Re:Vulvodynia and Vulvovaginal Lichen Planus

[Guest guest]

Hi lichdesign, I feel compelled to write back to your email. I have had V symptoms most of my life, and a wide variety of people dismissed my symptoms as all in my head. I was only first diagnosed in Oct 2007, and I am 43 years old. At one point, I felt it was lke a big conspiracy- that sex rally did hurt, only NO ONE would ever admit this. -Which sort of speaks to how many friends I ever disclosed this 'problem' to = 0. I admire you that you have obviously been able to have trustworthy people in your life, and you have gotten a diagnosis relatively quickly, judging by what I have read on this chat room. I can relate that being formally diagnosed in Oct only confirmed what I already know about having vulvadynia. I was SHOCKED to hear the lichen word also applied. I was soo enraged to thnk the anatomical changes I had were from this disease... and all I had ever

been told in the stirrups was "evreything looked normal"- so many medical professionals insisted I had 'normal varient strcuture.' Oh brother! What I can say is that I am a little less angry now and more accepting of the diagnosis. I did not believe that I would ever be able to say that, but after these 4 months, it has happened. I also am on a clob and ldo and diflucan regime. My original clob and lido Burned me really badly. At first I tried to pass it off as me 'just being sensitve', but after 2 weeks I called my Dr and they called in a new order for compounded ointments. These also burned, and I gave up in quite a bit of despair. Finally, I went back to me Dr and actually met with a RN who was Great. She advised mixing clob with vasaline, and using it at night only. I was sceptical, and it even took me 2 weeks to have the courage to try that. I was/ am so afraid

that nothing will help. But I am happy to say that after 3 weeks I had a noticebale improvement. Tests at my recent follow up visit confirm this. Still far from perfect, I am discouraged but my Nurse is hopeful- she is right when she points out I have had this thing for 40 years, it will take some time to curb it. So my advice is : try different combos, adjust them to your body (it is ok to do that.) Keep doing research and reading this board to keep up to date (THANKS to eveyone who shares their research). Keep in touch with your Dr's office. You mentioned it is far away, but much of this should be able to be covered over the phone. The hardest thing is to not give up hope. Good luck,

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