Newly diagnosed and confused over treatment for lichen sclerosus

Hi, is that in for of ointment, oil?

I was dx in my 40’s, I’m 65 now, have been using clobetasol only as needed. The last 2 years has been flaring up more than usual, I started looking for other options, like clinical trials. I found one in Mayo Clinic in jax Fl, completed the trail, PRP they call it blindsided, but I wasn’t provided the actual prp, it’s revealed at the end of the treatment. I’m doing now the StrataMGT treatment trial in Tampa Fl, (placebo gel), also the study is blinded. I should know in a few weeks 🙏🏼. In the meantime what’s working for me at the moment is clobetasol as maintenance 2-3 times a week plus the treatment, so far so good, I think everyone reacts differently to treatments etc. stay strong 💪

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.

joei777. Wow. Good for you. Going the extra mile to try and find answers. Praying for some good news on the horizon. Faye

We can’t give up, we have to stay informed, be your own advocate! Otherwise you stay the same, no healing. I don’t trust doctors but we need them. What works for me may not work for you, however we must do our research and prepare questions and effects after treatment, keep pushing back because this is real and not many doctors know or talk about it. You are the voice of your body, only you know your body, that’s my mission 😇😎l I just got tired one day of not knowing anything but what the doctor said.

Yes. INSTEAD of ointment. Ozonated Coconut oil. It’s been very effective. I have no lesions after using it for 8 weeks.

Thank you! 😊

I am sorry that you are dealing with this. I have had Lichen Sclerosis for 30 plus years. I started using hydrocortisone which helped but never took it away. Finally found a gynecologist that prescribed vagifem inserts and Clobetasol daily until it was manageable. I also had pretty severe vaginal atrophy. I now am able to use the inserts 1 - 2 times a week (even less) and Clobetasol no more that twice per week. I also found Kindra Daily Vaginal Lotion which is truly amazing. I, very rarely have any itch and my vaginal tissue has grown back. Its so healthy. Two months ago I had surgery and was told to stop the Vagifem inserts. I have.t gone back to them yet but am faithful using the Kindra lotion. Still no itching. I am 68 years old.

@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.

CORRECTION: My continuous LS evolved into VULVAR Intraepithelial Neoplasia (NOT the "Vaginal" version I mistakenly typed; a version DOES exist as "Vaginal Intraepithelial Neoplasia " (VAIN), but that is not what I must continue to manage, & hopefully prevent from recurring or developing further into a cancerous condition).
Once I realized I'd mistyped it it was too late to use the Edit function to do so.
Be well all! & Keep up your knowledge base & the effort to be heard!