Lichen Sclerosus Resources for your LS Journey

The following resources will help answer questions about lichen sclerosus, treatment, mental health, physical health, lichen sclerosus support, and so much more!

Education

Keep scrolling for a list of educational resources. These include medical organizations, as well as non-profit education organizations.

Lichen Sclerosus information & Education Resources can be fundamental for your LS journey.

• List of education pages.
• Podcasts.
• List of educators to follow.
• eBook

Free LS eBook

Another great resource for education is my eBook. I have a full chapter on education that can really help you if you are looking to learn more about the disease, treatment options, etc.

• Evidence-based information.
• Treatment options.
• Information on vulvar cancer.
• How to choose a treatment plan.
• So much more.

Get Your Free Copy Now

Lichen Sclerosus Support

Support is such a key part of healing and acceptance with Lichen Sclerosus. Below I list people to follow as well as support groups that exist. These are great resources to bookmark.

Keep scrolling for Lichen Sclerosus support options for your LS journey.

• Support groups.
• LS virtual support meetups.
• Support forums.

Resources for Education

Podcast

Lichen Sclerosus Podcast. One of the single most pivotal podcasts out there dedicated to LS. The podcast is the epitome of education, with the host, Kathy, bringing on some of the world's leading Lichen Sclerosus specialists and medical providers for interviews.

The Vulva Diaries Podcast. Hosted by Dr. Amanda Selk, one of the leading LS and vulvovaginal specialists practicing out of Toronto, Canada, Dr. Selk interviews vulvovaginal specialists, including Dr. Gayle Fischer about Lichen Sclerosus, Lichen Planus, and a number of other vulvovaginal conditions.

The Tight Lipped Podcast. This podcast is a public conversation about “private” pain and covers a multitude of different genitopelvic pain conditions.

Websites and Organizations

Lichen Sclerosus Support Network. A not-for-profit organization whose mission is to provide education to patients and providers to get diagnosed earlier. They have education on anatomy, vulva checks, steroid use, etc. All of my blogs and videos for 2023 will be featured on their website. All the fundamentals are there. Click here to visit.

The Center for Vulvovaginal Disorders. An excellent medical resource for research and publications on Lichen Sclerosus and other vulvovaginal conditions. Click here to visit.

Lichen Sclerosus and Vulval Cancer Awareness. They have tons of images, documents, and resources on Lichen Sclerosus and Vulvar Cancer. Click here to visit.

General Information Resources on Genitopelvic Conditions

Websites

International Society for the Study of Women's Sexual Health – Patient Site

International Pelvic Pain Society – Informational Handouts

International Society for the Study of Vulvovaginal Disease – Patient Handouts

Vulvovaginal Disorders – Patient Handouts

British Society for the Study of Vulval Disease – Patient Information Section

Pelvic Pain and Vulvodynia Education

Vulvovaginal Disorders

Origin Pelvic Pain Resources

Books

When Sex Hurts: Understanding and Healing Pelvic Pain (Revised Edition) by Andrew Goldstein, Caroline Pukall, Irwin Goldstein, and Jill Krapf.

This is a Vulva: Everything You Need to Know that You Didn't Get Taught at School by Jo Corrall.

Female Sexual Pain Disorders: Evaluation and Management, 2nd Ed. Edited by Andrew Goldstein, Caroline Pukall, and Irwin Goldstein.

You are Not Broken: Stop “Should-ing” All Over Your Sex Life by Kelly Casperson

The Vagina Bible: The Vulva and the Vagina – Separating Myth from the Medicine by Jen Gunter

Ending Female Pain: A Woman's Manual, 2nd Ed, by Isa Herrera

Heal Pelvic Pain: The Proven Stretching, Strengthening, and Nutrition Program for Relieving Pain, Incontinence, IBS, and Other Symptoms Without Surgery by Amy Stein.

The Vagina Bible by Jen Gunter

The Menopause Manifesto by Jen Gunter

Come as You Are: Revised and Updated: The Surprising New Science That Will Transform Your Sex Life by Emily Negoski

Unlock your Menopause Type by Heather Hirsch

Come Together: The Science (and Art!) of Creating Lasting Sexual Connections by Emily Negoski

Better Sex Through Mindfulness: How Women Can Cultivate Desire by Lori Brotto

Rekindling Desire, 3rd Ed., by Barry McCarthy and Emily McCarthy

Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness, by John Kabat-Zinn and Thich Nhat Hanh

Comfortable with Uncertainty: 108 Teachings on Cultivating Fearlessness and Compassion by Pema Chodron and Tami Simon

Pelvic Pain Explained by Stephanie Prendergast and Elizabeth Akincilar

Let Me Count the Ways by Marty Klein

Databases and Provider Directories

Vulvar Lichen Sclerosus Specific

Lichen Sclerosus Provider Directory by Lichen Sclerosus Support Network

General Genitopelvic Conditions

International Society for the Study of Women's Sexual Health (ISSWSH)

International Pelvic Pain Society (IPPS)

International Society for the Study of Vulvovaginal Disease (ISSVD)

National Vulvodynia Association (NVA)

Pelvic Floor Physical Therapy

APTA Pelvic Health

Vagina Rehab Doctor: Women of Color Pelvic Floor Physical Therapy Directory

Canadian Physiotherapy Association

Pelvic Rehab

Pelvic Guru

myPMF

Crowdsourced: Vaginismus, Vulvodynia, Vestibulodynia Providers

Sexual Health Medicine Providers

International Society for Sexual Medicine (ISSM)

Society for Sex Therapy and Research (SSTAR) Find a Therapist (North America)

American Association of Sexuality Educators, Counselors, and Therapists (AASECT)

Board of Examiners in Sex Therapy and Counselling in Ontario (BESTCO) (Ontario, Canada only).

Mental Health Providers

Psychology Today
Inclusive Therapists
Therapy Den
GoodTherapy
Open Path (Low fee/sliding scale therapy)

AASECT Referral Directory
AACAST Referral Directory

Menopause Providers

North American Menopause Society Provider Directory

People to Follow

Resources for Individualized Support

I get it. Support groups aren't for everyone. You aren't always in a headspace where you are able to listen to other people's experiences with LS. And sometimes, like me, you are super introverted, shy, and have a difficult time sharing and asking questions in a group setting.

I offer 1:1 lichen sclerosus peer support calls for folks who are looking for more individualized support based on their specific needs.

For more details watch the video below or check out my booking page by clicking here.

Lichen Sclerosus Support Groups

*Please note, with support group options, I cannot vouch for them all. I am simply listing what is available so that you know your options and can choose what is best for you. I never want you to feel like you have to work with me or join LSSN's bi-weekly support virtual meetups. Do your own research and go for what is most supportive for you in your journey.

Support Groups

–Lichen Sclerosus Support Network Membership: Learn more here.

–Lichen Sclerosus Support Virtual Meetups: Bi-weekly meetups via Zoom every other Saturday from 2-4 pm and 7-9 pm facilitated by Kathy of Lichen Sclerosus Podcast and myself. Click to join here.

Facebook Lichen Sclerosus Groups

*Please note, with support group options, I cannot vouch for Facebook Support Groups or online forums. I am simply listing what is available so that you know your options and can choose what is best for you. I always encourage you to do your own research and go for what is most supportive for you in your journey.

• Lichen Sclerosus Canada.
• Lichen Sclerosus – sclerosis – UK Support Group for Women
• Lichen Sclerosis/Lichen Sclerosus – A Five Star Support Group.
• Sharing is Caring About Lichen Sclerosus.
• For Loved Ones: A Group Of Sharing About A Loved One With Lichen Sclerosus.
• Lichen Sclerosis Support Group.
• For Parents and Children with LS: A Group of Sharing About Children With Lichen Sclerosus.
• Lichen Sclerosis Support Group
• Lichen Sclerosus in children
• Lichen Sclerosis & Lichen Planus Support Group Australia
• Lichen Sclerosus/Lichen Planus in Children UK support group for parents

Lichen Sclerosus Forums

• Reddit r/lichensclerosus.

Lifestyle Resources

Pelvic Health Yoga Membership by Penny

Many of us with Lichen Sclerosus live with pelvic pain, tight pelvic floor muscles, etc. Thus, in addition to Lichen Sclerosus treatments, a great complementary piece to your main treatment is pelvic floor physical therapy and/or pelvic floor yoga.

Penny, a fellow lichen sclerosus warrior, pelvic pain sufferer, and yoga teacher put together a pelvic health yoga membership to address pelvic pain and reduce stress. The Pelvic Health Yoga membership comes with both live and on-demand yoga classes, which makes it accessible for you to do your own practice at any time to make your body & mind (and more importantly your pelvis) happy!

The yoga classes are Hatha-inspired to help calm the nervous system. This is important because stress greatly affects lichen sclerosus. Thus, it is important as fellow lichen sclerosus warriors that we practice stress-reduction techniques such as these. Additionally, the program teaches and encourages pelvic floor relaxation, which is beneficial for pelvic pain. Regular practice of pelvic floor yoga can also help foster a greater connection between your mind-body, and, specifically your pelvic floor.

I have personally seen an incredible improvement in pelvic floor tension since joining the membership. Further, by being in the membership, I take steps to continuously work on my stress levels! Let me know if you join! I'd love to see your face in the weekly classes.

What You Get

Weekly live 45-minute Pelvic Health Yoga class
On-demand access to yoga in the form of:
45-minute Pelvic Health Yoga classes
Meditations
Breathwork
Pelvic Reset poses
Pelvic Flows

Facebook community for you to ask questions, get support, and vibe with Penny.

Oh, and if you aren't already, make sure to follow Penny on Instagram as she has some amazing pelvic floor and LS content.
Sign up here and don't forget to use my discount code (JACLYN) to get a 30-day FREE TRIAL + 30% off of your first month!

Feel free to email me at jaclyn@lostlabia.com if you want to chat more about my experience with pelvic floor yoga.

Lichen Sclerosus Resources for Sexual Health

Dating App for Folks with Sexual Health-Related Difficulties

Shana Farabaugh (Sex and Chronic Illness Educator)

Dr. Sanaz Yaghmai (Trauma-Informed Support Coach & Consultant)

Vulva Love – a website dedicated to improving sexual health and providing quality education.

OMGYes – a web platform dedicated to educating people about their bodies and sexual pleasure.

International Society for Sexual Medicine (ISSM) – organization established to promote research and exchange of knowledge in the field of human sexuality.

Resources If You Are In Crisis

Lichen sclerosus is a heavy diagnosis. It can have a deep impact on our mental health.

If you are in crisis and/or suicidal, there is hope. There is help available to you 24/7. Please refer to some of the following crisis support lines and services by clicking on the button below.