Don't google lichen sclerosus

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I have hundreds of pictures of my spread pussy on my phone. Not because I was sending x-rated pics to lovers but because I am always looking at my pussy to determine if my symptoms are improving or getting worse. Is my inner labia fusing to the inside of my vulva? Am I losing my inner labia? The picture taking takes on a compulsive energy as I squint and stare at my inner labia. Was it always like this? I’ve always had tiny inner labia but it seems like it has fused a little bit. Has it fused more on one side or the other? The white skin in the creases between my inner labia and my inner vulva tells me the lichen sclerosus is still present, even though my skin has not split for years.

Googling lichen sclerosus is brutal and terrifying. I don’t recommend. That chorus of desperate voices — women panicked and grieving and terrified and desperate. Women whose most sacred and precious pussies are splitting and bleeding and fusing back together, changing the architecture of the vulva. The clitoral hood can fuse over the clitoris. The vaginal opening can fuse shut. The inner labia can fuse to the vulva, or even be “reabsorbed.” And then there is the itching, and the splitting, the skin cracking and breaking. Many women with lichen sclerosus find sex way too painful. All of us are searching for answers, for hope, in the horror show of google search results.

In 2020 my vulva started to chronically itch. I assumed I was having chronic yeast infections, but I noticed that the itchiness was more concentrated in specific places than what I’m used to with yeast infections. Then the skin started splitting. The delicate skin of my inner vulva would split open creating these little cuts. I finally got out a mirror, and a light, and my camera and started looking. I moved my inner labia and there, in the creases, I saw white skin. White like snow over the pink of my inner vulva. I knew that this was fucking weird and so I went to google. Right away I got my answer: lichen sclerosus.

Like most women with lichen sclerosus, when I went to get diagnosed I was told I simply have a yeast infection. I had to argue and demand to be seen by someone else. After dropping my pants and getting in the stirrups for three separate people, it was confirmed that I was right. I had the misfortune of developing a chronic, inflammatory condition of the skin of the vulva. A condition that is poorly understood, the cause of which is unknown, but is believed by some to be autoimmune in nature. I know that it is autoimmune — it’s the second expression of autoimmunity in my body; the first being psoriasis (also expressed through the skin).

The doctors tell me there is no cure. The doctors tell me to put the extremely intense steroid cream on my vulva every day. I put it on sometimes but nowhere near as often as they tell me to. They tell me this is a bad idea. They tell me my symptoms are in remission and they are baffled at my reported infrequent steroid use. They tell me my lichen scelerous is still active. They tell me the white skin that remains isn’t active — it’s more like scar tissue. I can see that they have no idea what they are talking about. They contradict each other and themselves. But they are all grim in their prognosis. It’s permanent, they repeat. It’s permanent.