First of all, I never believed I’d be able to write this 18 months ago.
If you’re reading this at the start of your journey with LS, I really feel for you. I was exactly where you are now—searching forums, piecing together bits of information, trying to figure out what the hell Lichen Sclerosus even is.
I told myself that if I ever managed to get a grip on this, I’d come back and share my experience to give others hope—because it’s a truly horrible place to be. But there is hope. Please, don’t let this condition consume and ruin your life. You can get through this—but it does take time.
My Early Experience: Confusion and Frustration
My first symptom was a small white patch on my foreskin. It was barely noticeable and not something the NHS paid much attention to. I pushed it to the back of my mind—until I noticed milky white patches on my glans. Terrifying.
These weren’t surface-level patches, which made it more confusing, and at the time they weren’t painful. Like many others have experienced, the GPs and even sexual health clinicians had very little knowledge of LS. I was brushed off repeatedly: “It’s nothing, don’t worry.”
This was a horrible phase: you know something’s wrong, but no one with the power to help is taking it seriously. It feels like a battle on two fronts—fighting the condition, while also fighting to be heard.
Diagnosis and Private Healthcare
I was lucky—I had access to high-level private healthcare, which I highly recommend if you’re able. Even then, it wasn’t straightforward. I travelled to different specialists, spent hours researching dermatologists with any expertise in LS.
Eventually, I found a dermatologist who specialised in male genital dermatology and LS. By then, more pale patches had come and gone, and it had become painful and itchy. My glans looked lifeless—like the life had been sucked out of it. I was losing my mind.
He took one look and confirmed it: LS. It was a mix of despair (“I have a chronic condition on my penis”) and relief (“At least I finally know what it is and someone can help me”).
Treatment Begins
He diagnosed me with a mild-to-moderate case of LS with a non-typical presentation. I had already tried a few weaker steroid creams, so under his care I began a standard 3-month course of Dermovate (Clobetasol), applied twice daily. I had hope.
I was also using moisturisers, barrier creams, and keeping urine away from the affected area. My life started revolving around this routine—I was constantly checking things. It became all-consuming.
But it didn’t work. In fact, things got a bit worse. After three months, my consultant recommended circumcision. I was gutted. I’d read plenty of negative accounts of adult circumcision, and emotionally, I just wasn’t ready. I refused and gave myself six more months to try and figure it out.
Experimenting and Finding What Helped
My goal was clear: put this into remission. That’s what steroids were supposed to do—and what circumcision sometimes achieves. So I asked myself: how can I mimic the benefits of circumcision without actually doing it?
That’s when I read about autocircumcision—retracting the foreskin and keeping it back. I tried it one evening during a painful episode, and after a few hours, I felt better. It was the only thing that had made a difference.
From then on, I kept my foreskin retracted as much as possible during the day and night. I reduced Dermovate to once a day. I changed all soaps and shampoos to Simple. No barrier creams, no moisturisers—just religiously kept urine away and focused on drying the area out.
Ironically, drying the area out, rather than moisturising, was what seemed to help. This was the beginning of my recovery.
A Slightly Weird (But Helpful) Discovery
Earlier, I said my glans looked dead. I thought: what if I increased blood flow? I’d never had issues in that area before, but I decided to try Viagra—and it worked. Not just in the moment, but for days after. The increased blood flow seemed to rejuvenate the tissue.
I mentioned this to my consultant, and he acknowledged there could be benefits from increased vascularity. I didn’t care about the science—it was working. The pain and discomfort were becoming more and more rare. The white patches (which I now understand were scarring from inflammation) were fading.
Where I Am Now
I had a flare-up a few weeks ago—but it had been months since the last one. Just having that sensation reminded me how far I’d come. I used Dermovate once, and it cleared up overnight.
I still make sure no urine gets on the affected area. I’d got a bit sloppy with that recently, which may be why it flared up. But I barely need to “autocircumcise” anymore, and I’ve pretty much put it behind me.
Final Thoughts
I know some people have it far worse than I did, and not everyone will be as lucky. I’ve left out lots of small details, but I wanted to share what worked for me—because knowledge around this condition is still so limited, and personal stories can trigger new ideas.
I hadn’t read anywhere about autocircumcision or the vascular approach, so maybe it’ll help one or two people out there.
Happy to answer any questions or fill in the blanks—just hope this helps someone.
You’re not alone.