RE: Re: Vulvodynia and Vulvovaginal Lichen Planus

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Hello,I can relate SO MUCH to your post. I am 28 now, but have been having symptoms since around age 15. Your post sounds like something I would have written when I was finally given a diagnosis in my early 20's. I have VVS and pelvic floor dysfunction, as well as IC, and some dermatologic issues. I know what it's like to never feel 'normal' down there, with sex or just going through the day. I have only been able to have sex a handful of times without pain, and that was when I was using Capsaicin cream and going for PT regularly. As far as men go......well, I was with my bf for 7 years, and we are breaking up now - (not related to sexual reasons, but because we are really different and I just can't deal with him anymore). For all the problems we've had over the years, I have to say that he never pressured me for sex or made me feel inferior in any way. Although we didn't talk about it all the time, he knew about my pain issues, and was supportive of me and my various treatments. We even went for 2 years with no intercourse, during which I didn't hear a complaint once. We found ways to be intimate that didn't alway include actual sex. I actually realized that one of the reasons I didn't break up with him sooner (like years ago), was because I was afraid of not finding another man who would accept me with my pain/sexual issues. Now I wish that I hadn't had such low self-esteem in that aspect, because I really do think that there are great men out there, who will be understanding and supportive. Like my friends have told me, if it's not one thing it's another. I'm sure you are much more than a vagina ;-) As cliche as it sounds, giving yourself time to get used to the diagnosis, doing your research and just talking about it will help you to get through this. It sounds like you are doing this already, so you are well on your way. Crying does help, and so does talking to friends or people on these websites. I have gone through periods of feeling extremely low and like 'less of a woman', but I have always been able to pull myself back up by concentrating on all the other things in my life other than gyn problems. Honestly, I have become so used to all of these diagnoses now that they are just part of my life. Sometimes it gets to me, but for the most part I have learned to life with it. There are many mixed opinions about this, but I also take an anti-depressant that helps me to think clearly and cope with stress in a healthy manner. I know it's not for everyone, but I thought I'd throw it out there. best of luck,nicoleTo: VulvarDisorders From: crazgal1209@...Date: Mon, 28 Jan 2008 02:10:50 +0000Subject: Re: Vulvodynia and Vulvovaginal Lichen Planus

Have a little input on your issues, if u don't mind. I have had Lichens Sclerosis et Atrophicus since 1992 after first being told by my MD he thought I had cancer. This was after being told numerous times by another doctor the pain, itching, ulcerations. sloughing of skin and skin color changes were all because of 'moisture'. I was told to go sit on the toliet seat, even while at work, and 'fan' myself a few minutes. Mind you, if I had been a large lady, I could see that. As it was, I weighed abt 140 # then and am 5'5". As a nurse/paramedic in a busy ER, you could imagine how easy it was for me to follow those recommendations. I am a returning member to this site after being away several yrs. It was on this site that I discovered the Clabetasol which was mylife saver. What I have found with it though, is that it is best used for only a few days at a time. Chronic use will do just as you describe, cause more irritation, burning, & itching. This is a very potent steroid creme that will suppress your body's own ability to regenerate the tissue with continued use. Using it for 5-7 days with a few day break between should make a big difference. Use it primarily during 'flareups'. (I began having symptoms in my 20's as well)> >> > Hi, I'm 20 years old, and have just (about 10 days ago) been diagnosed> > with Vulvodynia and Lichen Planus. The Vulvodynia I've known about, at> > least peripherally from personal research, for a while, (I was 16 when> > I realized that my body wasn't responding right to being touched, and> > any sort of penetration hurt, which was confirmed when I lost my> > virginity a year later, and sex didnt stop hurting after the first few> > times....and it still hasn't.) The LP was a total shock. > > > > I don't think I have any lesions, but I already have structural> > changes, shadowing, and scar tissue where my inner labia are> > disappearing. I started a nightly regimen of Clobetasol, as well as> > Diflucan (because I'm in college, and far from my OB/GYN, so I'm> > taking it just in case, even though I don't have a yeast infection). I> > also have a prescription for Lidocaine, which i have tried to use in> > the past for intercourse, but it was not as effective as I had hoped.> > I'm not sexually active at this time, and I don't feel like I can be.> > > > I am now experiencing a burning and itching during the day that I have> > never experienced before, and I think it's a result of the Clobetasol.> > After calling my doctor's office, I applied Lidocaine to stop the> > burning, and the Lidocaine burned even worse...I was yelling...for> > 5-10 minutes, which I read is normal, but had never experienced before> > (especially to that degree) while using it.> > > > My biggest issues with these disorders are (other than the shock of> > having LP, and knowing that the structural changes I have now can> > never be reversed) an extremely diminished sex drive, or the desire to> > be sexual in any way, and my fear of guys not wanting to be with me> > because of these issues.> > > > I know it's silly, and all of my friends have told me that there's> > someone out there who's mature enough to be able to wait, and to be> > able to accept me, these conditions and all, I don't really know if I> > can believe them. > > > > Being loved by someone romantically, while it would be nice, is not my> > only concern. I am afraid of how my reactions to these conditions will> > affect my schoolwork, my drive to go out and do things that i enjoy,> > such as swing dancing, and my general quality of life.> > > > Since I was diagnosed, thinking about the LP (and to a lesser extent,> > the Vulvodynia, only because I feel like i have ttoo treat the LP first)> > has been all-pervasive. (I don't know if that's the right word. I mean> > to say that the LP has been in my thoughts pretty much all day every> > day, if not at the front of my brain, then in the periphery) I have> > cried every day since my diagnosis. I would really like to not do that> > anymore, but I guess it's part of the process of dealing with this.> > > > What I'd like to know (there are a lot of things, but I'll start with> > a few) is: Are there any methods that help get your mind off of the> > shock of initial diagnosis (other than just giving it time) and how> > does one begin to deal with such things? How do you talk about this> > with potential partners (I mean people to date)? When do you talk> > about this with someone you're dating (I realize that this is> > case-by-case, but are there any good markers)? Do other people feel a> > diminished self-worth, or like less of a woman? How do you begin to> > deal with that? Is anyone else on here around 20? > > > > I know this is a lot to read, but thank you for your time.> >>

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