Understanding Lichen Sclerosus: Why Women Suffer and How We Can Help
Lichen sclerosus is a condition that causes significant pain, burning, itching, and scarring. It often leads to painful intercourse, decreased sensation, and increased clitoral sensitivity.
Unfortunately, it can also result in precancerous changes or cancer, known as VIN.
Despite these severe symptoms, lichen sclerosus is often underdiagnosed and misdiagnosed, leading to delayed treatment.
It can take about two and a half years for women to receive an accurate diagnosis after symptoms begin.
This delay is made worse by widespread misinformation. Many doctors and pharmacists lack sufficient knowledge about the condition, causing further confusion and suffering.
Women often do not examine their genitals closely until they feel discomfort, lacking a baseline for what is normal.
This unfamiliarity, along with the embarrassment of discussing genital issues, leads many to suffer in silence.
The condition’s impact on urination and defecation, in addition to sexual function, adds to the reluctance to seek help.
Although effective treatments exist, they are frequently used incorrectly due to misinformation, and research shows that 30 to 40% of those treated aggressively still suffer from painful sex and the need for daily medications for life.
Not only does the woman suffer physical pain, but the location of the disease can strain relationships, leading to family discord, which can affect the woman’s children.
There is also the hoovering worry of the conversion of lichen sclerosus to squamous cell carcinoma (a known side effect of the disease), which then requires vulvectomy (the labia are surgically removed) for treatment.
The disease also strikes prepubescent girls as well. This variant is especially troublesome since it can lead to the disease eating away the girl’s labia (permanently gone from the damage).
The pediatrician often misdiagnoses the symptoms of the removal of the labia by the disease as a urinary tract infection until it is too late to save the labia.
The only commonly accepted treatment for lichen sclerosus is high dose corticosteroid creams, used daily–sometimes for life.
This highlights the urgent need for (1) better treatment options and (2) education and awareness among medical professionals and patients to ensure proper diagnosis and treatment of lichen sclerosus.
Addressing these challenges can alleviate many women's suffering and improve life for both the woman and her family.
Our Mission
At the ILSVH, our mission is to advance research to find more effective treatment options (both new therapies and new combination therapies) as soon as possible and to educate the people and their doctors so that current and new therapies can be most effectively applied.
Our Mission To Educate Both Men and Women
Lichen sclerosus is a chronic skin condition that primarily affects the genital and anal areas, leading to significant discomfort and distress.
It hurts! And it bleeds!
Many individuals suffer in silence due to a lack of awareness and understanding. Spouses are confused: Is this contagious? Will it ever go away? Is our sex life forever doomed?
The children don’t know why Mother is sad and can’t go for a long walk at the park today. Why is Mother crying?
We aim to provide comprehensive information about the symptoms, causes, and available treatments to empower those affected and their loved ones to find effective relief fast.
Our Mission To Educate Doctors
Despite its prevalence, lichen sclerosus is often overlooked or misdiagnosed by healthcare professionals.
Too often, the woman will suffer through incorrect and ineffective treatments for a wrong diagnosis for years before the proper diagnosis is made.
Our goal is to equip doctors with the knowledge and tools they need to accurately identify, diagnose, and manage this condition. By fostering a deeper understanding, we can improve patient outcomes and ensure those suffering receive the care they deserve.
Our Mission To Raise Donations for Clinical Research
Finding more mainstream and effective treatment options for lichen sclerosus is crucial.
We are currently raising funds for clinical studies that aim to explore new innovative treatments and treatment combinations and to validate or improve existing methods.
Your donations will directly contribute to groundbreaking research that could transform the lives of countless individuals.
Our focus is on new treatments or treatment options that work and work fast–not sixteen more ways to make old treatments (like steroid creams) work better.
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The Institute for Lichen Sclerosus & Vulval Health was awarded non-profit status as a public charity under IRC Section 501(c)(3) and is qualified to receive tax-deductible bequests, devises, transfers, or gifts under Section 2055, 2106, or 2522. The effective date of exemption is October 19, 2015. To contribute using personal communications, call 1-888-920-5311.