Listen to “183: [Personal Story] Living with Lichen Sclerosus – Tammy” on Spreaker.
Living with Lichen Sclerosus
Tammy brings her journey with Lichen sclerosus and the experiences of many other women to light in this episode. We hear everything about what it’s like to live with Lichen sclerosus, its challenges, treatment options, and how to get support.
What is Lichen Schlerosus?
Lichen sclerosus is an autoimmune condition where the body attacks itself. It is thought to be genetic. It usually occurs in the genitals, but can also affect other areas of the body, where it can cause itching and discoloration on the wrist, inner thighs and stomach. Lichen sclerosus affects young and old women.
Tammy’s history with Lichen sclerosus
Tammy started experiencing extreme itching and burning beginning in her 20s. Others may experience visual symptoms like white patches of skin. At the age of 44, she was diagnosed with Lichen sclerosus after doing a punch biopsy. She believes stress and genetics played a role in her diagnosis. Shame and discomfort made it harder for her to find the right diagnosis and thus she emphasizes the importance of finding the right doctor.
Impact on sex life
Tammy warns people against looking up their condition online. She talks about how many women go through this process with unsupportive partners. Other than sexual and mental issues that make sex difficult, pain is a big factor. It can change the way your vulva looks when the labia of both sides fuse and are sometimes absorbed entirely. The vaginal opening can shrink, causing sex to be incredibly painful. Clitoral phimosis is a condition when your clitoral hood fuses with the clitoris making it less sensitive. Other than affecting your sex life directly, it makes even performing menial tasks extremely painful.
Treatment options for lichen sclerosus
Talking about her history, Tammy says she started off using triamcinolone, a moderate steroid. Clobetasol cream and ointment is the most common treatment that’s specifically used for Lichen sclerosus. Hydrocortisone is used to soothe itching. She talks about the “Monalisa touch” used by Dr Andrew Goldstein who uses a specific machine to improve collagen production. While it may seem like a dermatological issue, many doctors don’t seem to know much about it.
Impact on Mental health
This grueling process in which women receive little support is hard on their mental health and sexual health. Tammy says the process of finding the right diagnosis takes its toll. The shame and embarrassment around Lichen Sclerosus can be helped by having a supportive partner.
Women with Lichen sclerosus are at a higher risk of getting vulvar intraepithelial neoplasia and other autoimmune conditions. Tammy found a supportive environment for women who have both Lichen sclerosus and intimacy issues in Facebook support groups. While finding support and acceptance of Lichen sclerosus is hard, it’s helpful to be surrounded by people going through the same thing on this journey.
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