Lichen sclerosus

Lichen sclerosis sucks. I'm sorry you're dealing with this. I was diagnosed with LS in 2011 and was also prescribed a steroid cream. I've been in remission since 2012. I don't know if it was using the cream as directed or something else that put me into remission. I didn't do anything else intentionally to treat it other than attempt to reduce my stress. I hope the cream works for you!

There is a yahoo group (https://groups.yahoo.com/neo/groups/LichenSclerosis/info) that has loads of information and alternative treatment options. 

I was diagnosed while I was pregnant with my first baby. It was very scary but after delivery and application of the prescribed creams, it went away. So in my case, I did get better without having to do anything else.

I did find that using a certain brand of sanitary pads made the lichen sclerosis flare up. You can get info on this from the yahoo group.

good luck. 

Oh boy, I am sorry.  This is a terrible diagnosis to have.  But there is hope!  Have you heard of the Autoimmune Paleo diet (AIP)?  It has a long track record of helping to heal autoimmune illness.  Not cure.  But reverse and heal.  Here is a podcast from my favorite AIP website:  https://www.phoenixhelix.com/2018/01/05/episode-87-healing-stories-5/  One of the people she interviews has Lichen sclerosus.  Hope you can listen to this podcast and poke around her website.  AIP isn't an easy diet to follow, but it helps to heal damage.  There are lots of resources on the internet - recipes, support etc.  I've been doing it for 4 years now.  Good luck!

Hi.  Sorry for your diagnosis but there is certainly hope.  It is considered autoimmune in some cases and the autoimmune protocol has been extremely helpful for two of my clients who had this condition.  You can see what it looks like here: https://www.thepaleomom.com/start-here/the-autoimmune-protocol/ . 

I was diagnosed a few years ago and have been hoping for some sort of support group or others to talk to about it. I declined starting Clob but don't feel like I have enough peer-reviewed medical information or casual anecdotal information to know if I am making a reasonable decision knowing the cancer risk.

I hope I can connect with other with LS. .

Sending you compassion and hope for a great medical team (westernized, alternative, or other) that can support you and your healing. I read about this in the NYtimes earlier this year, it brought awareness to me, of an issue I hadn't known existed: https://www.nytimes.com/2019/05/12/well/live/a-little-known-skin-disease-that-can-disrupt-peoples-sex-lives.html

I am so sorry, this is no fun! When I was diagnosed after my biopsy results came back, the doctor who called me very unhelpfully said “I have good news! You don’t have cancer!” I didn’t even know they were looking for cancer. I am nearly completely symptom free 15 years later, and it is hard to say what worked, but I did acupuncture, and generally just tried to take better care of myself in terms of getting enough sleep etc. I also then went through horrible infertility unrelated to the diagnosis, complete with many rounds of hormone therapy, so a lot happened, and I cannot say what worked. Now, I can tell that the very minor flare ups I have are stress related, and the steroid cream works very quickly. I am sorry you are going through this and wish you well!

 I was biopsied and diagnosed.  The obgyn put me on what i understood to be a lifetime regimen (I'm going to look into whether there is really true remission) of a dab of clobetizole twice a day for a month alternating with a dab of estrogen cream twice a day for a month.  I've been doing this for years and have had no issues.  Compared to many medical conditions this one had an easy solution.  For me it was not a big deal.