Finding a cure

[LongRedHead]

First of all, I want you to know that I have had biopsies that have come back and I am positive with Lichen sclerosus.  It is a devastating disease.  However, I got online and went to the medical journals and read all I could read.  I have learned about the different treatments. 

Estrogen does help to slow it down.  I really do believe that.
Clotbetesol that slows it down too.

However, what I want to do is get the stem cell transplant done so I can put it in remission.  I have read so much about that and have heard that it does work.  There are a lot of doctors out there who don't know that much about this disease and how to properly treat it.  They are not doing a good job at treating it at all.  It breaks my heart that so many people on here and other places are struggling so bad.  Here is what I will tell you... I took matters into my own hands.  I am a nurse.  I am also going to school to become a family nurse practitioner.  When I graduate and get my license I plan to be able to practice in a couple different states.  I want to make sure I can practice in Colorado and in Texas.  I will most likely add Utah to that list too.  So anyways... just in case any of you need a future NP that can help you get into treatments and get the right treatments.

What I did was write letters to get into a research program.  I got accepted.  They start to do things on my in January 2017.  They will do another biopsy to prove that I do have Lichen Sclerosus.  Then 2 weeks later they will do the stem cell transplant.  They will take 60ml of my blood, spin it to separate the stem cells so that they can isolate and collect the stem cells.  Then they will reinsert the stem cells down in my labia.  It is supposed to remove the scar tissue and turn it back to skin.  It is the scar tissue that closes us up.  Getting the skin to start growing as skin like it is supposed to will allow us to have our bodies back. 

That does not mean the damage of the fusing goes away.  To get that to go away, means surgery.  This also means not the average surgery.  It is  finding the best doctor to do the surgery.  I hope you all know that this is medical.  So... it is not considered cosmetic to want to have surgery to be opened back up.  This is medical.  The thing is finding the right doctor so you don't get messed up.  There are certain doctors who are qualified and have extra training in this area.  Those doctors also specialize not only in reconstruction surgery down there but also helping a woman improve sexual performance.  yes... insurances including Medicaid have to pay for this.  They are forced to pay for reconstruction of a chest due to cancer.  This is a reconstruction due to damage from an autoimmune disease.  And then there is therapy... before and after this surgery to keep you able to have sex.... so...

I am not giving you a BS wishful thinking cure that can be fixed by taking herbals.  I am telling you what I am doing to get cured.  I am also telling you that you need to do this to.  I will keep you posted through this coming year.... by my birthday May 1, I should know what the final results of the biopsy is.  They do a biopsy before and at the end of the research.  I know they have had  success with the adipose stem cells.  I am hoping that they have the same success with the PRP.  We will find out.  I want and need the cure. 

Let's get everyone cured of this horrible disease... And then we can go get our body parts back... Or go get our body parts and then go get our cure.  One way or another... this is a horrible disease  that cripples the heart of a woman... 

[warmwaters]

Hi - I'm trying understand your post a bit better. The way that I read it, you have  lichen sclerosis and you are going to try a stem cell therapy protocol to either cure it or put it in remission.

Do you also have Sjogren's?  If you do, how is this related to your Sjogren's?  Do you hope for any Sjogren's changes because of the stem cell therapy?

Thanks

[irish]

I am wondering if you got on the wrong site by mistake. Irish

[MAT51]

Lichen Sclerosis is an autoimmune disease too so maybe has both?