Lichen Sclerosus: Any other women dealing with this disease?

Posted by Kitten92 @kitten92, May 22, 2017

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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@mary47

Yes. You can wash the area with plan water then blow dry.

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Great idea! I'll certainly consider this!

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@k3lliott

Great idea! I'll certainly consider this!

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I hope this gives you some relief.

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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.

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@alju

I just read comments from the lichen planus group and one or two ladies stressed diet is as a very important consideration for treating lichen planus. One claimed dramatic improvements after following diet that sounds like the SIBO diet, which is highly restrictive. I tried that diet a few years ago for SIBO and was hungry most of the time because 80% of the food I ate was prohibited. I spent hours every week on meal planning and shopping . Also lost 13 pounds in the first month that I didn't need to lose and still have sagging skin as a result. After a year I eventually began eating "normally" again. I am very curious if anyone who reads this has had noticeable improvements in her lichen sclerosus or planus by eliminating sugar, gluten , alcohol, etc, etc. ?

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I'm interested too, in finding out if anyone has found any dietary changes that help with their symptoms of LS...?

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@k3lliott

Thank you, that was my fear... I guess that will be something I'll never be able to do again... that's so sad!! 😔

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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,

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@somde

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,

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Loved your hug! I could almost feel it. Thank you!

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Did you see an oncologist for the LS? Or were you seeing the oncologist for something else?

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@kanaazpereira

Hello @mzleah,

Welcome to Connect. Lichen Sclerosus can be so irritating to the skin; here is some detailed information from Mayo Clinic:
http://mayocl.in/1P0u1JG
@rabbit10, @jmgm, @tropicallady1276, @julievansickle, @katzee, @fernanddia, @kam2005, @jp711, @momij have discussed it in the past, and I hope they return with more information. You can also see their discussion by clicking on this link: http://mayocl.in/2ku2E3z

@mzleah, could you tell us a bit more about your symptoms? Has your doctor prescribed any medication?

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The link provided: http://mayocl.in/2ku2E3z has been removed.

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@willows

I am glad that Lichen Sclerosis is getting some visibility as a result of patients sharing their comments and what works or doesn’t work for them. I began having LS as a teenager and any gynaecologist that I saw kept treating me for a yeast infection over the years. In my 30s it got worse and it seemed that no doctor was aware of LS, causes or treatment, not even dermatologists. Finally a smart dermatologist who headed up the largest teaching hospital in the city diagnosed me with LS. At that point I learned that LS is a dermatology condition and not an STD. I was always puzzled as to how I could have contracted an STD. This is a good reason that if a person doesn’t get answers from gynaecologists they should make an appointment with a dermatologist. As a minimum discuss the possibility of LS with your gynaecologist.
In my 30s with yet to be diagnosed LS I felt like a leper. I was in pain, I was consequently depressed and had difficulty going to work or leading any kind of a life. Stress exacerbated my condition, family didn’t understand, some suggested that I might have AIDS. This was at the beginning of the AIDS epidemic when little was known about it. My husband was supportive and that helped a lot. However my situation was not anything you would want to experience. There are many women out there with LS, who remain undiagnosed. My heart goes out to you, I know what you are going through. Take heart, control and freedom from pain is possible. Keep seeking answers and keep talking about LS, the more publicity for this condition, the more likely that physicians are aware of it and make the correct diagnosis or referrals.

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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...

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@jwbeenie

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.

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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.

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