Getting a Lichen Sclerosus diagnosis can take many years and typically comes after being misdiagnosed. As a result, no one really knows how many cases to LS there truly are. According to the Association for Lichen Sclerosus and Vulval Health (ALSVH) there are currently an estimated 1-3% of women around the world who have Lichen Sclerosus. Consequently, this can lead to frustration, disappointment, and worsening symptoms.
Lichen Sclerosus Is Hard To Diagnose
Lichen Sclerosus is hard to diagnose due to the fact there are around a dozen conditions with similar symptoms, doctors are not properly trained, many different types of clinicians see patients with LS and awareness is seriously lacking. Pediatricians have misdiagnosed Lichen Sclerosus as child abuse. Since LS is a skin disease, this is not a condition of focus for them. Gynecologists have diagnosed LS as herpes, allergies, thrush or mental conditions. Sometimes they don’t even look at a patient’s vulva instead, listening to a patient’s symptoms and prescribing medications. Lichen Sclerosus is even rarer in men which leads to less accurate diagnoses.
Misdiagnosis Makes Things Worse
Unfortunately, Clare Baumhauer’s Lichen Sclerosus diagnosis came too late. After forty years of suffering and visiting doctors over thirty times, she was told she had developed vulval cancer due to LS. She has undergone numerous surgeries, rounds of radiotherapy and complications. Thankfully Clare is currently in remission. As a result of her ordeal, she has become an activist for Lichen Sclerosus and Valvular Cancer Awareness. She is on twitter @VulvalCancerUK and her website is lsvcukawareness.weebly.com.
Birth Of A Podcast
Similarly, various doctors misdiagnosed me several times over a 5 year period. I finally got a proper diagnosis 2 years ago. Unfortunately, I didn’t get much information to go with it. After using my medication as needed I started getting outbreaks again. Needing to understand what was happening to my body, I started a podcast. Therefore each week I’m learning about Lichen Sclerosus and sharing my knowledge in hopes of creating a community.
Share your story and help grow our community so we can help each other survive this awful disease. I look forward to hearing from you.
Resources used in this episode:
https://www.vice.com/en_us/article/7xn87b/lichen-sclerosus-vulva-cancer-symptoms
https://acpinternist.org/archives/2011/06/vaginal.htm
https://www.rightdiagnosis.com/l/lichen_sclerosis/misdiag.htm
