Six years ago, when I was 19 years old and a sophomore in college, I found out I had vulvodynia. The pain began in November and I was "diagnosed" in January, which I know seems pretty lucky, considering many women go for years or for life before ever being given a proper diagnosis.  The problem was, of course, that the diagnosis was just a word.  My gynecologist at the time, who had misdiagnosed me as having the STD trichomaniasis, 2 yeast infections and bacterial vaginosis, told me she believed I had vulvodynia, but there was really nothing she could do about it.  I was sort of happy and depressed - here I had a name for this unbelievable discomfort that was consuming me, but I wasn't going to be able to make it go away?  I remember leaving the doctor's office and going home to my mom's house in New Jersey to pick up my first bottle of what would turn out to be useless pills.  I tried neurontin and Vioxx, celebrex and Elavil - all "commonly prescribed" drugs for vulvodynia.  None of them worked, and I lost hope each time I tried another bottle to  no avail. 



I was so incredibly depressed.  Up until that point, I had been a pretty, social, and smart student at NYU.  I had a great group of friends and was learning the fun of not only college partying, but NYC partying.  I worked out, I had a job and I was doing well in my classes.  Not to make my life sound perfect, because it wasn't, but I had been content - even happy. I cannot quite explain the way my life turned around after living for a few months with vulvodynia.  I was hopeless, dejected and a recluse.  I went to class and came home and slept.  I began what continues to be a lifelong struggle with sleeping pills and marijuana, because they were the only things I found that could truly knock me out of my consciousness.  The pain was intense, the itching was intense and even though I had the "vulvodynia" diagnosis, I felt damaged, insane, and EMBARRASSED.  I was so embarrassed of what my condition meant for the rest of my life - no boyfriends?  No sex?  Common fears among our community but valid ones nonetheless.  I was always moody and in a lot of pain, but I could not, and still can't, tell my friends or family exactly what I have.  Those closest to me know I have "Chronic pain", but only a few know where it is, because for me, the biggest psychological effect I've felt is shame and embarrassment.  I was also angry.  I was angry at every single other woman I saw - on the train, on the street, in class, at the coffeeshop - because their vagina did not hurt all the time, and mine did.  I started to feel like God, or whoever was controlling the universe, was playing a trick on me.  Here he had put me, this pretty, funny, smart girl on the earth, and took away her ability to enjoy any of it.  I was mad, and I didn't want to give up.



Over the course of this first year, I was recommended to several doctors.  One doctor, the "vulvodynia specialist", was about 75 years old and prescribed me pain medication that didn't work.  He also tested me for a gene, but never explained to me what he was looking for.  I think he was called the vulvodynia specialist because he was one of the few doctors who knew who it was.  



At this time, I began acupuncture.  I did it because I saw that these doctors did not know anything, and I figured I'd have to go another route.  I was not at all acquainted with eastern medicine, but I kept an open mind.  Luckily, I really liked my acupuncturist, and although he had never heard the term vulvodynia, he was very good about doing research and reading about it his own in order to figure out how best to help me.  Although many of my sessions were a brief respite from the pain, acupuncture is a SLOW process and for me, a financial burden. I went through the most painful summer of my life that year - like many of us, I had suicidal thoughts and I could barely make myself get up in the morning - everytime I opened my eyes, I dreaded the next 12 hours. But I stuck with acupuncture, and I can say that after about a year or so of weekly treatments, the vulvodynia subsided.  My acupuncturist had also been prescribing herbs for me to take on a daily basis - they were liquid and tasted awful, but I took them every day, and I believe these contributed to helping me feel better.  I stuck with acupuncture through what was a generally painfree junior and senior year of college.  When I graduated, I moved back home for 6 months and stopped the process.  I was in Jersey, 45 minutes away his office, and I became consumed with finding a job, getting money and getting out of my mom's house!  I stopped going to acupuncture, and I got a job and moved back to NY.  I continued to drink and smoke and eat crappy foods.  I never thought about the toll this was probably taking on the inside of my body, because I wasn't seeing the effects on the outside of my body.  My job started out as a pressure-less assistant job, but quickly morphed into a stressful, busy, underpaid overworked existence.  In March of 2006, about 2 years since I'd felt any of my vulvodynia symptoms, I took a weekend trip to D.C. to see some friends.  I had sex, and about 6 hours later, the pain was back.  I was alarmed, terrified, depressed, and shocked.  When I returned home, I prayed it was a yeast infection, but I knew it was the VV.  It was all of that same pain that I'd been dealing with two years ago, and the memories had come flooding back.  After about a week, the pain went away, but I went running back to acupuncture to continue treatment.  Over the next six months, I would have a flareup here and there, but I was generally alright.  Then in November, everything came back, and at full force.  The depression set in again with a whole new set of worries.  I had a job now and I couldn't just "skip" it, as I had done in college with class when the pain was too intense.  I worked with 3 beautiful, perfect women who probably had never heard of what I was going through and I had no desire to tell them.  So I kept it to myself, but I became moody and angry and reclusive.  I stopped eating lunch with people, I was getting trouble for having a bad attitude, and I came across as anti-social and mean.  It sucked, because in reality, I was sad and hurting, and I couldn't tell anyone. 



The acupuncture, as I said, was a slow process, and I knew it would take another 6 months to a year to undo all the damage I had been doing to my body over the previous few years, with drugs, alcohol, and basically running it ragged.  I wanted to get rid of the pain and I did not want to wait, so I decided to try reiki and energy healing.  Because the reiki practitioner I found had suffered from vulvodynia herself, I felt sort of safe going there, and I would not have to explain myself and my symptoms and get only a blank stare in response. Though I am not at all skeptical of eastern medicine and spiritual healing, I was a very angry girl when I began reiki.  This interfered with my ability to have successful sessions.  But over the next few months, I learned some of the most important lessons I have ever learned in my life about the way my body and my attitude connect. 



I want to preface the remaining part of my story by saying that I in NO WAY believe that vulvodynia is a psychological condition.  It is 100% real.  That pain is real, that itch is real, and none of us make it up.  But I want to stress that through reiki and spiritual healing, I learned that my stress levels, my uncontrollable emotions and the way I treat my body has a direct effect on my vulvodynia.  I was so tightly wound, and so angry and hurt that I held everything inside, and it got stuck and aggravated my symptoms.  I began to learn how to breathe, how to stop being so angry at everything, and how to deal with the pain and stress in my life in an emotionally healthier way.  I literally began to change the way I processed information, and that began to change my life.  I also started eating healthier, which any acupuncturist or even a medical nutritionist would suggest.  I basically cut out the crap, and do my best to follow a yeast-free diet, because several people familiar with VV recommended it to try.  I'm not sure if it has really done anything for my VV, but it has certainly made me 10x more conscious about my food choices, and it helps me keep my body weight under control, so I stick with it to the best of my ability.  I am now at a place where I have begun to analyze my bad thoughts, and correct myself when I'm being irrational or damaging to myself.  Again, it's an ongoing process for me and a difficult one, but I am learning to discover what I really want from life, and that whatever it is I want, I can make it happen for myself.



How does all this relate to my current vulvodynia? Well, it's a lot better.  It is not gone, and at this point, I don't know if it ever will be gone. I still have painful days, but I have a lot of good days inbetween - enough to keep me positive about the future and to know that I can take this condition into my own control.  I am not hopeless, and I do my best to live a normal life, not thinking about the VV and trying to assume that each day will be better than the next.   I know that changing the way I deal with problems and the way I deal with VV has positively changed the severity of the symptoms, for the better. 

You can contact Sarah at stripes507@yahoo.com