Anything out there that works other than steriods
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How do I find a doctor in my area who has experience treating lichen sclerosus? My OBGYN did a biopsy and diagnosed me with LS about a year ago. She is very nice, but does not know a lot about treatment. My dermatologist does not seem to know much about treating LS, and didn't examine me. He told me that it was bad to use clobetasol and said to switch to Elidel, which caused immediate irritation. I live in Honolulu. Thank you.
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@honolulukk I see a gynecologist who sees many patients with lichen sclerosis. I was prescribed clobetasol. There has been improvement. It cannot be left untreated. I had also seen a dermatologist who also deals with women who have l.s. Same advice.
@honolulukk I sometimes get irritation also but persist in using it. The gynecologist said can be applied as little as 2 times a week, although I do now use it more often than that. You will find that if you leave this condition untreated, it will get worse.
After showers or when I am dry, I smooth on some Baby Aquaphor. Find it in the baby isle. It helps prevent chaffing. Good for your lips too
@honolulukk What an uncomfortable, annoying problem you have. You might think about returning to your OBGYN, who you like, and ask about clobetasol. Also see if she will ask others OBGYNs if they have heard of LS and how they might treat it. You must have had to make a lot of changes in your routine, especially with the heat and humidity. Let us know what your doctor says; it could be a big help to others!
I was diagnosed with Lichen Sclerosis by biopsy about 15 yrs ago. I have used Clobetasol for several years. I use it twice a week for maintenance. If I have a bad flare I use it daily until things start settling down. I used Flucininoide steroid ointment in the past but it doesn’t work well enough for me. I’m currently having one of the worst flares I’ve ever had. It is affecting my Urethra and causing moderate pain. I thought it was a bladder infection so went to the doctor last week but urine test was negative. I have been mixing Clobetasal with 5% Lidocaine cream and applying it. I will be going to the doctor this week to see if there is anything else I can
Hi. I was diagnosed by biopsy in September. I started a rx of clobetasol CREAM and then immediately experienced searing/ burning discomfort- so much that I could not sleep. My gyn seemed confused by my worsening pain and sent me to a dermatologist. She immediately identified that the Cream formulation was my issue- she prescribed clobetasol OINTMENT and lidocaine ointment. Using the ointments made a difference for me in just 24 hours.
I am not sure if the cream rx was an oversight By my gyn or my body’s reaction. The dermatologist insisted that the ointment formulation was the better rx- and for me that was the case. I am now using the clobetasol ointment 2-3/week and have not needed the lidocaine in a few weeks. Good luck- this is a frustrating medical condition.
I am so sorry to hear of your problem. I have it too. Was diagnosed 2 years ago. I did the same thing you did. It was in July and the grandkids were here for outdoor adventures when it hit me. I thought it was a bad UTI so I stopped in that the local drugstore clinic for a test and a quick fix. Wrong. No UTI. Long story short, I saw my gyn. She diagnosed it by saying, "I'm sorry to tell you that you have another autoimmune disease called Lichen Sclerosis." Prescribed the Clobetasol and that has held me. I use a dab when I feel a little warning. I'm glad to hear that Aquaphor can help too. It is very important to take care of yourself in this regard and finding the right doctor who is knowledgeable about LS and other autoimmune diseases. Since this this an AI disease, there is a pretty strong chance you may have other AI diseases to develop. Best wishes.
@tamarillo2 I have found both the ointment and the cream cause irritation and alternate between the two For years, I foolishly left the l.s. untreated. Terrible mistake, (sometimes, you just have to listen to the advice you are given). And, as I mentioned in an earlier post, it only needs to be used twice a week. I did say to the gynecologist should I keep using it even if its irritating. An emphatic "yes". Actually find the cream/ointment not quite as troublesome.
Another tip that I found to be quite helpful: Instead of soap of any kind (which I found to contribute to dryness), I use Aqueous Cream when I shower. You need to read the list of ingredients before you use it to make sure you are not allergic to any of them. I have a very long list of allergies myself, but I have done well with this soap alternative. It is inexpensive and a jar lasts a long time. It is fragrance free and lanolin free and I keep an extra jar on hand. I also use it for general relief of dry skin. Perhaps it would help you too!
The Dermatologist has been the most helpful for me. The Gynecologist prescription was a topical hormone which was a net neutral. Since we only comprise 1% of the population it is not surprising that it takes us so long to find the physician that knows and cares about L S. My effective treatment is also Clobetazol Ointment.
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