I have suffered for about 20 yrs. with Lichen Sclerosus of the Vulva. I have tried all treatments, best results came using liquid soap w/tea tree oil purchased at Walmart, ( Body Essence Brand), helps relieve itching and does NOT burn or irritate your worse raw breakouts, and Clorobetasol Propanate .5% cream. My symptom are worse than ever now. Found possible cure by investigating online. DR COYLE OF COYLE INSTITUTE IN PENSACOLA FL. Has done several years researching a cure. You must see his videos on web site/you tube. New treatment, core BIOPSY first to test how deep LS goes into body. Then he uses a handheld fractional laser to treat the entire area at the depth BIOPSY shows, afterwards he will use the PRP method (O-shot) made from your own plasma to promote new cells that not only treats the LS but also urinary problems and sexual dysfunctions caused from LS. New research has also shown thyroid problems, may also be a factor in causing LS. Also listen to his video about hormone balance. Please do more medical research, starting with Coyle Institute in Pensacola
FL. he has several women that has no sign of LS after last BIOPSY. He has patients coming from around the world. Costing me $975.00 only ( for both treatments,) FDA will not accept research completely so insurance will not cover it. My regular GYN recommended I get a second opinion from Dr Coyle. I've used vitamin E, Emu oil, Aloe Vera, anything on market or on computer sites. Very temporary relief, Pray for me and pray that Dr Coyle really has found a possible cure. I'll pray for each of you. Search PRP treatments and O-shot treatments for LS and laser treatments other doctors around the world are also researching LS cures.
Hi Alice, I lived with LS for over 15 years before I was diagnosed. About 2 years ago I had a lazier treatment called the Mona Lisa. That was a god send. I had to have 5 treatments because of how damaged I was but my insurance did pay for it, so it only cost me the office visit copay. I actually live a normal life these days. Sex is back to normal without pain. I did have one treatment a year after my last. I would say I'm 99% better than I ever was. I joke that back in 2016 I bought myself a new HoHo for Christmas. Lol. I would highly recommend it!!! Good luck ladies.
Hi Tracy, I just read an article about the MonaLisa Touch and found a doctor in NYC who does that procedure. It sounds promising. I'm going to investigate further.
Did you still have itching or scarring or white patches. Do you use daily moisturizer?
Thanks!
There seems to be a lot of confusing AV with LS. I think they are two different issues. Maybe I'm wrong. I have been told my lack of estrogen (which had caused AV) has now caused the LS. However, LS can be seperate from AV as young people and men get it and on other parts of their bodies.
I assume the laser used for AV is different or possibly used differently for LS. Am I wrong? Does anyone actually understand this?
beverly sorry for my ignorance. not computing today - what does AV stand for? my ancient brain goes to audio-visual grin
Nancy, Atrophic vaginitis. Also called vaginal atrophy. I think it is THE main issue for post menopausal women...no?
What do you think of this laser treatment for LS? I must have a very mild case of it because I didn't even know I had it until the gyn said I did. I am now using estradiol cream mixed with a yeast cream. Not sure why the recent addition of the yeast cream other than I was getting an burn/itch from the estradiol.
But my other problem is BV which comes for a day...is gone for 4-5 days..then returns for a day, etc. Doc says it is caused by fluctuating estrogen. I am back to using the hormone cream nightly (stopped for a week because of the burn/itch), so I don't understand the fluctuation, unless the cream is not enough. I tried women's probiotics for the BV for a month which made no difference.
Had a reaction to the steroid after a day of stomach upset & diarrhea, so stopped that for a while. Am now trying an essential oil blend for the LS made by lifeworks as an alternative. First try it burned a lot, but am using coconut oil first, then the oils. Much better. Will use it for a month or so to see if there is any improvement in LS. If not back to steroid which is a milder one than others are using.
My bedside table looks like an apothecary! But I am trying to get things under control.
Dr Coyle uses the DiVa system. Thank you for sharing I'm really nervous about the procedure. Check up on the PRP (o-shot) also it may finish the cure. How did you get your insurance to pay for treatment?
Good Luck, let us know how it goes.
LS causes AV problems. They say now most hormones do not help. You should pull up Coyle Institute on You Tube and listen to ALL his videos. Get a BIOPSY if you haven't already. Many doctors have never seen LS. And only use old standard treatments. If it is LS each day wasted with wrong treatment means more damage and scarring. Good Luck
THANK YOU LADIES,....OUR ONLY HOPE IS RESEARCH, RESEARCH, RESEARCH ON OUR PARTS AND OUR DOCTORS. PLEASE USE YOUR COMPUTERS AND RESEARCH REAL MEDICAL SITES. YOU TUBE HAS GOOD MEDICAL VIDEOS ABOUT LASER AND O-SHOT TREATMENTS FOR LS DONE BY REAL DOCTORS. ALSO TRY THE BODY ESSENCE BRAND LIQUID SOAP WITH TEA TREE OIL AT WALMART. IF THEY DON'T HAVE IT ASK FOR IT. I WROTE THE CORPORATE OFFICE WHEN THEY STOPPED SELLING IT LOCALLY. THEY NOW HAVE PROBLEMS KEEPING IT ON THE SHELF SINCE I TOLD MY DOCTOR ABOUT IT. NO BURNING AND HELPS WITH ITCHING AND SORENESS AND DRYNESS, DON'T RUB HARD AND RINSE OFF REALLY WELL. SHOWERS ONLY!
I"m not so sure I am going to do it. WIll check out reviews, etc.
HI there Alice, very interesting write up thanks for sharing. I see that you are new to our list, right? Several other women have mentioned the O-shot etc. interesting to know about the concept of discovery of how DEEP the LS goes - I hadn't heard that one before.
I don't know if you've been listening in here long enough to know about the nutritional protocol that works from the INSIDE to address the SYSTEMIC nutritional deficiencies that weaken the immune system that also need to be implemented. Of course the soothing salves are not meant to "cure" the issues, they are temporary in that regard, but they certainly have their place.
Alice, here is something that you might like to add to your arsenal: I spent several months earlier this year finding references that had verifiable medical statements behind them and wrote it all up for everyone here:
... and yes, I take every single one of these in varying amounts and intervals of time.
the science:
https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033
I pray that it works for you. Im new to ls and i know i dont like it. But i hope everything works for you
A core BIOPSY has to be done to find depth of problem my LS is severe doc says only
1.2 millimeters Inflammation 1.6 milimeters. This way the pro-fractional hand held DiVa laser can be set to the correct depth of heat. Thanks for info, good luck
Dear Alice... our energy is great - your screaming is not so great. and your assuming none of us now s**t is really not great.
Oops, that was a tired fingers typing: YOUR energy is great, Alice, and your screaming in all caps is not so great, and your assuming that none of us here KNOWs s**t is Really not so great. There are not only one way to Rome, please remember.
Wow! Please report back with your progress! This would be awesome for you and for a lot of us. Thank you for sharing.