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Just told about a year ago that I have possible lichen sclerosus
I was recently told I have probable LS. I had rectal cancer diagnosis that was treated as anal cancer in November 2019. Chemo and radiation therapy has gotten me cancer free now. The radiation side effects were severe burns that cleared up after about 6 weeks and scarring of my vagina, atrophy in that area, and scarring of my cervix. After treatments for the cancer, I did have itching in the perianal area and thin skin caused bleeding there as well. My first pap smear after all the cancer treatments wasn't until mid 2024, and that is when is was discovered that my cervix was so scarred I needed to go to a gynecologist to get an acceptable pap smear. It was at the gynocology appointment that I brought up my continued itching in the perineum area and newly started itching of my genital area. I was diagnosed with lichen sclerosus by its appearance, and was prescribed colbetasol for the affected area. This cleared up my vulva itching, and helped with the area between my vagina and anus that was much improved but not gone. I have been getting sores that will bleed at times and less intense itching now. At my recent gynocology visit, my doctor did a much biopsy of the perineal area in order to confirm LS, so I am waiting on that. Needed another pap test as last year's test was positive for hpv but not 16 or 18. There are other strains that are high risk but not the highest that 16 and 18 are. Hopefully the pap comes back clean meaning my body cleared it on its own. The cancer I has was hpv related, so my gynecologist decided to do the biopsy to have an accurate diagnosis of my condition and rule out any concerns that it could be cancer. I never dreamed in a million years that I'd be dealing with all these problems in my private area. Its been frustrating, and I'm happy to see there's a support group here for this condition. This is my first post as I just joined the group, and I am looking forward to reading and learning from what you all have been through and posted. Its a hard subject to discuss with friends and family that haven't had these problems.
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I also wonder if my LS is connected to my January of this year diagnosis of Hashimoto thyroiditis. It seems autioimmune diseases can be connected, and I'm just learning about all of thos. Its a lot to take in at age 57. I had never had all these issues until my cancer diagnosis.
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2 ReactionsI seem to be collecting autoimmune conditions as well. Multiple autoimmune syndrome is mentioned on the NIH website several times, if you want to read studies into it. Seeing an endo regularly for my thyroid to keep it under control, using Lisepten for my LS, and staying on top of others with my PC is working. Just ask questions about everything and read the side effects. Please don't worry about it. It is what it is, and taking care of your health first will help everything else sort itself out. I eat healthy and learn to say no whenever I'm offered something unhealthy. People do seem to respect my healthy decisions, and I hope it inspires them also to exercise, eat properly, and maintain a positive (and honest) outlook on life.
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2 ReactionsIf you have 1 autoimmune disease you are very likely to have/develop more
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2 ReactionsThank you for those words of encouragement. I did find out yesterday that my biopsy is positive for LS, and I'm happy to get a definitive diagnosis. Especially happy to hear that persistent lesion is not cancer or precancer. I appreciate this chat group because LS is so new to me. I hadn't ever heard of it until last year in August. I look forward to the helpful insights from this chat.
It's funny how I had been so healthy until my cancer in 2019, and now it seems like it's one thing right after another. I tell you all that the devil isn't going to steal my joy. I'm just going to keep praising the Lord.
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3 ReactionsI surely do hope that I don't have any other autoimmune issues crop up. Hashimoto thyroiditis, and I read that LS might possibly be a type of autoimmune issue. Does anyone have other autoimmune diseases crop up?
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1 ReactionRelief for the cracking may be found by using ozonated coconut oil on both areas daily. It works for me. I’m sorry you’ve had this diagnosis in addition to all you’ve gone through. You’ll find hundreds of us here with LS. ✝️💜
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1 ReactionI really admire you posting for the first time, so clear and honest. I'm glad you have a definitive diagnosis. I had Stage II salivary cancer with surgery and radiation. At the time I had my only pap that came back requiring a recheck. While I had my surgery at a major medical center, a resident told me that cancer had nothing to do with the immune system!! This was 30 years ago, but I was an RN and knew he wasn't right.
Our immune and autoimmune responses are tied together. In the past 30 years I have acquired 5 autoimmune diagnoses. The most recent was in June when I started treatment for LS. Yes it is considered autoimmune. That's why it can be treated but you can have flares and do have it for life.
I have found that it takes me a short time to learn to cope with new illness. But the emotional toll takes me longer. LS is not anything I can talk about with others (private), so I feel that joining supportive groups like this is helping. I have rheumatoid arthritis, Hashimoto's (30 years), Sjogren's Syndrome(30 yrs) , Undifferentiated Connective Tissue Disease, on the spectrum of Ehlers Danlos (both 30 years) Now LS.
And I have a rich inner life, long stable marriage. I'm a poet and make jewelry. These are the ways that I find joy (following baseball too!).
I hope that you are finding ways to enjoy life even with autoimmune illness. I also honor the path you've had as a cancer survivor!
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