vulvar lichen sclerosus

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vulvar lichen sclerosus

by jj205 on Sat Feb 28, 2009 12:00 AM

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i am scheduled to have a partial vulvectomy in april due to lichen sclerosus.   there is no cancer involved, altho i am told that the chances are greater w/ this condition.  does anyone have any info as to what i might expect from surgery?   tks

RE: vulvar lichen sclerosus

by Carol123 on Mon Mar 02, 2009 12:00 AM

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Are you seeing a GYN oncologist?  If not, please get a second opinion.  I have not heard of vl sclerosus being surgically removed.  Anyone out there know about this?

RE: vulvar lichen sclerosus

by jj205 on Mon Mar 02, 2009 12:00 AM

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On 3/2/2009 Carol123 wrote:

Are you seeing a GYN oncologist?  If not, please get a second opinion.  I have not heard of vl sclerosus being surgically removed.  Anyone out there know about this?

yes i am seeing a gyn/oncologist at UAB (univer of al at b'ham).  my reg gyn retired this past july.   he had referred me to this dr. about a yr ago.  this dr, as did my reg gyn, gave me the usual ointments to try but they did nothing.  he said to come back in about 6 mo if i didn't see improvement.  my reg gyn did 2 biopsies thru the yrs which left terrible deep scars.   lichen sclerosus is heck on scars....which makes me worry about this word "skinning" used to describe vulvectomy per wikipedia.   yes,  what kind of a crude terminology is this for a women to read??   i would just appreciate some1 who knows more details to write in.    i really appreciate your comments and suggestions.   tks 

 

 

 

 

 

 

 

 

 

 

 

 

RE: vulvar lichen sclerosus

by allyummystuff on Fri Mar 06, 2009 12:00 AM

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Hi there, I have LS and also belong to an online LS group that you can find here:

http://groups.yahoo.com/group/LichenSclerosis/

I am wondering what you need the vulvectomy  for? I am not an expert by any means on LS but a Vulvectomy is usually done for Vulvar cancer or VIN. I have never heard of any treatment for LS that involves a vulvectomy.... Please check out this online group. The moderator or the founder of this group is Dee Troll, I believe and she has devoted her near entire life on researching LS and will be able to answer almost any question that anyone might have.They are amazing and the support these mostly women give is unbeat by any group. You can join first, then begin to ask your questions. Please get a second opinion before having the radical vulvectomy.That is treatment for vulvar, clitoris, and all other parts of  our vulvar, cancer. This is a very important and extreme but documented treatment for vulvar cancer.. What other information do you have for your diagnosis of LS?

RE: vulvar lichen sclerosus

by jj205 on Sat Mar 07, 2009 12:00 AM

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On 3/6/2009 allyummystuff wrote:

Hi there, I have LS and also belong to an online LS group that you can find here:

http://groups.yahoo.com/group/LichenSclerosis/

I am wondering what you need the vulvectomy  for? I am not an expert by any means on LS but a Vulvectomy is usually done for Vulvar cancer or VIN. I have never heard of any treatment for LS that involves a vulvectomy.... Please check out this online group. The moderator or the founder of this group is Dee Troll, I believe and she has devoted her near entire life on researching LS and will be able to answer almost any question that anyone might have.They are amazing and the support these mostly women give is unbeat by any group. You can join first, then begin to ask your questions. Please get a second opinion before having the radical vulvectomy.That is treatment for vulvar, clitoris, and all other parts of  our vulvar, cancer. This is a very important and extreme but documented treatment for vulvar cancer.. What other information do you have for your diagnosis of LS?

thank you for your yahoo support grp suggestion.  i signed up today and am still waiting to get into the site to ask many questions.   i have never felt comfortable w/ the comments the dr made.  i just haven't felt "right" about such an extreme precedure, but haven't found any1 to answer my questions yet.  thanks again for taking the time to help me (and hopefully others)  w/ where to get good information..  my diagnosis was made about 10 yrs ago.  nothing has been done for me except appying creams which have not worked.  the area around the clitoris is what has made me go to the surgeon.  he said he would have to cut around the hood and did not know what feeling i would have after surgery healed.  everything has been too vague. 

 

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