Vulvar Cancer: Anyone else?

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?

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.

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 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.

6 years out from my vulva cancer diagnosis and treatment. Was diagnosed with la about five years previously. Stage 3 radiation and chemotherapy and surgery. Not a lot of people who have had this life changing cancer. Still receiving biopsies every six months. This year it has spread to my anus now extra screening for that. I am offering support to anyone out there. Together we can survive and thrive

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.

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.

@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.

Are there any over the counter products that can help with LS?