Hi,
I am 29 and have recently been diagnosed with Lichen Sclerosus. I have had moderate success with using baking soda/borax, however last week was my first meeting with a dermatologist. He suggested to do a pulse treatment with Clobetasol, applying 3 days in a row taking the rest of the week off then repeating the following week. This is to be done for 2 months and then I am to decrease down to a maintenance dose of 1x per week. Right now things are not too bad, which is why the treatment is not super agressive... my problem is that when I started (3 days ago) almost immediately ( I noticed after the 2nd application) things went more white than they were before I started. It seems to be everywhere that I have applied the cream. I only use a pea sized amount. Has this ever happened to any of you? I will ring the dermatologist's office on Monday, but he is 3 hrs away so I wont be able to see him for a while and I am starting to worry that the clob is making it worse somehow!?
Sorry everyone, I am in a bit of a panic mode right now. Thanks in advance for anyone that takes time to reply 
I've noticed that as well. I think that it is the clob absorbing into the skin since its white. I'm not sure though. Hope it helps
Yes, i have experienced that as well. Not until I started using baking soda and later borax did it change and in the end disappear completely. As long as I keep doing the rinsing and baths with mainly borax at present, and keep my strict diet I'm doing fine.
Hi Jessica, I use the Clob in extreme insane itching and mix it with my Emuaid. The Clob although it relieves the itching, it can make the situation worse by thinning the skin. That might be what the white patches are, thin skin. It's a catch 22. I'm seeing my GYN tomorrow to get some more clarity on my situation. It ain't pretty down there.
Good luck with this dreadful skin condition.
Hi Hanny, Please tell me the brand of Borax you use and the measurements. I can't get my head around that Borax is a detergent.
Hanny,
Thanks for your reply. Do you still use the Clob as maintenance or only borax/baking soda?? And what diet are you strictly following?
Thanks for your reply Susan. It is such a frustrating condition, isn't it!
My dermatologist assured me that I dont need to worry about thinning since Lichen Sclerosus is essentially a problem with thickening. I just dont know. After the appointment I was feeling positive, but wasnt expecting things to go so white so quickly with the clob.
I am really hoping that is the case, maybe some sort of temporary hypopigmentation reaction. I will call the office tomorrow and if/when I get an answer I will post what they say on here.
I'm having a different, weird problem. Only diagnosed a month or so ago with a biopsy and Clob was prescribed. She said 2x day for 2 weeks, then once a day for 2 weeks then only once or twice a week. I've done the 2 weeks 2x a day thing, now down to once a week, but my skin is burning red down there, all over. I haven't been to my gym since last Monday to do my one-hour treadmill walk with inclines as my underwear rubbed my skin raw on the underwear line, kind of on my bottom cheeks. I don't put the clob there. I was about ready to call my gyno, but has anybody else had red, red skin? I see the white patches but they don't appear extra white.
maybe you are having a reaction to the Clob. I am applying Clob with Emuaid rather than full strength. Seems to work for me. I also go commando all the time. Love it.
Hi, i am doing what you did twice a week two weeks and now for last 3 days once a day plus baths with borax and baking soda. Itching almost gone unless i eat something sweet, diet is hard to change working on it, now though most white is gone but now have bruises or sores purple color inside my vagina and a bit on outside. Left message for doctor but haven’t heard back. Not sure how much she knows about our condition, to go to a specialist on it is 4 hrs away but thinking of doing at least one visit if they will get me in. Does anyone have bruises like that, scared the heck out of me!!
Hmmm.. was it really inflamed when you started treatment or has it gotten worse?? If it has gotten worse with pain and irritation, but not itching, it may be that the 2x a day treatment with clob was too agressive. Maybe call the dr to check?
Aside from that you could maybe try castor oil or coconut oil for some relief... or even desetin (sp?) cream for protection!
LS is very very frustrating. Just when I think things are clearing up, I wake up to a new landscape down there. I can feel things shifting. The Clob can thin the skin so that it is paper thin when used too much or too often. The skin looks thicker when it is scarring. Aren't we lucky, we can experience both. I feel like I have leprosy.
I emailed my doctor and she got me in tomorrow morning instead of waiting till end of month appt and she said she will refer me to specialist if I want to which I think I do. My doctor has only seen a few patients with our problem.
Hi Jessica. I’m a young 65 and was totally shocked to hear this doesn’t have a cure so I did what I was told and used dermovate every day on back and front. It seemed to turn into something worse instead of only having a bit of itch and dryness, I now am burnt around areas and more white than I ever noticed before. Even more swollen!! I use Dermot for cleansing and showering but have to rinse myself quite often to ease burning. I feel like stopping everything except Vaseline !! It’s been from April18. I know how frustrated you must feel!
Yes yes yes. Can’t sit for burning so don’t know whether to use the steroid gel on these raw bits or not. I’m now on every other night treatment. I have been careful to moisturise with Dermol since the start. Frustrated. My dr must not have known what the burning was as she said it might be an allergic reaction to cream!!!
Please tell me how you use the Borax and the measurements.
HI Jessica, I'm not using steroids, so I can't speak to that whitening. But maybe you've noticed I've really been on the trail of dealing with the causes. and healing from the INSIDE. Have you had time to read my article on the nutritional aspects of autoimmunity? Vitamin D3 K2, magnesium, borax/boron, zinc etc etc... Hopefully you have a health food store much closer than 3 hours? Wishing you well.
Hi Nancy,
Could you please post a link to your article, I would love to read it! I am quite interested in the nutritional aspect. I have dont know much about the vitamins, however I take a daily vit D supplement.
I tried rinsing with baking soda and applying a saturated borax solution 2x's for about 1 month. Initially it worked wonders, it was fantasic for itch but in the end I was still fusing so decided I would try the steroids to see if they could halt that.
I am so sorry to hear about what you are dealing with. It is such an awful affliction to deal with. Its all a bit frustrating because the dr made it seem like it was nothing, yet every time I look down there it seems worse than the time before. I have my fingers crossed that we will all be able to find something to make it manageable in the long term.