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Podcast

Lichen Sclerosus Basics

Lichen Sclerosus Basics

Introduction

Hey, welcome! This week I wanted to create an episode for all my recently diagnosed LS warriors, specifically, I want to run through the basics of Lichen Sclerosus (LS). I’m sure you’ve been everywhere online from the Mayo Clinic to Wikipedia in search of information. If so, you’ve probably encountered the same content, riddled with medical terms you then have to Google because you are not a medical professional. Trust me, I’ve been there!

This episode will comprise a broad overview of what you need to know to take care of yourself. We will discuss anatomy, what LS is and what causes it, symptoms, treatments, monitoring, and best practices.

Anatomy Basics 101

It is critical to use the proper terms for your anatomy when discussing LS. For example, I didn’t use the word vagina correctly until I started researching LS. This is because growing up, ‘the vagina’ referred to the vulva; it was just that thing in between my legs. Importantly, we must use the correct anatomical terms, especially when discussing our symptoms with medical professionals.

To begin, the vagina is an internal organ. It is what leads from the vulva to the cervix. The vulva is the outside organ consisting of different parts. 

From top to bottom, the vulva consists of the following. The mons pubis (the hairy patch above the clitoris). Below the mons pubis, is the clitoral hood, which houses the glans clitoris. On the outside, you have your labia majora and inside those, you have the inner lips, the labia minora. Under the clitoris, you have your urethra and the vaginal opening. Beneath that, you have the perineum (the patch of skin between the vagina and the anus), and then the anus. 

Image of a vulva with the name of each part and an arrow pointing to where it is located on the image. Part of Lichen Sclerosus Basics is knowing your anatomy!

Why is it Important to Know Your Anatomy?

It is important to use correct anatomical terms when visiting the doctor. For example, instead of saying my vagina itches, you might say, “I’m experiencing itching around the mons pubis and my clitoris”. Or perhaps instead you may say, “I have white patches on my labia minora”. 

Lichen Sclerosus Basics

The research hasn’t reached a complete agreement, but there is a consensus Lichen Sclerosus is an autoimmune disease. It is not an STI, it is not contagious, and it cannot be spread through touch.


What Causes Lichen Sclerosus?

Unfortunately, we still do not know the answer. However, there have been cases like mine where trauma or injury to the vulva may have triggered or worsened Lichen Sclerosus. For example, in my case, I started getting symptoms post-hysterectomy. Further, I’ve heard from other women who experienced trauma (e.g., sexual assault, biopsy, bike accident) to the area and reported symptoms after. Thus, I believe there is a correlation between LS and trauma, but more research is required.

However, while a comprehensive understanding of the cause of LIchen Sclerosus is unknown, know that you didn’t cause your Lichen Sclerosus. This is not your fault; you did nothing wrong. Regardless of your lifestyle, you did not cause your LS. Please, do not blame yourself.


Basics of Lichen Sclerosus Symptoms

The primary symptoms of Lichen Sclerosus are:

  • Itching – mostly this occurs when you lay down to sleep.
  • Whitening of the skin – this can be in patches or a classic figure 8 position.
  • Fissures, ulcers, blood blisters, and lesions.
  • Excessive sweating.
  • Burning and stinging.

Secondary Lichen Sclerosus Symptoms

Secondary symptoms include:

  • Emotional and mental health issues.
  • Relationship problems.
  • Trouble sleeping.
  • Trouble with urination and bowel movements.
  • Pelvic pain.

Severe Symptoms of Lichen Sclerosus

Some more severe symptoms include fusing, scarring, and vulvar cancer.

When Lichen Sclerosus goes untreated for a while, you may develop fusing. For instance, your labia minora could fuse to the labia majora; this may also completely re-absorb over time. You can also have fusing around the vaginal opening or across the opening and/or over the urethra. Finally, you may develop clitoral phimosis, where the clitoral hood fuses over the clitoris (this can lead to reduced sensation).

Vulvar scarring may also occur. This is often associated with itching. Here’s how the scenario might play out. Your vulva itches, so you scratch. However, because Lichen Sclerosus causes thickening of the vulvar skin, it is less elastic than non-Lichen Sclerosus skin. Accordingly, when you scratch, you may create a tear, which will scar over.

Importantly, tearing and scarring can develop into vulvar cancer. Women with Lichen Sclerosus have a 2-6% chance of developing vulvar cancer.

Do not let this percentage send you into a spiral of fear! The fact that you are listening to me, you are diagnosed and treating your symptoms, puts you in a good position. This 2-6% tends to be women who went undiagnosed for years, and/or who are not treating their symptoms with steroids. Lichen Sclerosus is progressive, therefore, it is important to monitor your symptoms, know your triggers, stay informed, and treat your symptoms to decrease the chances of the disease progressing into vulvar cancer.

Diagnosis and Treatment Basics

Lichen Sclerosus is either diagnosed by a biopsy or clinical examination. Once your doctor confirms Lichen Sclerosus, they will usually prescribe a topical steroid. Ideally, they would have demonstrated where to apply and how much.

Insofar as treatment is considered, the gold-standard is ultra-potent topical steroids such as Clobetasol. The second line is Calcineurin inhibitors, for example, such as Tacrolimus and Cyclosporine). Lastly, there are things like platelet-rich plasma, a variety of laser treatments, and ultrasound therapy. 

Alternative therapies involve changing diet, homeopathic medicine, naturopathic medicine.

Image of a plate of fruit representing how some people with LS treat with alternatives such as diet and lifestyle.

I won’t tell you how to treat, I am here to tell you your options. Choose the option(s) that best align with your goals and your values.

Monitoring Basics

Once you are on a plan that works for you, you want to monitor your symptoms and check your vulva for further progression. It is important to check your vulva every month for skin discoloration, growths, new fusing/scarring etc. Furthermore, it is recommended you take a picture every three months to show your doctor.

Image of a camera on a wooden desk, representing the importance of taking a picture of your vulva every 3 months.

Best Practices Basics

Use a barrier cream or emollient in addition to your steroids. This helps prevent rubbing and fights dryness. Some women opt for no underwear, others prefer 100% cotton. Avoid tight clothing, and scented detergents and soaps if you find that irritates you. Follow your maintenance protocol and know your triggers.

Conclusion

This wraps up the big picture of what you need to know about Lichen Sclerosus. Figure out a treatment plan that works for you and follow it to a tee. I hope you learned something new and this is helpful for you. 

If you have any questions, please reach out to me through email at kathy@lssupport.net or on Instagram and Facebook.

IG – https://www.instagram.com/lichensclerosuspodcast/

Facebook – https://www.facebook.com/lichensclerosussupportnetwork

References:

Click here for an episode on secondary treatments.

Click here for an episode on symptoms.

By Jaclyn

I am the author of The Lost Labia Chronicles, a blog about Lichen Sclerosus, Sex, and Mental Health. I was diagnosed with Lichen Sclerosus in 2019 but had been symptomatic for over a decade. My mission is to provide support and hope to others with Lichen Sclerosus.

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