Lichen Sclerosus cured - but it took work.

Thanks!!

 I  want to be able to have a healthy sex life.  I've probably never really been "healthy", but I wouldn't really know because I don't seek help.

BUT now I know I need to. I went to the emergency room once, this year (because i was in so much pain from infection) and the doctor have me herpes medicine!!!!!! I do NOT have herpes..as I had already told him..and as he soon found out when the results came back. I told him I have LS and he didn't know what that was... any ways......NOW I don't know where to go . 

I was molested as a child until I was six....by a girl though..even at a young age I felt like something was wrong with me 'down there' and so the psychological damage could have something to do with my problems

with LS..

with being cold all the time..

tired..

anxious..

I've been smoking since i was 17 and im now 27. I feel like that has caused me to have a poor immune system..which could make LS worse?? Sometimes i think it's my circulation and then again i DO live in Maine.. i dont know.

One more thing, I think i have Tinea Versicolor  ( Fungal Rashes that make me look like a cheetah, especially when working on the farm /in heat ) I read that this can be caused by a weakened Immune System....

trying to figure out the connections... make sense of it ..

Thanks for everything you've all shared and for reading my desperate hearts cry

-ALSO, Has anyone seen a Neuromuscular Theropist before?? for LS...

Thanks, Whitney

Can you please give me the contact of the person that you went for the herbal medicine please. I am desperately looking for something that can help my daughter.

Thanks

Nima

Fascinating discussion, I read every post - here's what I have to add: 

1) I am hypothryoid and felt this LS "creeping up" on me around age 43 when my hormones and thryoid started going sideways.  I do take a low dose of thryoid medication (Armour) and topical estrogen gel and topical progesterone creme.   I am not optimized on the thyroid medication, it seems impossible to get regulated on a dose that will help with my symptoms of being hypo without pushing myself into being adrenal stressed and then hyperthyroid and getting overdosed is misery, so I choose to stay underdosed and deal with being mildly hypothyroid but it does get much worse (LS) when I"m stressed out or if I cheat on my diet with sugar or gluten.  I now know that I've been hypothryoid since my late 20's, from bloodwork taken at the time that I've reviewed - sadly NO doctor I saw then told me I was hypo so I suffered with it for many years until finally the antibody tests showed up and half my scalp hair had fallen out.  My hair has never fully recovered but I've been able to get rid of elevated ANA and thryoid antibodies completely with concerted effort.  The LS has smoldered off/on for over a decade now - and I'm full aware that if it's active after menopause that it's well known to never go away.  I hope with the tips I found here I can help myself better with this issue or at least try different things at different times to work on it.

Thyroid disease runs rampant in my family for what it's worth.

One other thing to mention that's notable - I do recall an interval of time in my mid-30's when I had some night sweats and horrible vulvar itching (not a yeast infection but dry itchy inner lips - it would wake me up at night).  I ended up going back on birth control pills at the time and those symptoms abated, vagina normal again/night sweats gone.  So I do think LOW ESTROGEN has alot to do with this  condition~!!  What do you ladies think??

2) I recently was diagnosed with LS via my gyno, it affects one side of my perineum only, no vulvar or anal involvement "yet".  It began an an itchy burning spot some years ago and until I used antifungal shampoo on it regularly it became an open weepy area, intensely painful when I urinated and any got on it, sex was impossible and I wore alot of dresses without undies. Once I started the antifungal appraoch to treating it I was able to get it under control most of the time.  I think that area is prone to a secondary fungal infection developing when the skin is broken, not that it's simply a fungal issue at it's core - it's hormonal plain/simple. 

 I do think 100% that the LS coincided with the beginning of going into perimenopause and with the decline of my thyroid at the same time.  I also think it was made worse by pre-existing yeast issues I had (oral/gut) from years of taking oral antibiotics for acne when I was younger.  I react strongly to any type of foods that are too sugary or moldy (mushrooms, aged cheeses for instance) and I cannot be around anywhere that has a moldy smell or mold issue.  I do take probiotics on a regular basis which help ALOT.  AT this point I've been finally able to really ratchet down my issue with candida by going through a heavy metal detox and as well taking natural treatment to get rid of 2 parasites that were found via a stool test that I insisted on having via my homeopath.  One parasite is definitely gone and the other I just re-tested again to see if I was 100% successful in getting rid of (you have to test twice before being sure it's gone but I"m pretty sure it's gone since my candida is still gone).  I refused to take antibiotics for the parasites and am a living testament that they can be killed via natural means.  It just takes longer to do and most docs don't take time to deal with a long term treatment.  I used Mastic Gum in high dose and emulsified oregano oil as part of my year's regime for the parasite killing - with other things rotated in a well. 

3) I've been self-treating the LS, with long periods of successful remission, using an anti-fungal shampoo at every bath or shower and also find that if I use Estriol creme vaginally that it helps as well.    But it always comes back, never really goes away even when it appear it is gone for good. I just put the dots together over time that the Estriol creme does help but does not cure.

4) I'm now age 55 and have not had a period for 9 months now, so am nearing where techinally I'll be in menopause.  Yes, menopause came late for me and it was a really rocky road - and continues to be. 

5) At the same time that LS appeared I also began getting little round non-itchy red patches on my skin, randomly, on my legs/back of arms mainly but also some on places like under my breasts and on tummy/buttocks.  This is not dry skin but rather scaly crinkly skin that goes away over time but again returns. I"ve seen several dermatologists about it and they have all scratched their heads and offer me topicals or offer to burn/freeze them off - but offer no diagnosis even with taking scrapings and a couple of biopsies.  It's definitely not psoriasis .  I think this is also LS as it does/can appear elsewhere on the body.  I do find that going gluten free did make a dent in their appearing in droves, but if I eat anything like sugar or daily that it promotes them.  I tried using antifungal cream on them and it does not control them.  It's the best it's been in several years now and this summer I'll be able to wear short sleeves for the first time in many years, personally taking the thryoid hormones has helped the most.  I've had a few derms tell me that once the lesions appear that they'll never "leave" but this has proven incorrect, I've found if I leave them along and keep them moisturized with bland creme they'll fade away/disappear in about 6 weeks.  If I pick at them AT ALL then they'll stay for literally a year or more, get very angry and leave a dark mark that takes another year or more to fade away.  They are not fun to have.

6) I've never been hands on sexually abused but I have been told I am a beautiful woman and have also been in the public eye with my work thus have had a lifetime of unwanted sexual attention/advances and from men that I trusted and of course also from total strangers - so I don't discount the sexual abuse theory at all for women to have developed this issue.  I think mental stress is at the core of so much of our health malfunctioning along with environmental poisons. Women work as hard as men these days, not like yesteryear when women stayed at home with the kids - life is hard on us now,  especially for those of us with low thryoid, as LS can really get a hold of us whe our immune system is low.  I also take iodine and have taken it for years, and I did go as far as to test for what's called a NIS-Symporter defect which is the mechanism by which your body is able to utilize iodine.  My NIS system works great and my iodine levels when initally were at 88% when tested, far from deficient - but I still take it regardless but not in excess, to give thyroid support. I've gone through literally a fortune of testing and paying for doctor visits, only to still be where I am from where I started but at least now aware of my individual intoleraces and to the fact that if you have a thyroid issue and auto-immunity then you can plan on having many other issues as well and that a bad diet is not something to monkey around with.  The LS it seems is controllable at least, but with much effort.  So let's keep this thread alive, I"m sure it's helping alot of women - it sure gave me some good ideas~!

I am copying your information, so I that I can bring up some of those matters with my dermatologist. Thank you a whole bunch. Keep upo the good work.

thank you to you for all this hope...... and everybody with such a great information about this..i just have been diagnosed and i am freaking out..i cant even move from bed ...seems my inflamation is under control and i am having my first month of clobetasol once a day...i only have spots around my clit and my anus, but i am experiencing pain in my labia, redness etc....not fun....i am totally aware about my diet and i eat for years paleo before this....so my diet is good...i dont even drink cofee or alcohool ...i have been told by my doctor that is an inmune response...she did a blood test and she said all was good, my thyroids too...its true that i have been under anxiety for the last 3 years after movin to nyc ...and i had alopecia aerata and i also have 3 spots related in my upper back....she said all is the same..

My doctor did not do a byopsy in my vulvar area because she did before in my back so she told me was the same thing...

I reall wonder about what root canals has to do with this because my alopecia was right after i did one...and all started right after.

She also told me that eventually this burns out itself after a while...

Gonna try all is mentioned here....its really a good help to have bben found this forum...thank you everybody.

I have been going to a naturopath as well and she thinks she can help me.  I am willing to try but am not very optimistic.

Also wanted to mention that my symptoms began not long after a radical hysterectomy (5 years ago) after which I developed sepsis.  I was bombarded with antibiotics at that time.  I have a strong suspicion that this is what started it all for me and my Naturopath believes this may be the case as well.  Anyone else have this experience with antiobiotics?  I seldom had taken these in my life before (no need). 

Really appreciate this site as this topic is not exactly one you bring up at the dinner table (or anywhere else for that matter).  As someone else below mentioned:  it is wonderful if you have a loving and understanding spouse when you are faced with this.  Can't imagine what it would be like if I didn't have his support and kindness.  Hope that others are as lucky.

I was wondering whether