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Newly diagnosed and confused over treatment for lichen sclerosus
Autoimmune Diseases | Last Active: Apr 20 10:18am | Replies (60)Comment receiving replies
2thfairy. I'm re-reading this these posts as I'm suffering so much. See my previous post here. Did your urogyn say to use coconut oil each time you urinate? Mine did. Also, are you post-menopausal? Using coconut oil causes us to wear pads so that is what I've been doing. I realize that can have a drying effect but what can we do? Seems it's the devil or the witch. I was disappointed with my urogyn last Tuesday as I went to see if there was anything he could see that might be from the surgery in January. He did not even examine me and said I might have LS and to see a dermatologist. I told him "I know I have LS." What option do I have after that visit? I make an appt with a vulva dermatologist that I've seen in the past--just to see if there is anything else that can be done. It's like were chasing an answer and it's just out of our reach. God bless us.
Replies to "2thfairy. I'm re-reading this these posts as I'm suffering so much. See my previous post here...."
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@fdixon63 - Greetings!
I haven't posted in a while, but find myself dealing with biopsy and possible excision of an enlarged neck lymph gland, so a bit off my mark, but wanted to reply to your email as I have a history of dealing with Lichen sclerosus (LS), so wanted to offer what I could for you along your journey with it.
Keep on top of it...I had a biopsy done in Dec 2023 by my gynecologist on my regular annual visit, and it turned out to be VIN (Vaginal Intraepithelial Neoplasia), and I was referred to a gynecologic oncologist who is very good, conscientious, empathetic and knowledgeable. Long story short (for now), I ended up having laser ablation of my vulva in February 2024, and suffered with the healing of it for over 7 weeks. I can elaborate on that another time, if you'd like more information.
However, what is most important at this time, I think, is to read up on Lichen sclerosus, how it is followed, managed and can turn into a precancerous condition like I am managing, successfully, so far. Along the way my oncologist has me continuing to use Clobetasol propionate 0.05% ointment. I just finished two months of Imiquimod ointment (3x/wk), with the Clobetasol the other days, to remove 2 lesions that arose since the laser ablation, and which have (thankfully!, for now) gone away.
In other words, stay on top of it, don't hesitate to find a responsible, well-informed gynecologist who will notice changes in the skin appearance, and do not be concerned - from my experience - about having a biopsy of the area done to keep up with any potential changes.
I am now 68, and have been diagnosed with it for about 40+ years. The Clobetasol is known to often cause a thinning of the skin, and vaginal atrophy, but for me that has been manageable.
I hope some of this might help. Overall, feel free to ask more Qs, and do research legitimate sites such as Mayo Clinic and Cleveland Clinic, as well as academic and professional/medical publications and journals for articles on diagnosis and management of LS, along with recognizing other developments, which can be managed with the right medical care.
Wishing you well, and letting you know there are many of us dealing with this "silent" condition. And PS - if you'd like, you could see my postings from last year (by searching (Mayo Clinic Connect's forum here via my identifier) for additional detail on what I encountered along the way.