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Getting a Lichen Sclerosus diagnosis can feel like a very lonely experience. Even though your experience is unique, there are aspects of it that run through thousands of people's stories all over the world. It is my honor to share diagnosis stories from a few members of the Lichen Sclerosus Support Network (LSSN). Sharing these experiences is so important because it helps us know that we are not alone.
Lyna's Lichen Sclerosus Diagnosis, United States
I was diagnosed about two years ago, but have had LS for five years. I was seeing my gynecologist and my general practitioner for three years, telling them about my symptoms of intense itching, burning, and fissures. Every time I'd come into the office, though, for a checkup, my fissures would be healed and nothing would be visible. They started testing me for STDs, bacterial vaginosis, yeast infection, etc., but every time it always came back clear.
I was awake all night long scratching until I had blood under my fingernails. They seriously told me I was making this up and that I probably just needed to be on anxiety medication. I gave the anxiety meds a shot, but I was still having symptoms.
I ended up doing some Googling and that's when I came across Lichen Sclerosus Support Network. It said to seek medical attention from a dermatologist and that biopsy may be needed to be performed. After another month of scratching like a maniac, I decided to set up an appointment, and I'm so glad I did.
Thankfully, my dermatologist actually listened to me. He actually cared about what I had to say. He said it said it was clear I had lichen sclerosus. My treatment over the last two years has been using clobetasol, ointment, and CeraVe hydrating facial cleanser. Yeah, you read that right: facial cleanser. My dermatologist suggested it.
I was diagnosed with LS about two years ago. Two to three years prior to this, I would have painful intercourse, itching (but no yeast infection) and burning pain (but no UTI or STI), and weird sensations. They kind of felt like I had paper cuts all over my vulva and would flare up randomly. Every time that I went into the medical clinic, I was told that everything looked fine, that there were no lesions.
I went to a clinic specializing in STI in women’s health, where I was told no, I don’t see anything wrong with you. They said maybe it's multiple sclerosis. Maybe you have some kind of neurological issue, or you just need to de-stress. I left feeling defeated.
A couple of weeks later, I went to see a new general practitioner about another issue. I just briefly mentioned these symptoms and the frustration, confusion, and helplessness that I was feeling. She asked me if she could examine me to be sure there really was “nothing wrong.”
She took one look at me for a few seconds. Then immediately said, oh, I think you have lichen sclerosus. She asked me if my vulva had always looked like this. To be honest, I had never really looked at myself down there. The reason she asked me was that by the time I got to her table, my labia minora had already fused to my labia minora.
She gave me a brief explanation of what LS meant, gave me clobetasol, and a referral for a gynecologist to get an official “Yes, this is LS.” I felt this strange mix of horror, fear, disgust, and confusion, but also joy and relief. I had a name.
The following six to nine months post-diagnosis were full of disgust, blame, shame, confusion, and physical discomfort. I've come a long way since then, and I'm really, truly grateful to have found this podcast so that I have more resources than the medical community has provided me with.
Lisa's Lichen Sclerosus Diagnosis, Canada
At age 34, after giving birth vaginally to my second child, I started noticing something wasn't right. Finally, after approximately six months, I'd had enough and I decided to see my general practitioner (GP).
My GP took one look and said it appeared I had a yeast infection and some kind of vaginitis. He gave me a prescription of vaginal suppositories, usually used to treat bacterial vaginosis, and gave me some pills for over the next 72 hours to treat yeast. The relief was short-lived. My symptoms returned weeks later. In addition, I was dealing with issues around sex. If I attempted sex, the area around my perineum where I already tore during childbirth would tear and the pain would be excruciating.
I made an appointment with my obstetrician hoping for more answers. During the quick exam, she immediately said, “This is not normal. You're very pale down there and your vulva is disfigured. The architecture is completely shrunk. I think you have lichen sclerosus and vaginismus.” She wrote down the terms on a piece of paper and told me to look them up online. Then she also wrote me a prescription for Clobetasol and told me to apply a water droplet amount every night for two months on the area that tore.
She followed up by saying that the damage is irreversible, but we could try to stop it where it is. That's it. No follow-up appointment, no discussion of sex, no discussion of mental health, no discussion of hormones or autoimmune issues. Little did I know my life would change forever after this appointment, and I'd spend the next three years researching, joining support groups, buying various ointments and barrier creams, getting second opinions, etc. Once home from that appointment, I sat on the bathroom floor, and for the first time, I took a really good look at my vulva with a mirror.
What I saw took my breath away. I can only describe it as a flesh-eating disease. My vulva architecture was completely gone. It was like it disappeared. My labia minora was gone, shrunk, and reabsorbed into the majora. The clitoral hood was also gone, and I had scarring covering my clitoris. My perineum was totally white, scarred, and torn. I only wish I had looked a year sooner so I could have monitored changes and insisted I see specialists. The two years that followed were a blur of anxiety, stress, and pain. Dealing with lichen sclerosus is a full-time job, and it completely changed who I am as a person.
My mood changed. I didn't want to see anyone. Didn't feel joy in other areas of my life.
I can't sit cross-leg, I can't wear jeans, I can't stretch my legs in certain positions, and I have to be careful doing certain things, like getting in and out of the car, because there's no protection for my urethra or vestibule area, and my skin tears so easily through all of this. I've tried so hard to be a good mother to my two daughters. I try to be happy around them and smile, but inside I'm breaking. My husband and I have a strained relationship and I have so much guilt.
After years of suffering, I'm just starting to truly accept that this is my new normal. And I know that I'll have bad days and better days. I hope that further research is done in this area, because it seems to get lost between dermatology and gynecology, and the doctors I've seen tend to refer patients back and forth with no real answers. I'm so glad that Kathy was brave enough to start a podcast and that women are willing to share their stories and discuss this sensitive topic.
Mary, United States
I'm 37 and was diagnosed with LS in January of 2020. I started getting symptoms in March of 2019 after taking an antibiotic and I thought it was just a yeast infection. My primary care physician and gynecologist just thought I was in a bad itch-scratch cycle after a yeast infection, but eventually, my doctor ordered a biopsy. She thought she was ruling out LS because I didn't always have consistent symptoms, but it turns out that's exactly what I had. Looking back, I think there were instances earlier in my life when I had symptoms, but they were quickly treated with an ointment and I didn't think anything about it.
My symptoms are strongly associated with my menstrual cycle. It's like clockwork. Some months I'm able to get a good week between my period and ovulation, but as soon as ovulation hits, I flare up. For the most part, I'm hanging in there, but some days are really rough. It just impacts so many areas of your life and no one talks about it. I really just miss feeling like myself.
Finding Community with Lichen Sclerosus
Thank you to these incredibly brave ladies for sharing their stories! I’m so glad they found me and the Lichen Sclerosus Support Network.
A Lichen Sclerosus diagnosis can be scary. Figuring out what to do after can be confusing and defeating. Not just the physical stuff with our ointments, barrier creams, and everything else that protects our vulvas, but also mentally. We have to do everything we can to prevent sliding into the deep, dark mental illness hole. Part of that is talking with others, with people who understand you and what you’re going through. If you need somebody to talk to, please reach out to me and learn more about LSSN.
Virtual Meetup Information
We meet every other Saturday from 2–4 PM and 7–9 PM Eastern Standard Time. Take this opportunity to share your diagnosis story, what is and isn’t working for you, and ask a question to the group.
Share your experience with appointment anxiety! I have met many incredibly strong LS warriors through these meetups, and I would love for you to join our community.
Sign up at HERE for notifications and updates. I cannot wait to meet you!
These stories have been condensed from their original versions in the podcast episode, Lichen Sclerosus Diagnosis Stories: You Are Not Alone, which you can hear at the top of the page.