Introduction
If you’re not familiar with ISSVD, it’s the International Society for the Study of Vulvovaginal Disease, and this Congress brings together some of the clinicians and researchers working at the forefront of vulvar and vaginal health. And there was so much presented at ISSVD 2026 that I wanted to bring some of it back to you—but without making you sit through hours of scientific presentations or decipher research jargon. So in this video, I’m breaking down some of the research and conversations that stood out to me most as a patient advocate, in normal-person language, and focusing on what I think actually matters to patients.
Some Important Notes Before We Dive In
And yes, before we get started: this is a long one!
If you’ve followed my work for any length of time, you probably know how passionate I am about vulvar-health research. After spending several days surrounded by new research, thoughtful conversations, and people who have dedicated their careers to these conditions, it was incredibly hard for me not to share everything that stood out to me.
If you’d prefer the quicker version, don’t worry! I’ll also be putting together a short, high-level YouTube recap covering my biggest takeaways from ISSVD 2026.
Disclaimers
A quick disclaimer before we dive in: Scientific conferences can include everything from well-established evidence to preliminary findings, early-stage studies, and ongoing clinical trials. Just because researchers presented something at the ISSVD World Congress does not automatically mean they have proven it effective, incorporated it into clinical guidelines, or established it for routine clinical use.
This video is intended for educational purposes only and does not constitute medical advice. Please speak with your healthcare provider before making changes to your treatment or healthcare plan.
What You’ll Find In This Video
We’re going to talk about some genuinely exciting developments in lichen sclerosus research, including what scientists are learning about the immune pathways that may be involved in LS and a potential new topical treatment that has now reached Phase 3 clinical research. We’ll also look at emerging regenerative treatments and why interesting new research is very different from proven treatment. We’ll talk about pediatric LS, vulvodynia and chronic vulvar pain, why an LS biopsy doesn’t always give a perfectly straightforward answer, and some surprisingly practical research on allergens in products marketed specifically for vulvar use.
And throughout all of this, I want to keep coming back to the same question: What does this actually mean for the person living with vulvar disease? Because that was probably my biggest takeaway from ISSVD 2026. The science is advancing, but research matters most when those advances translate into earlier diagnoses, better treatments, better quality of life and better care. So, with that said, let’s get into the research.
Chapters on Lichen Sclerosus Research at the 2026 ISSVD
0:00 – Introduction
3:33 – Underlying cause(s) of lichen sclerosus
7:32 – Phase 3 trial for delgocitinib for lichen sclerosus
11:33 – Microfragmented adipose tissue transplantation
19:47 – Pediatric lichen sclerosus
26:03 – Some comments on vulvodynia
31:23 – Pathology and biopsies
36:35 – Natural and hypoallergenic products for lichen sclerosus
41:47 – Sexual health and social media panels
49:49 – Overall thoughts & conclusion
Important Links
Conclusion on our Lichen Sclerosus Research Is Changing Video
After leaving ISSVD 2026, I genuinely felt hopeful. We still have huge gaps in our understanding of LS and other vulvar conditions, and there is so much work left to do. But researchers are asking more specific questions, investigating new treatments, looking more closely at pain and quality of life, and increasingly recognizing that patient experiences belong alongside the science.
And for a community that has spent far too long feeling overlooked, that movement matters. Nothing I discussed today means we’ve suddenly solved LS or that every promising treatment will ultimately work. But compared with where vulvar-health research has been historically, I think there are real reasons to be excited about where we’re headed. I left ISSVD 2026 feeling more hopeful about the future of vulvar health research—and more determined than ever to make sure patients have a voice in shaping that future. Thank you so much for watching, and I’ll see you in the next one.
Support Resources
P. S LSSN is 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 and caregivers better understand and manage lichen planus.
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.
