Lichen Sclerosus: Any other women dealing with this disease?
Is anyone out there dealing with this disease? I am currently using a compound ointment that my oncologist prescribed but I'm looking for possible lazer treatments or anything else that might now be available.
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Great idea! I'll certainly consider this!
I hope this gives you some relief.
Hi I was just diagnosed. Ive read other posts and wonder if I should seek a 2nd opinion? I saw a Arnp. Should I see doc too? She said she could tell I had it without doing biopsy. Also I had something else on my inner labia I had to have biopsied to check for cancer. Sorta freaked out and wonder if I need more specialist care. I was prescribed the clobetasol with estrogen creme. My mom had estrogen sensitive breast cancer and just died from it but the nurse said it's ok in a small amount that I'm using? Is it? She also recommended Genetic testing as well so...I really liked the nurse but feel that this is serious stuff. I'm really unsure of what to do and I wanna make sure I'm getting all the tests I need.
I'm interested too, in finding out if anyone has found any dietary changes that help with their symptoms of LS...?
Very sad but do no get discouraged. I am sure you will find something enjoyable for yourself! Good luck, a
A prayer going up for you,
Loved your hug! I could almost feel it. Thank you!
Did you see an oncologist for the LS? Or were you seeing the oncologist for something else?
The link provided: http://mayocl.in/2ku2E3z has been removed.
Hi @willows - I just had (on 2/8/24) laser ablation surgery (using 'plasmajet technology') after a biopsy of 2 areas in January 2024 showed I have VIN II/III (vulvar intraepithelial neoplasia), a pre-cancerous condition,
I was diagnosed with Lichen sclerosus (LS) about 40 years ago, and have been following it ever since, using Chlobetasol propionate 0.05% (in the past few years, as it was recommended over the previous testosterone cream).
I am scared/concerned, but at least feel better that I am being seen by a gynecologic oncologist referred by my also excellent OB/GYN in the UPMC (Pittsburgh PA) system.
I am doing MUCH reading on it, only on academic/professional/governmental (NIH) sites, as much as I can access them as I am not a medical professional. But here on MayoClinicConnect is where I have found - thank goodness! (for a lot of my health concerns!) MUCH helpful, respectful and well-moderated information.
If I can provide more info - from my own experience - please let me know. I am awaiting the results of the 4 ("punch") biopsies taken before the Dr. applied the laser ablation in the operating room last Thursday.
Fingers crossed! But even then, this latest iteration of the LS journey to pre-cancerous VIN must be followed every 6 months for 5 years, with at first 2 check-ins post-surgery - one in one week (with the Dr's PA) and one in 2 weeks after (with the GynOnc MD herself).
Even though it's a 100-mile roundtrip, since I've moved out of the immediate Pittsburgh area, it's worth it, as long as the travel experience is safe.
Best wishes for you...
If you haven't already, please DO see a Gynecologic Oncologist (doctor).
I have posted a few posts later below about my recent surgery to address pre-cancerous VIN.
I hope that also may be of some help. Let me know if I can provide further information - from my experience and reading.
Best wishes.