Gyno Girl Presents: Sex, Drugs & Hormones Lichen Sclerosis: A Patient's Story from Misdiagnosis to Treatment Success
One of my brave patients shares her story with lichen sclerosis from being dismissed and told it was "all in her head" to finding proper treatment and relief.
I'll never forget the day Jess walked into my office. By the time she found me, she'd already been dismissed by multiple doctors including specialists at what was supposed to be one of Chicago's premier women's health centers. They told her the severe pain and skin changes she was experiencing were "all in her head." Two different physicians suggested she needed a therapist, not medical treatment. Her depression history was weaponized against her, used as proof that she was just being hysterical.
But Jess wasn't hysterical. She had advanced lichen sclerosis, and her vulvar skin was literally fusing together. Had she not found proper treatment, she would never have been able to have penetrative sex again. Even worse, without treatment, her risk of vulvar cancer would have climbed from 1% to 3-5%. Yet nobody had explained any of this to her. She'd been handed a tube of clobetasol and essentially told to figure it out herself which she did, on YouTube, learning the proper application technique that her doctors never bothered to teach her.
In this episode, Jess bravely shares her journey living with lichen sclerosis—from the devastating experience of being gaslit by female physicians to finding relief through injectable steroids and surgical lysis of adhesions. We talk about how her symptoms worsened when she entered menopause in her mid-40s (common with autoimmune conditions), the complete loss of libido that left her sobbing when a doctor said "it's never coming back," and the body changes that made her feel like a "potato."
But this conversation is about more than just lichen sclerosis. It's about the failures of our healthcare system, the importance of advocating for yourself even when you're furious and exhausted, and learning to accept yourself exactly where you're at. Jess's story will resonate with anyone who's ever been dismissed, anyone struggling with vulvar health issues, and anyone navigating the chaos of menopause while trying to hold onto their sense of self-worth.
Highlights:
Why most gynecologists miss lichen sclerosis (hint: they're not actually looking at your vulva).
The proper way to apply clobetasol that doctors don't teach.
How vaginismus became a catch-all diagnosis for any woman with painful sex.
The We Do Not Care Club movement and redefining your value at midlife.
What it means when influencers are the face of menopause marketing.
If you've been dismissed or told your vulvar symptoms are "all in your head," this episode validates your experience and shows you're not alone. And if you're a clinician, this is your wake-up call we can no longer dismiss women's symptoms as psychological when real physical disease is staring us in the face.
Please share this with someone who needs to hear that their symptoms are real and treatment is available.
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