Lichen Sclerosus Podcast

Hey friend! I recently had the pleasure of chatting with Dr. Melissa Mauskar, a true rockstar in the world of vulvar health research. She illuminated some fascinating new findings about the hormone and microbiome landscapes in lichen sclerosus.

I walked away feeling so hopeful about how this work might improve patient care down the road! 🙌 Dr. Mauskar broke down the key takeaways in an accessible way – no need for a medical degree to follow along! Whether you have lichen sclerosus yourself or treat patients, I think you'll find this chat insightful.

A few highlights that caught my ear:

• The role of progesterone and other hormones in LS skin
• How treatment impacts microbiome diversity
• Exciting areas for future research.

Dr. Mauskar's passion for patient-centered care and collaboration across specialties to move the needle is inspiring. She helped me understand how this study into hormones and the vulvar microbiome in lichen sclerosus, while small, contributes an important puzzle piece to better understanding and treating this chronic condition.

Let me know what intrigued or surprised you! I always love hearing your experiences and thoughts. And if you appreciate Dr. Mauskar and other clinicians advancing vulvar health, show some love in the comments! ❤️

In this episode, you will be able to:

• Explore the intricate connection between hormonal balance and lichen sclerosus for a holistic understanding.
• Uncover the role of the microbiome in lichen sclerosus and its impact on treatment approaches.
• Create personalized treatment plans tailored to individual needs for more effective management of lichen sclerosus.
• Gain insights into providing comprehensive care for vulvar health, enhancing patient outcomes.
• Discover the benefits of collaboration in advancing research and care for vulvar health.

Dr. Melissa Mauskar, an Associate Professor in the Department of Dermatology and the Department of Obstetrics and Gynecology at UT Southwestern Medical Center, is not your typical expert. She's a trailblazer in the field, serving on the board of the newly founded Vulvar Dermatoses Research Consortium and as the secretary general for the North American branch of the International Society for the Study of Vulvovaginal Disease.

With a deep commitment to patient care and a particular focus on lichen sclerosus, Dr. Mauskar's latest research delves into this condition's hormonal and microbiome aspects. Her dedication and expertise in unraveling the complexities of lichen sclerosus make her a true star in the field.

00:00:12 – Introduction to Lichen Sclerosis Podcast 00:02:44 – Research Project Background 00:09:36 – Study Methodology and Findings 00:12:42 – Potential Impact and Future Research 00:15:05 – Skin Hormone Levels and Implications 00:17:02 – Significance of Study Results 00:18:01 – Understanding Microbiome 00:20:35 – Treatment Approach and Microbiome 00:24:33 – Role of Yeast in Lichen Sclerosis 00:27:30 – Future Research and Hormonal Influences 00:33:30 – Recognition of Healthcare Providers 00:34:06 – Importance of Care 00:34:52 – Momentum in Menopause Research 00:35:43 – Need for Specialized Healthcare 00:36:31 – Conclusion and Call to Action

• Link to the abstract for the study mentioned in the podcast: This will provide detailed information about the study conducted by Dr. Mauskar and her team, “Assessment of the Cutaneous Hormone Landscapes and Microbiomes in Vulvar Lichen Sclerosus,” allowing you to delve deeper into the findings and implications. https://pubmed.ncbi.nlm.nih.gov/38368928/
• Dr. Mauskar's Instagram profile: Follow Dr. Mauskar on Instagram to stay updated on her work, research, and insights in the field of dermatology and women's health. https://www.instagram.com/melissamauskarmd/
• Contact Dr. Mauskar at UT Southwestern Medical Center: If you are in the UT Southwestern area and in need of a dermatologist, reach out to Dr. Mauskar for expert care and consultation. https://utswmed.org/doctors/melissa-mauskar/

If you'd like to share your voice in person (virtually), join our next virtual meetup.

We meet every other Saturday from 2–4 PM and 7–9 PM Eastern Standard Time. Take this opportunity to share your diagnosis story, what is and isn’t working for you, and ask a question to the group.

Share your experience and heal. I have met many incredibly stron...

Covid-19 aka coronavirus has turned our world upside down. So I went searching to see what people in the online communities were saying about it. Some had questions and concerns about our risk as Lichen Sclerosus patients.

They asked questions like, does LS or our treatment make us susceptible to Covid-19? What makes you high risk? What’s the difference between autoimmune and immunosuppressive? So, I went researching, reached out to some doctors, and this is what I found.

What About Lichen Sclerosus Could Put Us At Risk?

In previous episodes, we learned researchers believe Lichen Sclerosus is an autoimmune disease with a genetic component. This means our immune system attacks healthy tissue. Imagine soldiers attacking their own civilians because they think they are the enemy. This is how an autoimmune disease behaves.

By this definition I can conclude, people with autoimmune diseases are not at higher risk for Covid-19 because their immune systems are working at a normal or higher level, it’s just attacking the wrong cells.

Who Is At High Risk For Covid-19?

• Elderly 65 and older but especially 80+
• Diabetics (no matter what type)
• People with heart conditions (high blood pressure, cholesterol, plaque around the heart or in the arteries, etc.)
• Those with asthma, COPD, and smokers (already have compromised lungs)
• People with compromised immune systems
  • People with cancer
  • People with HIV/AIDS
  • People who have had a transplant
  • People taking high doses of steroids or medications call biological, often for autoimmune conditions
  
  

Lichen Sclerosus is often treated with immunosuppressant drugs such as corticosteroids. This weakens the soldiers, hence they can’t hurt the civilians. Does this increase our risk?

What The Experts Say

There wasn’t enough material for a solid answer, so I reached out to Dr. Elizabeth Eden, a gynecologist specializing in Lichen Sclerosus in Manhattan New York. When asked she said, “Topical corticosteroids used for lichen sclerosus do not make one more susceptible to infection with Covid-19. People who are on immunosuppressive therapy or who are immuno-compromised are at risk of infection and complications associated with Covid-19 but just having lichen sclerosus and using topical steroid gels or creams do not place one in one of those categories.”

This was a relief. Our medication was not putting us at risk but I wondered if we should stop just in case, as we are learning new things about Covid-19 every day.

According to the British Association of Dermatology, “Not without consulting your doctor.” At this time they do not believe we are increasing our risk for Covid-19 and it’s complications by using these drugs. If you have other high-risk factors and are on immunosuppressant drugs they say speak with your medical professional and develop a plan together taking into account the risk from all sides. You could stay on the drug and have your immune system compromised or get off and let your autoimmune disease flare up and possibly progress. This has to be an educated decision considering all sides. Our best chance is to stay healthy and follow the best practices.

Conclusion

Lichen Sclerosus and it’s immunosuppressant treatments do not make us vulnerable for Covid-19 or its complications. Continue to take your medications unless you have discussed it with your doctor. Follow the recommended best practices to try and stay healthy. Stay calm and don’t stress.

If you think of someone who may find this information helpful please share this episode or podcast. We are all in this together! Stay safe, calm and have an amazing week.

If you're feeling the weight of unresolved issues in your intimate relationship, then you are not alone! Couples often struggle to communicate openly about sex and intimacy, leading to frustration and distance instead of connection. But what if there's a way to enhance your communication and connection, even in the midst of challenges? Let's dive into the journey of a couple navigating the complexities of long-term relationships and discover the transformative power of open dialogue and shared experiences.

In this episode, you will be able to:

• Gain insights into managing pelvic floor dysfunction in individuals dealing with Lichen Sclerosus for better everyday comfort and confidence.
• Explore strategies for maintaining sexual intimacy while managing Lichen Sclerosus to nurture connection and closeness with your partner.
• Learn how to provide meaningful support to partners coping with Lichen Sclerosus, fostering empathy and understanding in the relationship.
• Enhance communication about sexual health in long-term relationships, fostering a deeper emotional and physical connection with your partner.

My special guests are Annie and Micheal

Annie and Michael bring a unique perspective to the conversation as a couple navigating the challenges of living with Lichen Sclerosus. Annie's personal journey with LS, from dealing with misdiagnosis to undergoing a biopsy, provides a firsthand understanding of the physical and emotional toll this condition can take. Michael, as a supportive partner, shares his experiences of navigating the impact of LS on their intimate relationship and the communication challenges they faced during this time. Their honest and open dialogue sheds light on the complexities of managing LS within a long-term relationship, making their insights valuable for others in similar situations.

The key moments in this episode are:

00:00:00 - Introducing Annie and Michael

00:02:22 - Annie's LS Journey

00:08:25 - Biopsy Process and Support

00:13:02 - Communication and Relationship

00:15:55 - Medical Diagnosis and Initial Concerns

00:17:43 - Age and Diagnosis

00:19:06 - Diagnosis Confirmation and Frustrations

00:23:26 - Partner's Involvement and Education

00:26:35 - Medication Side Effects and Treatment Adjustments

00:30:20 - Advocating for Yourself

00:32:30 - Importance of Education for Doctors

00:36:06 - Impact on Relationships

00:39:37 - Transformation through Communication

00:43:47 - Coping with Stress and Loss

00:45:05 - The Importance of Communication in Relationships

00:47:17 - Broadening Perspectives on Intimacy and Sex

00:51:27 - Seeking Support for Partners and Caregivers

00:55:43 - Journey to Healing with Dr. Bob

00:58:52 - Excitement for the upcoming summit

00:59:27 - Doctor Bab's thorough care

01:00:53 - Virtual visits with Doctor Bab

01:01:37 - Open communication about sex

01:02:38 - Summit topics and invitation

• Register for the Holistic Healing Summit from May 13th to 17th at lssupportnetwork.org to gain valuable insights and information on intimacy, communication, sexual intimacy, and emotional intimacy in the context of Lichen Sclerosus.
• Explore the book Sex Talks: The Five Conversations That Will Transform Your Love Life by Vanessa Marin for valuable guidance on enhancing intimacy and communication in your relationship. https://www.amazon.com/Sex-Talks-Five-Conversations-Transform/dp/1668000016
• Connect with Dr. Babb, a vulvar specialist, for thorough examinations and expert guidance on managing Lichen Sclerosus. Virtual visits are also available for those who are not local. https://havencenter.com
• Explore the SweetSpot Labs body wash and other products recommended by Annie for gentle care of the skin, especially for those with Lichen Sclerosus. https://shop.sweetspotlabs.com/

Check out all the ways Lichen Sclerosus Support Network can help you at lssupportnetwork.org.

Ashlie Crewe, a Physical Therapist with a Psychology degree, embarks on a journey to help patients manage their chronic pain using neuroscience, only to find her own trial by fire as she discovers a unique way to challenge a patient's overprotective nervous system.

"The beautiful thing, good and bad, is that physical therapists, we're not allowed to prescribe medicine in the United States. So I think one of the cool things about my job then is we're really taught to work with the human body, and we're not allowed to order imaging, we're not allowed to prescribe medications.”

Ashlie Crewe is a Pelvic Health physical therapist and teacher/mentor to Pelvic Health physical therapists across the United States. She has a passion for neuroscience, psychology, and Pelvic Health, making her an expert in persistent pelvic pain.

Ashlie Crewe found her true calling when she attended her first pelvic health class after physical therapy school. The class blew her mind and she knew the neuroscience of pain was the way to help patients with persistent pelvic pain. She quickly developed her skills and started to understand how to apply the neuroscience of pain to her practice.

She creates a space with her patients to make them feel safe and trusts them to choose their own treatment path. She assesses their tissues, looking for any signs of adherence, and then checks their nervous system to see how it responds. Through this practice, she helps to rewrite the painful stories her patients have been told and shows them that physical therapy can provide them with lasting relief.

In this episode, you will learn the following:

1. How does physical therapy help treat chronic pain and persistent pain conditions?

2. How does the relationship with a therapist impact a patient's improvement?

3. How can physical therapists use neuroscience to assess and treat pelvic pain?

Resources:

International Pelvic Pain Society - https://www.pelvicpain.org/

Drayer Physical Therapy for northeast USA - https://drayer.urpt.com/

Upstream Rehabilitation for across USA - https://urpt.com/

Other episodes you'll enjoy:

Lichen Sclerosus and Overactive Pelvic Floor - https://youtu.be/mxQjC3jEoYg

Dr. Rachel Rubin: Unlocking Clitoral Fusing Through Non-surgical Lysis - https://youtu.be/F5KO5LGXRx0

Vulva Checks for Lichen Sclerosus: Everything You Need To Know - https://youtu.be/E9fnXDh5up4

Connect with me:

Instagram: https://www.instagram.com/lichensclerosuspodcast/

YouTube: https://www.youtube.com/channel/UCQXU-nhfnn-nScR_5VyUdCQ

Website: https://lssupportnetwork.org/

If this episode was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate.

Loved this episode? Leave us a review and rating here: https://lovethepodcast.com/lspodcast

Does stress cause Lichen Sclerosus flareups? The effects of stress on LS have not been researched. However, my personal experience is that they are connected. Other women in public forums have also associated their Lichen Sclerosus flareups with their level of stress. In today’s hectic and scary environment it is important that we manage our stress and minimize our flareups.

The changes implemented to contain the coronavirus are affecting a lot of us. Children are out of school. There is a shortage of toilet paper, soap, and medicine in the stores. Sporting events and large gatherings are canceled. The fear of the unknown is also causing us stress.

This stress has caused my Lichen Sclerosus to flareup with intensity. My vulva is itching more intently. I am also developing fissures and possibly a blister. This is by far the worst flareup I’ve had since after I received my diagnosis. These flareups can raise anxieties and isolation which can lead to depression. This is one of the main reasons we need to create a support group! I have also included 5 daily things and 5 quick things we can do to minimize stress.

5 Daily Things To Do To Minimize Stress

• Get Plenty of Sleep
• Eat a Proper Diet and Drink Plenty of Water
• Exercise
• Put Your Priorities in Place
• Laugh

5 Quick Stress Relievers Get a HugHugs are great. They release oxytocin which gives you higher levels of happiness and lower level of stress. So, grab somebody you like and give them a squeeze.

Try aromatherapyBurn a candle, incense or diffuser and relax. Let the scent take you to a happy place and melt the stress away. Aromatherapy can help you feel energized, more relaxed and more present. So burn that stress away!

Do Some ArtworkResearch shows coloring can focus your mind, especially when coloring complex patterns. Draw, paint or color. Either way, relax and let your mind wander.

Express GratitudeTake stock of all the things you have to be thankful for. Studies show grateful people have better mental health, lower stress and better quality of life. Look on the bright side and brush that stress away.

PlayPlay with a pet, kids, significant other or friends. Enjoy that quality time and be in the moment. Let loose of the stress and just have fun!

If we do a few of these a day we will manage our stress and our Lichen Sclerosus flareups should minimize. At the very least we will be happier and enjoy the people around us more.

I hope you have an amazing week. Please reach out by email or leave me a voicemail. I can’t wait to speak to you!

Resources:

https://www.youtube.com/channel/UCJkxjzp8DFadQRiJp3yUdKg

https://www.verywellmind.com/tips-to-reduce-stress-3145195

https://www.ncbi.nlm.nih.gov/pubmed/18190880