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Support Options

Living with vulvar lichen sclerosus (VLS) can feel isolating, but you don’t have to navigate it alone. Connecting with others who understand your journey—whether through support groups, online communities, or trusted healthcare providers—can make a world of difference.

Support helps you feel seen, heard, and empowered to take control of your care. It’s a space to share experiences, find practical advice, and gain reassurance that you’re not alone. Whether you’re seeking emotional comfort, educational resources, or guidance on managing symptoms, building a network of support is an essential part of living well with VLS.

You deserve to feel supported, informed, and connected. Reach out—you are not alone in this journey.

Helpful Organizations and Websites

ISSVD: International Society for the Study of Vulvovaginal Disease

https://www.issvd.org/

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For their directory of providers: https://www.issvd.org/resources/global-specialty-clinic-and-provider-listing

 

Also follow on their Facebook page for updated events and research: https://www.facebook.com/ISSVD

National Vulvodynia Association

https://www.nva.org/

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For their directory of providers to connect with: https://www.nva.org/providers/

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And follow on their Facebook page for updated events and research: https://www.facebook.com/nationalvulvodyniaassociation

AASECT: American Association of Sexuality Educators, Counselors, and Therapists

Use their directory to find a specialized therapist: https://www.aasect.org/referral-directory

Lichen Sclerosus Support Network
Celebrate the diversity of the Vulva with the Vulva Gallery
Since there is a significant link to autoimmune disorders, it may be important to reach out to a nutritionist/dietitian to discuss food interactions with autoimmune disorders.
Online Support Groups via Facebook

*It's important to note that these groups are able to change and may not be available at the time you click the link (because they are independently managed). 

It's also important to be cautious with what types of groups you join, some are geared towards holistic approaches and some are not monitored for factual support. 

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Lichen Sclerosis / Sclerosus - A Five-Star LS Support Group

https://www.facebook.com/share/g/1BS1YYU1wY/

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Lichen Sclerosus - Management and Support

https://www.facebook.com/share/g/14UYMMQZyE/

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*Lichen Sclerosis/Sclerosus; Healing Naturally

https://www.facebook.com/share/g/1BnyxAcJAz/

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Lichen Sclerosus and Intimacy (advice and support) for Women only

https://www.facebook.com/share/g/18qWttFHeJ/

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​There are many more that are searchable, just use caution.

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