Lichen Sclerosus Signs and Symptoms: Does the Difference Matter?

Introduction

Did you know there is a difference between signs and symptoms? I sure didn't. For the longest time, I called everything a lichen sclerosus symptom. Unbeknownst to me, I was using the wrong terminology for quite some time. However, once I learned the difference, I realized this is an important distinction that folks with lichen sclerosus should understand. In this post, I will explain what differentiates a sign and a symptom. I will highlight lichen sclerosus signs and lichen sclerosus symptoms. Finally, I will explain why, in my opinion, this difference matters.

What are Signs?

Signs are things that can be seen by someone when looking at the vulvar skin. Signs can be seen by both the patient and the doctor. 

Lichen Sclerosus Signs

• Skin discoloration (e.g., whitening of the skin that may present as general whiteness or thickened white plaques of skin).
• Fusing, phimosis, and scarring. See my video for an in-depth explanation of what these terms mean by clicking here.
• Thickened, wax-textured skin.
• Skin that appears crinkled and thinned out, despite the fact that below the surface level, the skin is thickened.
• Splitting of the skin (e.g., cuts, fissures, tears).
• Bruising (e.g., if you scratch aggressively, this can cause bruising).
• Swelling (e.g., if you scratch aggressively, this can cause minor swelling).

*Please note, you do not have to have all the signs to have lichen sclerosus.

Lichen Sclerosus Signs Explained

All of these are things that can be seen by looking at the vulvar skin. For example, a clinician looking at vulvar skin is able to see fissures, thickened white plaques, waxy texture, scarring, etc. You could also see these signs if you were to examine your vulva with a mirror and with good lighting. And, FYI, if you aren't examining your vulva once a month, I encourage you to get into the habit of doing so. Follow Lichen Sclerosus Support Network for guidance and support with vulva checks.

Symptoms

A symptom is a feature that indicates a condition or disease; a symptom is something the patient can feel. 

Lichen Sclerosus Symptom Examples

• Vulvar itch
• Vulvar pain
• Burning or stinging
• Paper-cut-like sensations (fissures)
• Pain with sex
• Tearing with sex
• Asymptomatic – in some cases, patients have signs but no symptoms.

*Please note, you do not need to have all symptoms to have lichen sclerosus.

Lichen Sclerosus Symptoms Explained

Unlike signs, your doctor cannot physically see your symptoms. If you are experiencing an itch, even if you are sitting on their table feeling a super intense itch, you can communicate this but they cannot literally see the itch on your vulva.

Similarly, you can express the pain you feel but the pain is not something a doctor can see. They may be able to conjecture that there is pain based on certain signs, such as a fissure, but they cannot see the pain. In this instance, they see a fissure and know that fissures can be painful; therefore, they infer the patient is in pain.

Why it Matters

Alright, you might be thinking, cool…why should I care? Does the difference between a sign and a symptom really matter?

Fair questions! In my opinion, the difference does matter. First, it can help you deepen your understanding of lichen sclerosus, and second, it can help foster good communications between you and your doctor.

Better Understand Lichen Sclerosus

Let's talk about how the distinction between signs and symptoms can help you better understand lichen sclerosus. To do so, let's consider a few scenarios.

Scenario #1

A patient comes in for a follow-up appointment for their lichen sclerosus. During the clinical examination, the doctor notes, “There are no active signs of disease”. The patient feels frustrated because they have symptoms and feel the doctor is telling them they are fine.

In this scenario, when the doctor says, “There are no active signs of disease”, they aren't saying you cannot be experiencing symptoms or that your symptoms aren't real. This is because the doctor's comment strictly pertains to lichen sclerosus signs (what they can see), not lichen sclerosus symptoms (what you feel).

Scenario #2

A patient comes in for a routine gynecological visit. While the gynecologist is examining the vulva, they notice active signs of disease such as whiteness and clitoral phimosis and they say, “I think you might have lichen sclerosus”.

In this scenario, the patient is completely caught off guard. Since the patient had zero symptoms, they didn't think anything could be wrong. However, some patients with lichen sclerosus are actually asymptomatic. Being asymptomatic means the patient doesn't experience any symptoms, or feelings of lichen sclerosus. This is another case in which the distinction between signs and symptoms can inform your understanding of lichen sclerosus.

Scenario #3

A doctor examines a patient and tells them, “Your lichen sclerosus is in remission”. However, the patient is left confused because they still have some lichen sclerosus symptoms.

Clinical remission means no signs of active disease. However, remission doesn't guarantee you will have no more symptoms. For a full explanation of lichen sclerosus and remission, see my YouTube video where I discuss what remission and what a flare-up mean. You may still experience symptoms in remission, despite no active signs. Again, we can see that the distinction between lichen sclerosus signs and symptoms is important.

Communicate Better with Healthcare Providers

Let's face it, miscommunication is a part of life. It can happen between family, colleagues, or while you're out at the grocery store. Miscommunication is common in the medical world between patient and provider. Unfortunately, miscommunication between patient and provider has much heavier consequences than a store clerk giving you three tomatoes instead of two oranges.

This is actually a huge and complex topic – and one that I will blog more about in the future – but, in the context of this post, let's talk about how knowing the difference between signs and symptoms can help foster better communication with your doctor.

Scenario #1

Let's say, for example, you've been suffering for months with chronic itch. The doctor examines you and says everything looks normal.

Instead of accepting this and leaving without help, you can advocate for yourself and say, “I understand there are no signs of active disease. However, my symptoms have persisted for months. Can we do some tests to investigate what is going on?”

Scenario #2

The Covid-19 pandemic led to a massive shift in the way healthcare providers diagnose and treat patients. Before Covid, we would go to the doctor in person, they would examine our body, and make a diagnosis. However, with Covid, we saw a huge increase in virtual healthcare/telehealth. This means a number of folks with vulvovaginal symptoms could have to communicate with words only what is going on.

When you have to rely on words alone, it is important to know the difference between signs and symptoms. For example, a patient might tell a doctor, “I don't have any symptoms, but during a routine vulva check, I noticed a thick white patch of skin on my labia minora. What could this be”? This short statement gives the doctor a lot of insight into what could be going on, and this can help get a diagnosis quicker. Also, if that patient has LS and is asymptomatic, they wouldn't have even bothered calling unless they saw the signs of LS and were concerned.

The more clear and concise we can be in communication with our doctors, the better.

Conclusion

In sum, knowing the difference between signs and symptoms is important for better understanding lichen sclerosus and fostering good communication between you and your healthcare team.

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