Introduction

Vulvar lichen sclerosus (VLS) is a chronic condition that affects many individuals, yet it remains under-discussed and often misunderstood. This blog post aims to provide clarity on VLS symptoms, including how they present, what might trigger flares, and why symptoms vary from person to person. Understanding these aspects is crucial for better self-management and communication with healthcare providers. Whether you are newly diagnosed or seeking more information about VLS, this guide will walk you through the key points to help you better navigate this condition.

Disclaimers

*This post is evidence-based; I draw on the medical literature to share what you need to know about vulvar lichen sclerosus and VLS symptoms. Importantly, what I share is my interpretation of the science and data.

**If this post is helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today, volunteer with us, or share our posts in your support groups.

What Are Symptoms?

We explain symptoms as physical sensations that you can feel in your body. For example, symptoms of disease (in general) could be tingling, stabbing, throbbing pain, a dull ache, dizziness, muscle spasms, etc. 

In contrast, clinical signs are things that can be seen. For example, clinical signs of a disease (in general) could include blood pressure, heart rate, rash, an ulcer, or bruising.

Think about it this way: I can feel itchy, but people can’t see the itch on me. They may be able to infer from scratch marks on my skin that I may be experiencing an itch, but for the most part, people can’t see the itch on my body, even though I feel the itch.

Just like you can describe the pain you’re experiencing, a doctor can’t actually see that pain. However, they might notice signs that suggest pain, such as a fissure. Since they know fissures can be painful, they can reasonably assume that you’re experiencing pain based on what they observe.

To learn more about the difference between signs and symptoms, check out this YouTube video I made on the topic below. It explains why the difference matters when it comes to vulvar lichen sclerosus.

What Are the Symptoms of Vulvar Lichen Sclerosus?

Vulvar lichen sclerosus (VLS) symptoms can include:

• Itch, which may be mild and sporadic or chronic and severe
• Burning pain
• Stinging pain
• Soreness
• Pain with sex (tearing with sex, burning pain with sex, etc.)
• Decrease in clitoral sensation or loss of clitoral sensation (difficulty with orgasm)
• Dysuria–discomfort with urination
• Constipation (for folks with perianal involvement; very common in children with VLS)
• Asymptomatic (i.e., no symptoms)

(Cooper et al., 2004; Corraza et al., 2021; Fergus et al., 2020; Kirtschig, 2016; Krapf et al., 2020; Kumar et al., 2022; Singh, Nilanchali, and Prafull Ghatage; Smith et al., 2023).

Do you need to have ALL the symptoms of Vulvar Lichen Sclerosus?

It’s important to know that you do not need to have every symptom to have VLS. We’ve spoken with folks who question their diagnosis because they do not have any itch or they itch but have pain. 

While there are no studies on this specifically, there are different buckets of symptoms regarding VLS. What we mean by this is some folks,

• Have only an itch component
• Have only a pain component
• Have a pain and sexual health component
• Have a combination of the above.

A cross-section study by Krapf et al., 2022, showed that people in the age bracket of 18-50 commonly experienced sexual health symptoms, including tearing and pain with sexual activity.

My (Jaclyn) symptoms began in my early 20s and were almost exclusively sexual health symptoms. In my late 20s/early 30s it was sexual health and pain symptoms. The itch was never a big thing for me, though I did start to get a bit itchy around the time of my diagnosis. Conversely, Kathy’s (our founder and executive director) symptoms were almost exclusively itch-related.

VLS is an individualized condition; symptoms will vary in type, frequency, and intensity from person to person. Someone else’s symptoms differing from your own does not invalidate your diagnosis or your experience. 

What Causes Vulvar Lichen Sclerosus Symptoms?

The truth is, we do not fully understand all the ins and outs of VLS yet. Hopefully, more research over the next few years will shed more light on how VLS manifests, progresses, and can be halted.

But, for now, let’s share what we do now about what causes VLS symptoms from some of VLS experts.

What Causes Vulvar Lichen Sclerosus Symptoms – An Expert Shares

In a podcast interview with Dr. Jill Krapf, she notes that essentially, our body reacts to a protein or collection of proteins at the bottom layer of the vulvar skin. The reaction is one of defense, as the body mistakenly sees this protein/proteins as not part of our body–like an invader or an energy. Thus, the body launches an inflammatory response to eliminate what it perceives as a dangerous invader. In the process, these high levels of inflammation cause changes to our skin. For example, our skin (particularly in the mid-top layer) thickens; as a result, our skin loses elasticity and is prone to cracking, tearing, and fissuring. It can become sticky, causing it to stick to and fuse (scaring) to other parts of the vulva (e.g., the labia minora fusing to the labia majora). The fusing (scaring) and fissuring/tearing can lead to pain. Furthermore, thick skin is itchy skin.

Watch the video here.

To learn more about what causes VLS in general and the potential risk factors for VLS, see below.

What Causes Symptoms to Flare – According to Dr. Babb

According to Dr. Babb, a flare is when your symptoms suddenly increase and worsen. For example, let’s say I normally itch and I would rate it level 4 intensity and it normally ebbs and flows throughout the week. With a flare, all of a sudden, the itch spikes in intensity and I would now rate it a 9 in intensity and notice that it is non-stop. 

Dr. Babb shares several things that can cause VLS symptoms to flare (i.e., to increase in intensity and frequency suddenly). For example,

• Changes to the immune system (e.g.., illness, surgery, or menstruation),
• Changes in stress levels (e.g., loss of job, loss of a person, a big move, etc.)
• And environmental factors (e.g., medication or diet).

Dr. Babb notes this list is not exhaustive. 

Watch the video on what causes flares and how to manage them below.

Conclusion on What Are the Symptoms of Vulvar Lichen Sclerosus

In sum, living with VLS can be challenging, but understanding your symptoms and potential triggers is a vital step toward effective management. VLS symptoms are highly individualized, and no two experiences are the same. By recognizing the difference between signs and symptoms, learning about the underlying causes of flares, and acknowledging the diversity of symptom patterns, you can better advocate for your care and well-being. Remember, your experience is valid, even if it doesn’t align perfectly with someone else’s. Stay informed, seek support, and work with your healthcare provider to develop a management plan tailored to your unique needs.

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Reach Out To Me

Whether you are debating booking a support call with me, have a quick question, or want to share something related to my content, I can be reached via:

Email: Jaclyn@lostlabia.com

DM: @thelostlabiachronicles on Instagram, Facebook, and TikTok.

Support Resources

FREE Lichen Sclerosus Virtual Meetup hosted by myself and Kathy of Lichen Sclerosus Podcast – sign up here.

Feel free to book a 1:1 call with me if you struggle with grief and emotions. Simply click this link to learn more about lichen sclerosus peer support calls.

LSSN Membership – sign up here.

For our resources page, click here.

References

Cooper, S. M., et al. “Does Treatment of Vulvar Lichen Sclerosus Influence Its Prognosis?” Archives of Dermatology, vol. 140, no. 6, 1 June 2004, https://doi.org/10.1001/archderm.140.6.702.

Corazza, Monica, et al. “Vulvar Lichen Sclerosus from Pathophysiology to Therapeutic Approaches: Evidence and Prospects.” Biomedicines, vol. 9, no. 8, 3 Aug. 2021, p. 950, https://doi.org/10.3390/biomedicines9080950.

Fergus, Kirkpatrick B., et al. “Pathophysiology, Clinical Manifestations, and Treatment of Lichen Sclerosus: A Systematic Review.” Urology, vol. 135, 1 Jan. 2020, pp. 11–19, www.sciencedirect.com/science/article/pii/S0090429519308702#tbl0002, https://doi.org/10.1016/j.urology.2019.09.034.

Kirtschig, Gudula. “Lichen Sclerosus—Presentation, Diagnosis and Management.” Deutsches Aerzteblatt Online, vol. 113, no. 19, 13 May 2016, https://doi.org/10.3238/arztebl.2016.0337.

Krapf, Jill M., et al. “Presenting Symptoms and Diagnosis of Vulvar Lichen Sclerosus in Premenopausal Women: A Cross-Sectional Study.” Journal of Lower Genital Tract Disease, vol. Publish Ahead of Print, 6 May 2022, https://doi.org/10.1097/lgt.0000000000000679. Accessed 19 May 2022.

—. “Vulvar Lichen Sclerosus: Current Perspectives.” ProQuest, 2020, pp. 11–20, www.proquest.com/docview/2340011528?accountid=15324&pq-origsite=primo, https://doi.org/10.2147/IJWH.S191200.

Kumar, Kajal S., et al. “Comparison of lichen sclerosus in boys and girls: A systematic literature review of epidemiology, symptoms, genetic background, risk factors, treatment, and prognosis.” Pediatric dermatology 39.3 (2022): 400-408.

Singh, Nilanchali, and Prafull Ghatage. “Etiology, Clinical Features, and Diagnosis of Vulvar Lichen Sclerosus: A Scoping Review.” Obstetrics and Gynecology International, vol. 2020, 21 Apr. 2020, pp. 1–8, https://doi.org/10.1155/2020/7480754.