Hi all,
I would be grateful to anyone that might have any ideas for me! I have a severe case of lichen sclerosus. I have fusing of the labia minor with the clitoris hood, and the fusing is progressing. I have intense, unbearable itch, especially in the middle of the night which makes me tired and sore when I wake up in the morning. It is making my life pretty unpleasant. My gynecologist told me I was too severe and agreed with my previous gynecologist that I need to go to UCLA for more specialized help. The itch and fusing are progressing. The typical clobetasol and estrace are not working. I have filed an appeal with my insurance company to see a lichen sclerosus specialist at UCLA who does compounding till the right steroids work. My gynecologists also suggested CO2 lazer and light therapy at UCLA. Thanks for listening. By the way, the clobetasol used to work for me a few years back when I was first diagnosed but then stopped working for me. Perhaps it was due to my going through menopause?
Lisa
HI Lisa
Have you tried changing your diet? Cutting all sugar, dairy and gluten. Worked for me and others. Also look into leaky gut syndrome which helps create autoimmune diseases and how to heal it x
Hi Lisa
I am 55 years old and I have had LS for most of my life diagnosed at 20 years old with a biopsy. After living most of my life with this this is what has worked for me. I could never use the clob because it irritated my skin severely with thining and burning and rashing. I like you would have an intense itch in the middle of the night and I would scratch all night unaware that I was scratching but by morning I would be in terrible pain because of the damage the scratching had caused. I like you would have an intense itch in the middle of the night and I would scratch all night unaware that I was scratching but by morning I would be in terrible pain because of the damage the scratching have caused. There is a thing called an itch cycle and once you get into an itch cycle it is very hard to stop but the scratching causes damage and progresses this condition. I heard a doctor say if you can stop the scratching you will stop the progression. I was determined to stop scratching but I didn’t know how I could stop scratching when I was doing it in the middle of the night unaware. So what I decided to do was I bought jammy pants with a tie on them and I tied them very tight so as to not let my hand get down and scratch. It took about one week for me to deliberately not give in to the urge to scratch. After a week of not scratching the intense desire to scratch went away and it’s like a miracle. The scratching causes the white patches that build up like calluses to protect your skin. I would highly recommend consciously deciding to never scratch and the healing will begin. After a night of scratching I would wake up in the morning so raw that my first pee was unbearable. I hope you find relief and to my first hand experience this has helped me.
Hi Lisa,
I am so sorry for your misery...we have all been there to some extent. I have read this before and totally believe in it. I would suggest that you make a saturated mixture of the Borax in water...saturate a wash cloth, warm it in the micro (if you don't like cold) and just lay the cloth on your "area"...and leave it for as long as comfortable. Repeat as often as convenient. It really makes a difference in my case at least. Hope it helps you.
Thanks so much, Lori! It is so nice to know that people (even strangers) out there care. I will tonight wear pj bottoms instead of a night gown. I will be strong and try best not to rub because sometimes I even find the need to rub in the daytime. I find that same pain you did a lot of the times when I urinate. I hope that what has worked for you works for me, but I know we're all different. Thanks again, Lori! I much appreciate your help.
Lisa
Lisa
Thanks so much, Jeri! I will try that. I appreciate your support and advice.
Lisa
Hi again, Lori...
By the way...do you still use any type of steroid to maintain and prevent a reoccurrence of LS? I heard that this is necessary to do. But maybe not for you??
Lisa
Hi Lisa,
What I use everyday is just coconut oil. I moisturize with coconut oil about 2 times a day. I find if I do not have any friction whatsoever down there ie, scratching , rubbing, any friction at all I do not have itching or irritation or tears. I remember being a teenager and the inside seam of my jeans would rub there and it would caused a lot of irritation. And the irritation would make me want to scratch and then further itching would occur because scratching causes more itching. It was a vicious cycle. Not giving into the urge to scratch the itch will help you tremendously. But you must break the itch cycle first and that will take about a week. I remember that there was no better feeling in the whole wide world then scratching down there, but the damage that it was causing was very painful. It was so pleasurable to scratch that part of me didn’t want to give that up because it felt so good while I was doing it but the damage was causing more pain than the pleasure of the scratching.
Thanks, Lori! I'm so glad I joined this forum. I'm getting great ideas. You're right about how it feels so good and then feels so horrible later on. I need to not give in to the temptation! Oh...that is difficult. Like you and somebody else previously on this thread said, after a week of no rubbing, maybe things will get better. I find myself sensitive to the coconut oil so I think I'll do what you say but with Aloe instead. Thanks again for your help! Lisa
Regarding my last message to you...oops...I said somebody else besides you mentioned to stop rubbing for a week, but just realized that the somebody else was you! 
Hi Lisa,
I have advanced fusing too... Have had LS for a long time... I find relief from Emuaid. I also bought Perrins creme complete, but the Emuaid worked better for me. I'm also doing sitz baths with Borax powder, I bought a sitz bath on Amazon and it is great, I just need to do it more than once a week, I'm also going to try the mixture of Borax powder with water to drink. There is a lot of information on this Forum on Borax, and by googling Borax powder water drink. I'm trying to reverse the fusing too. I used the clob for so many years and think it causes more problems in the long run, now it burns if I use it. The Emuaid helps the itching, but not enough to reverse fusing. That's what I'm concentrating on now and hoping the Borax will work...
Best of luck to you!!
Tracey.
I itch badly in the night luckily no itch during the day and my cure is to keep a small plastic bottle of water by your bedside and when you feel the need to scratch place this between your legs it feels cold and stops the itch. Good luck.
Hi Lisa , I have found that soaking in bicarb and lavender oil hdlps to soothe and ease the itch .
If you do not have a bidet ( as i don’t) I bought a small bowl that sits inside the lid of my toilet so useful.
Also i agree avoid if you can itching 😘
Hi Claire,
I have not tried those options. I'll look into it. Thanks so much!
Lisa
Thank you, Tracey! I have not tried your ideas. I will try them out. I am sorry that you have fusing like I do. Isn't it a bummer? Do you keep up with a positive attitude? It's depressing to me. I did not know what could help with unfusing, but you mention Borax. Thanks again!
Lisa
Thanks, Holiday girl! I will keep that in mind about the water bottle because I rubbed last night. I couldn't resist and was so bummed out this morning because I couldn't resist. Any other ideas you have to stop itch I would greatly welcome!
Lisa
Thanks so much, Susan. I was so bummed out this morning because I gave in and rubbed last night. I couldn't not rub if that makes any sense. The itch was so intense! Any other ideas you have to prevent itch I welcome!
Lisa
Hi Lori,
I am bummed out this morning because I rubbed the area last night. I was good all day until that one momet late in the night. The itch was so intense! If you have any other ideas to stop the itch I welcome it. I might try the water bottle idea by my bedside that somebody in this post mentions. She said to place it between my legs at night when I have the urge to rub.
Lisa
Hi Lisa
I know exactly what you mean about waking up and realizing that you had scratched all night. We scratch when we are asleep and do not realize we are doing it therefore it is very hard to stop. I know for me I had to find a way to not allow myself to scratch when I am sound asleep and not knowing what I’m doing. I had a time of putting on gloves on my hands at night and that actually worked for a little bit but then I found myself taking the gloves off in my sleep and scratching. So I finally came up with a great solution which was to wear jammy pants that I could tie in a knot at night to prevent me from untying them and getting my hand down there to scratch and do damage. That has worked and since I have stop scratching in the middle of the night all of my symptoms have gone I have no itching I have no white spots and I have no tearing. I am married and have not had sexual intercourse for 18 years. So I have absolutely no friction down there at all and that has kept all of my symptoms away. Tell yourself every night before you go to bed I will not scratch I will not scratch and then Tie some jammy pants up real tight. After five days of not scratching the urge will be gone and you will notice your vulva is pink and supple. Then put coconut oil on during the day before you go to bed. We have to be deliberate and not scratching because the scratching causes the damage. A doctor once told me if you can stop the scratching you stop the progression. I’m pulling for you Lisa!!
Thank you so much, Lori. I appreciate your support! I am going to buy Aloe today to use instead of the coconut oil because I am sensitive to the coconut oil. I will try to be strong! Sometimes I can't think of anything else because the itch is so overpowering.
Lisa