Introduction
We all know misdiagnosis is a common theme in the vulvar lichen sclerosus community. Many of us experience multiple misdiagnoses before finally getting the correct one. A common misdiagnosis that folks receive is genital herpes. In this post, we will review what you need to know about vulvar lichen sclerosus and herpes. We share what herpes is, how it is diagnosed and treated, and why some people get misdiagnosed with herpes when it is really vulvar lichen sclerosus. We share a word of caution about herpes diagnoses and share how to treat and manage symptoms if you have both vulvar lichen sclerosus and genital herpes.
Disclaimers
*This post is evidence-based; I draw on the medical literature to share what you need to know about vulvar lichen sclerosus and herpes. Importantly, what I share is my interpretation of the science and data.
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What is Herpes
Herpes is a DNA virus–its medical term is herpes simplex virus (HSV). Herpes is considered to be a sexually transmitted infection. This means you can get herpes by engaging in different types of sexual activity that involve skin-to-skin contact with someone else who is shedding the virus from their skin or secretions (Madnani, 2023; Nath et al., 2021). There are two types of herpes–HSV-1 and HSV-2. Many understand that HSV-1 causes cold sores on the mouth and HSV-2 causes sores on the genitals; however, this is not necessarily true. With oral sex being a common form of sexual activity, some folks have HSV-2 on the mouth, and some have HSV-1 on the genitals (Goldstein et al., 2023).
When infected, the virus moves into the spinal cord, where it lives for life (Madnani, 2023). This means that once infected, you have it for life. However, this does not mean you will be symptomatic for life. Some folks get one outbreak and never have one again; others have multiple outbreaks, which can be prevented with medication (Goldstein et al., 2023).
Signs and Symptoms of Herpes
Herpes symptoms on the genitals can vary. People may experience burning, severe pain, stinging, pain with sex, fever, muscle pain, and/or headache (Goldstein et al., 2023; Madnani, 2023). The pain may worsen with urination and bowel movements.
Regarding clinical signs, the classic herpes lesions will appear as a small cluster of clear pimples. These pimples eventually pop, causing open sores, which can cause a lot of pain (Goldstein et al., 2023). In severe cases, there can be labial swelling (Madnani, 2023).
Herpes sores can appear on the vulva, perianal area, groin, outer thighs, and butt (Goldstein et al., 2023).
A Pro-What?
You may have heard the term prodrome before; if not, you may think, a pro-what now? A prodrome refers to early symptoms or signs that precede the onset of a disease or a more acute phase of an illness. It can warn or indicate that a more significant or specific condition may develop.
Some people will experience itching, tingling, or flu-ish symptoms before an outbreak (Goldstein et al., 2023). This is important as taking medication early can halt or reduce the intensity of the outbreak.
Herpes Diagnosis
Ideally, herpes is diagnosed by swabbing active sores/lesions by a healthcare provider and sent to a lab for testing (ibid). A swab test is ideal as it can identify whether you have HSV-1 or 2; this is important as your healthcare provider can tailor your treatment plan accordingly. Blood tests are not as sensitive as swabs and cannot tell you which type you have if it comes back positive (Goldstein et al., 2023; Nath et al., 2021).
We cannot emphasize enough how important a swab is for a herpes diagnosis (more on this later in the misdiagnosis section). Insist on testing if a doctor gives you a herpes diagnosis based solely on the fact that you expressed having “pain” or “burning”.
Herpes Treatment
Gold standard treatment for herpes is oral antiviral medication such as acyclovir (Zovirax), valacylclovir (Valtrex), and famiciclovir (Famvir) (Goldstein et al., 2023). If you experience frequent outbreaks, your doctor may prescribe antiviral medication to take daily to help prevent outbreaks and decrease the risk of passing it to a partner (ibid; Madnani, 2023).
Goldstein et al. (2023) mention some studies showing that supplements like zinc and L-lysine may help reduce herpes outbreaks. They also note over-the-counter pain medication like acetaminophen (Tylenol) or ibuprofen (Advil). Ice and sitz baths may help, too.
Misdiagnosing Vulvar Lichen Sclerosus as Herpes
Remember when we said never to accept a clinical diagnosis of herpes without swab confirmation?
Yup! That’s because we at LSSN have heard countless stories of people telling their doctor they have pain and burning, only to be told (without the doctor even looking at the vulva) that it’s herpes. These people were given an antiviral prescription and sent home. Of course, they continued to get worse despite using antivirals.
Our very own Executive Director and President of LSSN–Kathy–had her symptoms dismissed and was told it was herpes before finally getting a vulvar lichen sclerosus diagnosis.
Of course, there is a lot of overlap between vulvar lichen sclerosus and herpes symptoms. For example, both can cause pain, pain with sex, burning, stinging, and itching. And, making the situation more complicated, many vulvovaginal conditions have these symptoms. The only way to differentiate between diagnoses is to do a clinical exam and appropriate testing when necessary. For example, herpes wouldn’t cause fusing; if fusing is present, it may signal to the clinician that something else is happening.
We said it once, and we’ll repeat it: do not accept a herpes diagnosis without a clinical exam and test.
There is absolutely nothing wrong with having herpes. However, a misdiagnosis can cause a lot of problems. For instance, they both require very different forms of treatment. Antivirals will do nothing for vulvar lichen sclerosus because it’s not a viral condition.
Can you Have Vulvar Lichen Sclerosus and Herpes?
Yes. You can have both vulvar lichen sclerosus and also have herpes, many folks do.
How to Manage Vulvar Lichen Sclerosus and Herpes?
OK. So what if you have both? How should you treat when you are having a herpes outbreak? Unfortunately, there aren’t many evidence-based guidelines on treating vulvar lichen sclerosus with herpes.
In conversation with Dr. Babb, I (Jaclyn) learned it is safe to apply Clobetasol (or your steroid) to herpes lesions. Therefore, the best practice seems to be to continue treating your LS as you normally would and take your antiviral medication as prescribed. You will want to take your anti-viral oral medication and follow your healthcare provider’s dosing instructions.
You may opt to take more baths/sitz baths throughout the day to ease pain and avoid emollients or other non-necessary topicals until the lesions/sores heal up. You can take over-the-counter pain medication such as acetaminophen (Tylenol) to help with pain. You can use a peri bottle to help with stinging pain when urinating.
Conclusion on Vulvar Lichen Sclerosus and Herpes
In sum, herpes is a common, viral, sexually transmitted infection affecting over 400 million people across the globe (Madnani, 2023). We reviewed herpes, their signs and symptoms, and how they were diagnosed and treated. We shared a common trend with herpes and misdiagnoses in the vulvar lichen sclerosus community and a word of caution. We address how to treat if you have both vulvar lichen sclerosus and herpes.
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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:
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References
Goldstein, A., Pukall, C., Goldstein, I., & Dr. Jill Krapf. (2023). When Sex Hurts. Hachette Go.
Madnani, N. (2023). Atlas of Vulvovaginal Disease in Darker Skin Types. CRC Press.
Nath, P., Kabir, M. A., Doust, S. K., & Ray, A. (2021). Diagnosis of Herpes Simplex Virus: Laboratory and Point-of-Care Techniques. Infectious Disease Reports, 13(2), 518–539. https://doi.org/10.3390/idr13020049
