Written by: Jaimie Beveridge 

Lichen Sclerosus (LS) is a skin disease, usually occurring in the anogenital (i.e., anus and genitals) area. It appears differently across women, though commonly the skin becomes thin and wrinkled with patches of white discoloration. LS can cause tears and scarring of the skin, leading many women to feel persistent itching and soreness. It can also make sex very painful for women, as the fusion of skin can lead to a narrowing of the vaginal opening or a fusion of the labia. To better understand what having LS is like, I talked to a woman about her firsthand experience with LS:


 

Q. When did you first notice the symptoms? What did it feel like?

A. I started noticing a problem about a decade ago. I never noticed the “typical” symptom of LS, like itching. I just had pain from sex. It was always the sort of pain where I figured that my partner was “too big” for me. It becomes very easy to put the fault on yourself and your own body, rather than simply accepting that pain during sex is not normal. The pain that I had occurred during intercourse and felt like tearing at the vaginal opening. In fact, many times there was tearing and I would have spots of blood. This led me to believe that I just wasn’t compatible with my partner.

 Q. What was your experience with getting it diagnosed?

A. I didn’t get a diagnosis for years. All I knew was that sex was painful, and it never occurred to me that there was a problem that could be fixed. I wish that I had known that pain during sex is simply not normal. I had gone for annual gynecological exams and in my case, my doctors never picked up on anything physically looking problematic. After many years, I went to a different gynecologist, and in my very first appointment with her, she noticed patches of skin that had whitened and fused. Had it not been for her, I probably would not have realized until much later than I had LS and that it was contributing to sex being painful for me.

Q. What does it feel like for you now? Are you receiving treatment?

A. My LS is under control now that I am getting it treated. Relative to many, I didn’t have a severe case of LS. You can’t reverse the skin fusing that has already occurred, but there are treatments to slow or halt it. I take Clobetasol (a topical steroid ointment), which I apply to the affected skin and surrounding area to stop the progression of LS. I additionally use other topical medications to keep the skin moisturized and supple.


This is one woman’s unique experience. LS can present very differently, with women experiencing extreme symptoms and others presenting no symptoms at all. If you wish to learn more about Lichen Sclerosus, check out the informative websites below or talk to your doctor.

Sources:

Brauer, M., van Lunsen, R., Burger, M. and Laan, E. (2015). Motives for vulvar surgery of women with Lichen Sclerosus. Journal of Sexual Medicine. doi: 10.1111/jsm.13052

Powell, J. J. & Wojnarowska, F. (1999). Lichen Sclerosus. Lancet, 383, 1777-1783

Image credit: cordon.alejandro

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