What’s it like having Lichen Sclerosus et Atrophicus (LS)?

Surprising. I had NO IDEA that anything major was going on “down there”. I knew I tore more than what is normal, but my skin has always been fragile and the tears were always where I had stitches after my births. So I figured, 🤷🏻‍♀️ this was my life. They would heal on their own and so I ignored it.

I went in for my first pap smear in three years this summer and when my OBGYN sat down to do the test, she said “oh WOW”. 😳 ……… OH WOW?! WTH IS THAT?! Let me tell you, that is NOT what you want to hear at a routine exam. I am so lucky that I had access to a good doctor who recognized what it was and explained it (a little) to me. She showed me the changes in a mirror and I was shocked. To be completely honest, I hadn’t looked at my vulva in years. I didn’t know you were supposed to do regular check-ups and my husband and I have 3 kids, our sex life consists of quickies we can sneak in while they are watching electronics 😂. So no examining going on there 😂.

When she handed me the mirror it was like looking at another person. There was so much white scar tissue and my clitoris had already started fusing to my body. I was shocked. Literally, shocked. My brain couldn’t even process what she said next. Something about it had already progressed and unfortunately, if not treated it could turn into cancer. We needed to do a vulva biopsy to confirm. My brain was so overwhelmed and I barely knew anything about this disease.

She gave me steroids, scheduled a vulva biopsy, and sent me home. I googled the diagnosis as soon as I had a minute, and the brainpower to absorb what I was reading. What was this mysterious disease that I had no idea I had? What were the symptoms? What could I do? IS IT CANCER? So many thoughts rushed into my head all at once. Google was just as confused as I was 🤦🏻‍♀️.

Apparently, this is a “rare” disease which is why there is not much detail online, but I found a ton of women on FB groups who would disagree with that. So many women are suffering in silence not knowing that what they are experiencing is NOT NORMAL. So many of us are running around, constantly busy that it’s hard to even remember to feel our breasts for lumps regularly, much less exam our vulva for structural changes. And even more, women are misdiagnosed — recurring yeast or bacterial infections being the most common.

One thing that jumped out at me during my research was that it is also a collagen disorder. I did a few surveys in my EDS and LS groups and it doesn’t seem like there is enough correlation, but I wonder somehow if it is and us EDSers are just so used to dealing with pain that when it goes away on its own, we don’t think about it.

The steroids the doctor gave me didn't touch the damage that had already occurred, even after I paid $150 after insurance for one small tube of the Clob. I was unhappy, to say the least. I have been referred to a special vulvar clinic (yeah I didn't know those existed either) and am awaiting an appointment. Meanwhile, I am finding lots of helpful information in my Facebook groups and have found some things that help relieve my symptoms. I did get the biopsy back and it confirmed LS and ruled out cancer (phew). Just another incurable, chronic disease for me to juggle. Add it to the list right? 😂