21 with Vulvodynia

Hello! My name is Katie. I am 21 years old and I was diagnosed with vulvodynia about seven months ago. It has been a long journey. Bouncing from doctors with no results, different medications (Medications for misdiagnosed conditions! Even worse!), unable to barely get out of bed or move, lots of anger, sadness, anxiety, tears... you name it... until I was finally referred to a vulvar specialist. He realized I had a severe case of Vulvodynia and decided that I should try a tricyclic antidepressant called Pamelor. Within a month I was 85% pain free and have remained so, and with my insurance a months supply of medication was only $20! Since then I switched to Gabapentin (Used to treat nerve pain and other issues.) because Pamelor made me too lethargic for my lifestyle (Very busy college student.) and it has been great as well! I've been able to have fairly comfortable sex and I can wear jeans and underwear again! (Large goal is to finally be able to use tampons again!) I became a member here to share my hopeful story with others suffering and to seek advice and support for myself as well. (Note I still have bouts of severe pain.) Especially providing support to young women like myself stricken with this debilitating and relationship straining condition.

Katie,

My name is Lisa and I live in the USA state of Massachussetts. I am 27yrs old and have been suffering for the past 9yrs on and off with vulvodynia. The past 4yrs have been the worst for me. Like you I have bounced to 9 different Doctors. I was misdiagnosed with yeast infections 3 times and given yeast creams and yeast pills. I feel your frusteration! My pain is really really bad. Im doing the best I can and I am trying really hard to find hope inside myself. Its so hard to hope, Im afraid to hope, because Im afraid of being disappointed again. I am unable to wear pants, I can only wear skirts. I am also unable to sit without pain. I have to sit on frozen gelpacks. Cold water rinses, fans, and frozen gelapcks profide me with the immediate releif I need. I was on gabapentine for a yr. I am now on Lyrica which is the stronger modern version of gabapentine. I was on cymbalta also (an antidepressant). The only problem I had with that drug was that it made me sleepless at night. Now I am trying Vicodine with my Lyrica. I hope it helps. Where do you live? You can feel free to message me anytime you like. Im trying hard to start a support group in my area. I have spoken to a few women with pain but they are 2 hrs away. Its too far a drive for me. If you know anyone in Mass that lives on cape cod please let them know Im hear.

I live in Texas. Did Gabapentin not work well for you? It's working pretty well for me so far. And I know how you feel. It was starting to get cold here in Texas and I was still unable to wear pants at the time. So stressful.