RE: [VPD]question on Lichen Planus

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,

If you really think you have LS you can also join the Yahoo LS

group. They were extremely helpful to me when I was first diagnosed.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of euc1109 s

Sent: Wednesday, February 20, 2008 10:57 PM

To: VulvarDisorders

Subject: Re: question on Lichen Planus

Mindy,

What do you mean by white streaks that wipe away??? I

know it's probably not very easy to explain but I

don't really know what you mean.

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,Try this. There were some extra spaces that somehow appeared in the first version:http://health.groups.yahoo.com/group/LichenSclerosis/ Yes, the fusing that can occur with LP and LS can reverse in some cases. Dee Troll,the owner of both this and the LS group, is one of the real success stories in thisregard. She had years of awful undiagnosed vuvlar irritation and, after reading aboutand trying topical estradiol on her own, completely unfused her labia and healed herraw hamburger (her description) skin. Some women do not regain the labia or completely unfuse their clitoral hoods, but almost all, with some combo of estradiol,testosterone, and/or steroids and other non-steroidal anti-inflammatories, experiencea vast improvement in their symptoms. There are excellent files on the group thatwill give you a wealth of information and, as i said, the people there are greatand extremely helpful.Here's Kellogg-Spadt's practice's website:http://www.pelvicandsexualhealthinstitute.org/ I think i had to wait something like a month and a half or two months for an initialappointment with her, but if you were to see one of the other NP's that work with her, the wait would be shorter. My feeling was that i wanted to be seen by thehead honcho for at least the first appointment, but now i like her so much, i reallywant to stick with her, even if it means longer waits.Good luck. I know how upsetting it is to see changes in your vulvar skin/architectureand not know what's going on. I hope you can get to someone somewhere beforetoo long and get some answers and, if necessary, some treatment started.HollisI tried the link for the LS group but it didn't work and the only lichen group i see is for lichen planus- is it the same group? Also, am i correct in understanding you that if it is lichen and you treat it that if there is fusing, it can almost be reversed with treatment in some cases? Hmmm Philly- I know i could take a quick plane trip there for something like $80- maybe i'd be able to get in with her much sooner than dr. stewart if i needed to- is she hard to get an appointment with? Thanks, hgz <hgz (AT) verizon (DOT) net> wrote: , I would strongly, strongly urge you to join the Yahoo LS group, which also includes women (and some men) who are dealing with LP. Clob is not the only medication used. As Melinda mentioned, estradiol has been used very successfully by many women to prevent/undo/ repair fusion. And there are other meds, steroidal and otherwise, that are used to quell the inflammatory response and allow the body to heal itself. It's a very active and supportive group that could, i feel, really help you right now as you're faced with all this uncertainty. In September i was just where you were now -- freaking out over seeing my inner labia starting to fuse and not knowing if i could get back to a vuvlar specialist ( Kellogg-Spadt in Philly) in time to save it from totally disappearing on me -- not to mention being so scared that my clitoris and vagina would be next. I was fortunate: the fusion has, at least for now, stopped, i've had some re-emergence of one of my labia, and my general vulvar skin condition has improved so much that said she wouldn't want to do a biopsy now even if i was open to it (which i wasn't). The information and support i got from the group was invaluable and i really think you could really benefit from it. The link is: http://health. groups.yahoo. com/group/ LichenSclerosis/ Hollis > , If you really think you have LS you can also join the Yahoo LS group. They were extremely helpful to me when I was first diagnosed. nne From: VulvarDisorders@ yahoogroups. com[mailto:VulvarDisor ders@yahoogroups .com] On Behalf Of euc1109 s Sent: Wednesday, February 20, 2008 10:57 PM To: VulvarDisorders@ yahoogroups. comSubject: Re: question on Lichen Planus Mindy, What do you mean by white streaks that wipe away??? I know it's probably not very easy to explain but I don't really know what you mean. ____________ _________ _________ _________ _________ _________ _ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ ___________________________________Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.