Introduction to My Remission Update
When I moved provinces (Ontario – Quebec), I hoped that finding a healthcare provider to help monitor my condition would be straightforward and quick. After all, LS is a chronic inflammatory skin condition that requires ongoing management and long-term follow-up, so I didn’t want to go too long in between being seen and hoped I would find a good provider once I landed in Quebec.
I was wrong.
Over the past two years, finding a healthcare professional with expertise in lichen sclerosus has been far more difficult than I ever expected. Between long waitlists, limited specialist availability, and a lack of provider awareness, navigating care has often felt like a full-time job.
In this update, I’m sharing where things stand today. Am I still in remission? What symptoms, if any, am I experiencing? What has worked for me? And what have I learned after spending nearly two years without a dedicated specialist overseeing my care?
Whether you’re newly diagnosed, struggling to find knowledgeable care, or wondering what remission can look like long-term, I hope my experience helps you feel a little less alone. Watch the video below!
If You’re Struggling to Find a Lichen Sclerosus Healthcare Provider
If there’s one thing I want others living with lichen sclerosus to take away from my experience, it’s this: don’t give up.
Finding a healthcare provider with experience diagnosing, treating, and monitoring lichen sclerosus can be incredibly challenging. Many patients encounter long wait times, limited specialist availability, or providers who have little experience managing the condition.
If you’re having difficulty finding care:
- Keep asking for referrals. If one referral doesn’t lead anywhere, ask for another (I had to ask for so many).
- Follow up with specialist offices and waitlists. Sometimes persistence makes a difference.
- Don’t be afraid to advocate for yourself and explain why ongoing monitoring is important.
- Consider seeking care from a dermatologist, gynecologist, vulvar specialist, nurse practitioner, or other clinician with experience treating LS.
- Connect with patient communities that may be able to share provider recommendations and resources.
Most importantly, remember that you are not alone. Many people in the LS community have faced similar challenges, and while the process can be frustrating, knowledgeable providers do exist.
To help make that search easier, LichenS Support Network maintains a provider directory featuring healthcare professionals with experience caring for patients with lichen sclerosus.
Visit our provider directory at lssupportnetwork.org/providers to search for providers and additional resources.
Please don’t give up. You deserve access to knowledgeable, compassionate care, and sometimes finding the right provider takes more persistence than it should.
Conclusion on My Lichen Sclerosus Remission Update
One of the biggest lessons I’ve learned is that remission doesn’t mean forgetting about lichen sclerosus—it means learning how to manage it, monitor it, and advocate for yourself over the long term.
While I’m grateful for where I am today, the reality is that no one should have to spend years searching for knowledgeable care. Access to experienced healthcare providers remains one of the biggest challenges facing the LS community.
If you’ve had a similar experience, I’d love to hear from you. Have you struggled to find a specialist? Are you currently in remission? What has your journey looked like?
Please leave a comment below, share this article with someone who may benefit, and subscribe to our YouTube channel for more evidence-based education, patient stories, and expert interviews.
Together, we’re building the resource many of us wish we’d had when we were first diagnosed.
Links From My Lichen Sclerosus Remission Update: 2 Years Without a Specialist
My Diagnosis Story (The OG version)
Expanding Our Support: Introducing AboutLichenPlanus.com
At LichenS Support Network (LSSN), our mission has always been to provide trusted education, resources, and community support for people living with chronic vulvar and skin conditions. We’re excited to share that we’re expanding our efforts beyond lichen sclerosus to include other closely related conditions, including lichen planus (LP) and lichen simplex chronicus (LSC).
To support this growing community, we’ve launched AboutLichenPlanus.com — a dedicated resource designed to help patients, caregivers, and healthcare professionals better understand lichen planus and related conditions.
On the site, you’ll find:
- Easy-to-understand information about lichen planus and its various forms
- Expert educational resources
- Patient stories and lived experiences
- Treatment and management information
- Videos, blogs, and downloadable resources
- Opportunities to get involved in research and advocacy initiatives
If you or someone you know has lichen planus, we encourage you to explore the site, share it with others who may benefit, and help us spread awareness.
We’re also inviting individuals living with lichen planus to participate in our patient survey. Your experiences can help identify unmet needs, improve educational resources, and guide future research and advocacy efforts.
Visit AboutLichenPlanus.com to learn more, and please share it with anyone affected by lichen planus or related conditions. Together, we can build a stronger, more informed, and more supported community.
