Lichen Sclerosus Podcast

What would you do if your topical corticosteroid stopped working? I mean think about. Remember how it felt when you first noticed something was off with your vulva. The uncertainty that crossed your mind. Was this all in your head?

How it felt every time you went to the doctor and they gave you a new diagnosis but the medications they gave didn’t work. The frustration and fear that you would never truly know.

What about the day you were finally told you had Lichen Sclerosus? The feeling of devastation that you would never be rid of this but the feeling of relief that it had a name and you had a plan to manage it.

How freeing did it feel after you started using your medication? To not itch, to stop burning, feel kind of normal again? Now imagine your symptoms start coming back and your medicine is not working anymore.

The anxiety, the fear, the desperation that would wash over you because now you know. You know what Lichen Sclerosus is. You know what it can do to your body. What it can turn into if you don’t use your medication.

What would you be willing to do? Would you try a treatment that only had a 25% chance of working? What about 50% or 90%? Okay, what if it wasn’t FDA approved? Would it make a difference if your insurance didn’t cover it and you had to pay out of pocket? Would you pay thousands of dollars for this treatment? What if you didn’t know how long the results would last? Would that make a difference?

I don’t know. I might be desperate enough to try it. We’re going to look at what options we have if our corticosteroid treatments stop working. Forewarning, none of them are covered by insurance in the USA. I don’t know about other countries. 

Alternate Treatments Fractional Co2 Lasers

• Go by various names, MonaLisa Touch or CO2RE Intima, depending on the manufacturer
• Use lasers to remove layers of skin. When the skin regenerates it’s supposed to be supple, revitalized, and symptom-free
• Can range anywhere from $1,300 - $3,000 and up depending on the doctor, size of the facility and location of the practice
• Have past two recent clinical trials
  • "Laser therapy is a promising option for patients not responding to topical corticosteroid therapy or patients wishing to reduce long-term corticosteroid maintenance use."
  
  

Platelet-rich plasma/PRP

• O-Shot
• Use injections of your platelets, which have been harvested from your blood injected into your vulva to improve the blood flow and “encourage tissue regeneration”, thus curing your symptoms
• can range between $500-$1500
• Double-blind clinical test recently published
• They concluded PRP was not a good treatment for vulvar Lichen Sclerosus and suggested there be more comparison studies.

Ultrasound therapy

• Sends ultrasound waves through different areas of the vulva. The thinking is to use sound energy to rejuvenate the skin and cure the patient of their symptoms.
• Could not find a price range
• Chinese clinical study published in 2017
• Although 90% had some improvement after one year only 25% maintained cured after five

Please see complete show notes for more details and links to studies. Don't forget to subscribe! Thanks! Kathy

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

Just a quick warning, I will be talking about sexual things. If you are sensitive to that I completely understand but this may not be the blog for you.

For complete show notes and links to resources visit the website.

https://lssupportnetwork.org/how-to-have-better-sex-even-though-you-have-lichen-sclerosus/

Join our free international virtual meetups

at https://lssupportnetwork.org/connect

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Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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.

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

Lichen Sclerosus affects everyone differently. Each person can have a different variety of symptoms or no symptoms at all. This week I tell you about the common, severe and secondary symptoms I learned about in my research. I also discuss how some of them have affected me. Common Symptoms:

• Itching (mostly at night)
• Burning and soreness
• Fissures, nonhealing legions, and blood blisters
• Excessive sweating between your legs
• Chronic urinary tract or yeast infections

Severe Symptoms:

• The fusing of the labia
• The fusing of the clitoral hood
• Valvular scarring

Secondary Symptoms:

• Depression
• Isolation
• Fatigue
• Anxiety
• Loss of relationships
• Pain during sex, urinating or having a bowel movement
• Valvular cancer

While all of these symptoms are bad the mental health issues can cause the most harm because we may not even realize we are having them. This is why we need to build our community and start speaking to each other. I want to start building a network of support where we can text or talk to each other. I want to help and I need your help.

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

Lichen Sclerosus is often misdiagnosed many times before it is finally correctly diagnosed and treated. This can lead to frustration, disappointment, and worsening symptoms. Unfortunately, this is what happened to Clare Baumhauer. After forty years of suffering, she was told she had developed vulval cancer due to Lichen Sclerosus. My story had many of Clare's twists and turns but fortunately, was caught early. Share your story and help grow our community so we can help each other survive this awful disease. I look forward to hearing from you. Resources used in this episode: https://www.vice.com/en_us/article/7xn87b/lichen-sclerosus-vulva-cancer-symptoms https://acpinternist.org/archives/2011/06/vaginal.htm https://www.rightdiagnosis.com/l/lichen_sclerosis/misdiag.htm

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

February is Vulval Health Awareness Month, Vulvuary! In celebration, I give you some stats and introduce you to the Association for Lichen Sclerosus and Vulval Health (ALSVH). We take a look at the Lichen Sclerosus Manifesto as I interject many times (I'm sorry. I can't help it!) http://lichensclerosus.org/wp-content/uploads/2011/02/LICHEN-SCLEROSUS-MANIFESTO-PDF.pdf

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

Hi! My name is Kathy. I have been diagnosed with Lichen Sclerosus for two years but suffering much longer. I have minimal knowledge of the disease and I was okay with that. That was until about two weeks ago when I had the worst outbreak since I started my medication. I had no one to talk to or ask questions. I decided to find my community and learn as much as I could about this illness. So this is a journal of my learning about and living with Lichen Sclerosus. Please join the community and let's give each other hope and support!

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…