Vulvar Cancer: Anyone else?

I have read recently from several sources that Hashimoto’s and vitiligo (both autoimmune conditions) may lead to LS which can then lead to vulvar cancer. Interesting to know if anyone out there has found that link.

@tilli - This may help if you haven't yet heard of it - just for when urinating: a squeeze bottle (I got 2 on Amazon, but they were a bit bigger than what the hospital gave me after the laser ablation)...

I used the kind that have the pull-up top so that you can easily open and close it and carry it with you if away from home - filled with water. It greatly eased the searing pain of urinating, though nothing for me entirely removed the pain. I endured that for 7 weeks after my laser ablation.

Note: I have not yet been diagnosed with a cancerous condition, just the VIN precancerous condition, which the laser ablation and excisions have been addressing and hoping to minimize long-term. But we have to stay on top of it for the rest of my life, as I understand is typical.

Take care.

@andwho - Clobetasol is an opaque ointment by prescription only as I understand it. Each tube lasts a long time for me.

Also, as I understand it, LS is a lifelong condition which flares at times, especially under stressful conditions.

In the recent past I've found that UK (United Kingdom, England) reputable medical sites are more on top of LS and its treatment than some US sites, though that may have changed in recent years as support groups have rallied for advances.

Here're a few search results that are worth checking out further, including a UK site:
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Lichen Sclerosus: Causes, Symptoms, Diagnosis & ...

Cleveland Clinic
https://my.clevelandclinic.org › health › diseases › 165...
Lichen sclerosus is a chronic inflammatory condition that affects skin on your genitals. Healthcare providers don't understand what causes lichen sclerosus.
Lichen sclerosus

nhs.uk
https://www.nhs.uk › conditions › lichen-sclerosus
Lichen sclerosus is a skin condition that causes itchy white patches, most commonly on the genitals. There's no cure, but treatment can help relieve the ...
Lichen Sclerosus

Cedars-Sinai
https://www.cedars-sinai.org › diseases-and-conditions
Lichen sclerosus is a long-term skin condition that mostly affects the genital and anal areas. It causes your affected skin to become thin, white, and wrinkly.
Lichen Sclerosus—Presentation, Diagnosis and ...
National Institutes of Health (NIH) | (.gov)
https://pmc.ncbi.nlm.nih.gov › articles › PMC4904529
by G Kirtschig · 2016 · Cited by 265 — Lichen sclerosus is a chronic inflammatory skin disease. It is thought to be underdiagnosed and undertreated.
Lichen Sclerosus

Yale Medicine
https://www.yalemedicine.org › conditions › lichen-scle...
Lichen sclerosus is a rare skin disease that causes itchy and painful patches of thin, white, wrinkled-looking skin. Learn about symptoms and treatment.
Genital lichen sclerosus et atrophicus in females: An update
National Institutes of Health (NIH) | (.gov)
https://pmc.ncbi.nlm.nih.gov › articles › PMC6532494
by Y Marfatia · 2019 · Cited by 67 — Lichen sclerosus et atrophicus is an acquired chronic inflammatory dermatosis commonly affecting the vulvar and perianal regions.
Lichen Sclerosus - Symptoms, Causes, Treatment | NORD

National Organization for Rare Disorders
https://rarediseases.org › Rare Diseases
Dec 11, 2024 — Lichen sclerosus (LS) is a chronic inflammatory skin disorder that most commonly affects females before puberty or after menopause.

Thank you for sharing. You’ve been thru a lot for a lot of years!! Is LS something that comes & goes? Flare ups?
Can I get clobetasol with out a script?

Clobetasol propionate 0.05%?

I have lichen sclerosus & have had laser ablation, then excision of a smaller area, now trying to address current lesions with Imiquimod ("Aldara") cream per my gynecologic Oncologist...which, if it doesn't reduce/ remove them means further excision.

There is a lichen sclerosus support group online that has Zoom calls every Saturday.

As I've researched it on my own, (& having been diagnosed with LS ~45 years ago), LS & VIN II/III (Vaginal Intraepithelial Neoplasia) - the precancerous condition I've been diagnosed with - are more common than we as patients know or are educated to watch for.

Fortunately I've had good (well-informed) gynecologists along the way.

It's still strange to me that the cause remains unknown.

Let me know if I might be of any further assistance.

Best wishes.

I understand your frustration. I have good days and bad. I can have burning and itching with pain throughout however, I have found something that works. We have a Toto washlette that sprays water over the area but that doesn’t always help. Urine can be pretty painful. I purchased through Amazon cleansing wipes called Theraworx that have a low ph factor and are very soothing. They are not cheap but I notice a big difference when I use them. I showed my radiologist and she has seen them used in the hospital. Toilet paper has chemicals that can burn the vulva. My doctor prescribed both Estradiol Vaginal cream and Premarin which I use daily after showering. In the morning and evening I slather on Triamcinolone Acetinide which is a cortisone cream base of light mineral oil and white petrolatum. This acts as a barrier of sorts. The above requires a prescription so I recommend discussing with your doctor. I have lichen schloros which lead to the vulvar cancer and I have used cortisone for years however, the estrogen creams are new to me. I have read that most women would benefit from using them. I have also used lidocaine which also helps but find I don’t need it as much.

I hope that you can find some relief. Vulvar cancer is rarity and I believe doctor’s don’t have a lot of information on how to treat it. It is important for us to share with others things that help improve our life. I wasn’t prepared to have these late effects from chemo/radiation. I am adjusting to it being my new norm but thankful that I am alive to do so. I hope that my suggestions can be a help to you.

Thank you for responding!
You have been thru a lot but you give me hope! Thank you.
Can you tell me if you use anything to help soothe your skin or any suggestions ? I’ve tried a lot but nothing makes me feel like I did prior to vulvar cancer. I’m thinking I never will!
Just want to feel some sort of normalcy!

Never heard of this but will look into it. What type of cancer do you have. Mine was vulvar.

I am investigating the Press Pulse therapy now - shrink tumors via control of glucose and glutamie. Dr Thomas Seyfried on You Tube. He refers to chemo as "brutal." He also uses it in low dosages to help the body clean up after tumor shrinkage with the press pulse therapy. I'm not a disciple yet - just curious and investigating.

Thanks for your response.
I’ve tried aquaphor, hydrocortisone, vulvar balm, barrier cream, vagisil, silvadene & lidocaine. Some work short term. I have lots of flare ups of itchiness, soreness, inflammation. Don’t know what else to try!