I wish I had the idea for this blog sooner. I am overwhelmed because I have no idea where to begin. I think it might be best to give a general summary of what has happened over the past 7 months. A note: One of the problems with having vulvar vestibulitis is many people are uncomfortable talking about it. It is considered taboo for a woman to talk about her vagina, which is why I feel so many women who suffer from vulvodynia feel alone. The purpose of this blog is for those women to read about someone else going through the same thing they are and realize they are not alone in this fight. I will not withdraw information from my story because then I am telling these women that they are alone and not giving them useful information to help them through the difficult times. So yes, we will be talking about problems dealing with the vagina, and if you are not comfortable reading about that, then I suggest you either make yourself become comfortable or stop reading now.
I started noticing a centralized pain during sexual intercourse at the end of July in 2007. I had just recently switched birth control pills. I went with my mom to our gynecologist office and she told us the pain might be due to the switch in pills and to simply wait. I waited a month, hoping my body would adjust itself, but the pain was getting worse. I was starting to notice it on a regular basis, going to the bathroom became painful and I couldn't touch the area. I didn't even attempt sexual intercourse and have not since the end of July because it is impossible for me.
Soon it was September and since I was back at school, I went to Planned Parenthood on my campus, who assured me the pain I was having was a simple yeast infection. I spent a week applying the appropriate cream, with my symptoms only getting worse. At this point, a chain of events occurred. I went back home to my gynecologist who said I might have a urinary tract infection and put me on the appropriate medication. Then, a couple days later, back on campus, I received a sharp stabbing pain, that was centralized around the vulva. It was almost unbearable and I drove myself to the Emergency Room hoping for relief. I was not treated well- an old male gynecologist who was working that night was convinced I had an STD and forced me to get a very painful shot and take medication. He did not listen to me when I told him I had not come even close to having sexual intercourse for over 3 months and had already had tests at my gynecologist office. Because of this experience, I refuse to go to the hospital again, no matter how bad the pain gets. I am appalled that they did not listen to me and treated me so poorly.
After the Emergency Room, I was picked up by my mom (yet again) and taken back to my gynecologist office and they said my tests for a UTI came back negative and it seemed the wrong diagnosis because my pain wasn't inside the vagina. I dreaded going to the gynecologist because the exams were incredible painful. I like to think I have a high tolerance for pain, but I could barely keep my legs spread when the duck lips went in or when I was being touched around the area. Finally, after many visits, one gynecologist mentioned the name vulvar vestibulitis to me. I was actually relieved the first time I heard the name because I just wanted to know what was wrong with me, so I could take the appropriate medication, and go back to a normal life. She explained to me the "Q-tip" test that is done for vulvar vestibulitis. I sat in the chair, and she touched several areas of my vagina with a q-tip, extremely lightly. When she finally touched the bottom half of my vulva, I nearly jumped off the table because of how much pain it caused me. She then decided to take a biopsy of my vagina, which was a pretty awful experience. She had to numb the area with two needles in order to cut a piece of the skin. And if I was jumping off the table in pain due to a q-tip, you can imagine how two needles felt. I was in a lot of pain for awhile afterwards.
I guess that was my period of "misdiagnosis." I actually consider myself to be very lucky. Many women I have talked to or read about have gone years before the condition vulvar vestibulitis is even mentioned to them. I consider myself to be even more lucky because a female student who sat next to me in one of my classes I was taking in my fall semester actually has vulvar vestibulitis. When we finally discovered we were both going through similar situations, she immediately recommended me to Dr. Nyirjesy at Drexel OB/GYN in Philadelphia. Because of her, I bypassed months, maybe even years of trial and error. She herself had spent a year of misdiagnosis, and I am so thankful she came into my life. She is one of the main reasons I started this blog. I want to return the favor and provide awareness about vulvodynia, especially vulvar vestibulitis, so I can make someone else's life a little easier.
My next update I will spend talking about my experiences at a specialist and where I stand today. As I'm looking over this post, I'm upset that automatic spellcheck does not consider vulvodynia and vulvar vestibulitis to be words. I run into the same problem when typing papers on Microsoft Word. It's certainly scary and intimidating to be associated with such an unknown condition. I have been so stressed, anxious, and upset over the past 7 months because I did not know what was causing my pain. I think most of us are most afraid of the unknown. Every day I hope for more information to be found out. As of now, I do not know why I have vulvar vestibulitis or how to properly fight it or when I am going to get better. And that scares me every day. But I am trying my best to take it one step at a time, one day at a time, and to just keep fighting and not give up.
Wow! That was quite a mouthful for my first post. I hope it wasn't too much to take in!
