about vulvodynia, but VV fit the bill more. I got off work and balled - bitterly cried myself to sleep. The first practitioner I saw thought I was being silly and overreacting. She found a bacterium (gardnerella - causes bacterial vaginosis although I had no symptoms of the infection) and gave me some Flagyl vaginal gel (I called it Flagyl Vagyl). So I did that and it seriously pissed off my vulva and did nothing for my symptoms. Probably just killed off an asymptomatic bug - who knows maybe it was causing trouble or is related to the VV. I went back to her and said "look - I finished the Flagyl 5 days ago and I feel worse. I think there is more going on." She blew it off and prescribed me some yeast medication which I never took. So a month or so later I finally get an appt with another practitioner that I had tried to see earlier but always has a long wait. She was so empathetic and supportive I started crying right there on the exam table. And she got out her trusty q-tip, did a thorough exam and came to the same conclusion as me - VV. There was one funny looking area right where my point-tenderness is that she biopsied, and that hurt for almost 2 weeks (and pissed off my vulva!). So now I guess I start the treatment phase and I hope we try the right ones and this resolves quickly - relative to VV, that is.

cindy said...

vv i beleive is the worst condition anyone can have, including myself. get hooked up with a gyno/urologist and you will find the light in the tunnel. There are pt that can help, creams and medicines.

Céline said...

Oh how I wish to know how you're doing! I'm having a discouraging day with my vulvar vestibulitis. I've been doing physiotherapy for it for 2 years now. My gyno has tried convincing me to get surgery for it... I'm getting conflicting feels from my physiotherapist who believes I'll still be back in her office due to scar tissu and stuff if I go with the surgery... I feel malinformed, conflicting surgery success rates. I'm able to walk, exercise, not wear tight pants... I sometimes use a cream...
I'm confused as physio gave me muscle exercises and things which have helped as it helps bloodflow, but I'm also understanding that it's caused by reoccuring yeast though I never get that white cheese discharge everyone keeps describing as yeast infections... I know I don't have an STD, they keep testing in case whenever you complain about pain and/or after sex pain. My partner is amazing, we find ways to still be intimate, but I feel anxious it will start to take it's toll. I think about sex, I get in the mood for it... I get discouraged and feel like I'm responsible for whether or not it gets better based on my decisions (though that's partially unlogical and brings more guilt than should be attributable). I just don't believe in having surgery for it if I'm not sure it'll help.

How are you? Has anyway talked to you about surgery before?

Erin said...

Good story, I know exactly how you feel. I discovered I had VV in 2008, I started dating my BF in 2007, everything was great, sex was fun and felt great. But after about a year I started having really bad stinging pain the burned and got really inflamed when I would have sex. So I went to my gyno and she tested me for it by using a Q-tip on my vagina and she asked me if it hurt and I said yes, which I had all the symptoms of it so she said that I had VV. I remember going home and crying my eyes out, never had I imagined this could happen to me. Now I'm trying to cope with it as best as I can, it has def taken a toll on my BF and I. Sex is just not fun, we try different stuff but nothing ever seems to be the same. He has stuck by me and I'm so happy that he is in my life, but I just wish they could find a cure or something that works to heal. I don't think I can go on like this forever.

ToxicTigress said...

I'd love to hear where your "quest" with this has taken you in the years since this post. I myself am dealing with a similar struggle.

Céline said...

I would also like to know where your quest has taken you since starting this blog?..
As anyone explored surgery - whether they went through with it or not, specifically for those who don't have wide-spread pain but localized at the bottom/6 o'clock area??

Melin said...

A few of you have questioned surgery, so I thought I would share my experience. I lived with VV for at least 12 years before I was properly diagnosed. I had been through a number of doctors, exams, and tests. I was treated in 1998 for BV during my first pregnancy. From then on, I couldn't seem to get rid of it. I had it about 3 times every 2 months on average. Finally in 2007, I guess I finally saw the right doctor who decided to do the Q-tip test and discovered that I had a severe case of VV and recommended surgery. I figured why not, it can't get worse, right? Well, I had the surgery which wasn't so bad. I woke up asking if they had done it yet. The worst part was the follow ups. I had to have steroid injections into the surgery site every 3 weeks for 3-4 months. That may have been the worst pain I ever experienced in my life...and I have given birth to two beautiful children without an epidural. It has been 4 years since that surgery and I have never experienced a single BV infection or pain in the vulva area...that is until now. I am currently pregnant with my third child and was treated less than 3 weeks ago for my first BV infection in a long time. I too believe that the flagyl vagyl has pissed off my vulva and the pain is worse than I remember. Would I have the surgery again? Probably, being pain free for 4 years has been wonderful. Whatever you decide, I wish you the best!

June said...
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June said...

I was first told I had Vulvodynia in 2005 after complaining of pain and pressure in my vaginal area. I had been seen by so many doctors and then I was sent to a urologist. It turned out that my bladder had fallen and he diagnosed the vulvodynia immediately and began treating me with an antidepressant. I had the surgery to lift my bladder and the vulvar pain subsided. Now here I am in 2011 suffering from vulvodynia once again. I am taking an antidepressant(Wellbutrin) and have gain about 15lbs in 1 month. i am not happy, but it is good to know this is not all in my mind and others are suffering with this as well. I have constant BV infections and that's a pain as well. I would love to have the surgery to end all of this pain, but my doctor says no. Thank you all for sharing your stories. SN: I am African-American/Native American and I've read Vulvodynia is not common for us, so it's really depressing for me. I'm feeling like the odd one out.

by Wendy Leaumont said...

Are you still having trouble with VVS? Please email me. I have recently been "cured" by going to a physical therapist who knew what she was doing!! I had been to therapy before and it did NOT work because it was the wrong approach. Please email me if you'd like to hear about how I've gotten over this. My case was one of the worst the docs had EVER seen. - Wendy

sally cameron said...

What therapy did you do