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Newly diagnosed and confused over treatment for lichen sclerosus
Autoimmune Diseases | Last Active: Aug 9 10:57am | Replies (114)Comment receiving replies
@sujett you can try contacting one of the following organizations:
NORD, National Organization for Rare Diseases https://rarediseases.org/
Or GARD, Genetic and Rare Diseases. https://rareddiseases.info.nih.gov/
The 2 organizations keep a list of physicians whose speciality is rare diseases. They may or may not have names in your area, but you could always drive!
Because of all the changes in Washington, DC., the organizations may not be fully staffed.
Will you contact one of the organizations and let me know what you find out?
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@sujett - Just jumping in here, and have posted about my LS / VIN II/III (="this condition") journey here on Mayo Clinic Connect (if you'd want to do a search on this site), but I have a very good gynecologic oncologist who is seeing me usually every 2 - 3 months for the lesions that arise still from this condition.
Having found a lesion on our last visit ~1 month ago, I am back on Imiquimod 3x/week, with Clobetasol propionate 0.05% ointment on the other days til I see her end of Sept. If the lesion is not gone, will have to undergo my second excision, and it is near the urethra, closer than any have ever been, so I'm concerned about it messing with the urine flow when I urinate.
BUT, I have not had issues with the Clobetasol. As you may see in my previous posts, we did initially find 3 lesions and I had to undergo laser ablation of the vulva in Feb. 2024. That was excruciating, unrelenting pain for 7 weeks. Nothing except vasoline, a bit, provided relief, and urination was excruciating. So, I hope you may be able to find a good gynecologic oncologist who can monitor your condition and keep it under control.
Let me know if I can help by sharing any other experience with this condition. I'd been periodically treating LS with an ointment, per my gynecologists' advice (had several different ones as I've lived all over the country) since it was diagnosed in my early 20s, and now 40+ years later it has turned into this VIN (Vulvar Intraepithelial Neoplasis) II/III precancerous condition.
I certainly hope of course that it doesn't evolve further.
Best wishes, and do look into any gynecologic (pre)cancer reading you can do through the NIH, Lichen Sclerosus nonprofits, etc.