Introduction

We commonly get emails with the subject line reading, “Clobetasol isn’t working for lichen sclerosus…now what?” And we get it; we’ve been there too. But we want you to know there are options. In this post, we review what Clobetasol is and how long it takes to work. This section is particularly important because sometimes folks do not use Clobetasol long enough to see results because they did not receive adequate education on their medication. After, we review important questions and things to explore with your healthcare provider. We share a number of alternatives to Clobetasol, both steroidal and non-steroidal, and provide advice for approaching your doctor about changing your treatment plan. Finally, we review refractory vulvar lichen sclerosus and three options to help. 

One of the scariest things with a chronic condition is feeling like you don’t have any options. This can feel hopeless and bleak. We hope this post can help alleviate some of those feelings by showing you many options to help manage and treat VLS.

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

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

What is Clobetasol?

Clobetasol is a medication that typically comes in either cream or ointment. It is a topical medication, meaning it is applied to the skin. In the context of vulvar lichen sclerosus (VLS), it is applied to the vulvar skin. Topical clobetasol belongs to a class of medications called topical corticosteroids. Topical corticosteroids work by calming the immune response and inflammation in the vulva. Calming the immune response and inflammation helps restore health to the vulvar tissues, which in turn can help alleviate symptoms like itch, fissuring, and pain.

Clobetasol is considered the gold standard and the first line for VLS treatment. This means in most cases, it is the first thing your healthcare provider will prescribe for VLS.

The reason they are the first-line treatment is because they are unmatched in their ability to calm the overactive local immune response in the vulva and reduce vulvar inflammation compared to other treatments and experimental therapies (Bracco et al., 1993; Bornstein et al., 1998; Funaro et al., 2014; Goldstein et al., 2011; Krapf et al., 2020, Lee et al., 2015; Mautz et al., 2021; Terras et al., 2014).

Learn more about the side effects and risks versus benefits of using topical corticosteroids for VLS here.

Clobetasol Isn’t Working For Vulvar Lichen Sclerosus: What Can I Do?

Don’t Panic

OK. First and foremost, take a big breath. After learning about Clobetasol, it can be scary if the gold standard, first-line treatment is not working for you. However, many evidence-based options are available to help you manage. Therefore, even if Clobetasol does not work for you, there are options. In what follows, we will assess whether Clobetasol is working or not, questions you and your healthcare provider should explore, alternatives to Clobetasol, and what to do if you have refractory VLS.

Setting Expectations: How Long Does it Take for Clobetasol to Start Working?

First, it’s important to set realistic expectations on how long it can take for clobetasol to work for VLS. Why do I say this? Well, many people with VLS receive little to no counseling and guidance on their VLS treatment plan. Therefore, some folks assume that Clobetasol should start working immediately, with dramatic results after a few weeks (this was me). However, this is not the reality of how clobetasol will work in most people.

That is, it can take anywhere from 3-6 months for clobetasol to really start working to the extent that you notice improvements to the skin and symptoms (Kirtschig, 2016; Renaud-Vilmer et al., 2004). For me, it took about 3 months to start to feel a little better, 6 months to notice a big improvement in my symptoms and quality of life, and 9 months for my gynecologist to tell me my VLS was in clinical remission.

Proper and Consistent Application Matters

Clobetasol can take a few months to start to work, so if you’re a few weeks in and thinking it isn’t working, you may want to stick it out (assuming you aren’t having any adverse side effects; that’s a different story and requires you see a healthcare provider ASAP).

On the topic of sticking it out, how you apply it matters! There are optimal recommendations for application that may increase the likelihood of your medication working properly and reducing side effects. 

Recommendations for proper application can be found in this blog post.

Of course, consistency matters here, too. Follow your healthcare provider’s dosing instructions. Ideally, if that’s daily for a month, you would apply daily, not a few times throughout the month.

OK, So You’ve Been Using Clobetasol for 3-6+ Months Consistently, But It’s Not Working. Now What?

Other Corticosteroids

Alright. You’ve been using Clobetasol consistently per your healthcare provider’s instructions for 3-6+ months, but you still have not seen any improvements to your VLS. First, I just want to acknowledge that this is incredibly frustrating and I’m sorry you have suffered so long.

At this point, it merits booking an appointment with your healthcare provider to discuss switching up your treatment plan. The truth is, not everyone will respond perfectly to Clobetasol, but the good news is that there are many other steroid options that you may benefit from. Bodies are unique and complex; therefore, one medication may work for one person and not another. Sometimes, trial and error is involved in finding the steroid that works for you.

There are several steroids on the market that vary in potency that you can explore with your doctor.

See this link for the steroid potency ladder.

Calcineurin Inhibitors

Another option if other topical corticosteroids similarly do not work is topical calcineurin inhibitors. Topical calcineurin inhibitors (e.g., Pimecrolimus, Tacrolimus) are another medication in cream or ointment for the skin. They work similarly to steroids in that they help calm an overactive immune response and inflammation. However, they are not steroids.

Overall, the studies are pretty promising and show that topical calcineurin inhibitors can be a good option for folks (Corazza et al., 2021). If Clobetasol/steroids do not work for you, these may be a good option for treating and managing your VLS. Talk to your healthcare provider about switching to calcineurin inhibitors, and if you want to learn more about calcineurin inhibitors, check out this post.

Talking to Your Doctor About Changing Your Medication

Explain to them that you have been using your treatment according to their directions, following best practices consistently for 6+ months, and have seen no improvements in your symptoms. Consider printing the steroid potency chart above and share that you want to try a different steroid. If your healthcare provider is reluctant, you may also print out and share studies showing different steroid types to be effective in treating and managing VLS. For example, you can share this paper, which shows that topical mometasone is just as effective at treating VLS as clobetasol.

A helpful paper to show your healthcare provider if you want to try topical calcineurin inhibitors is this one. In this study, Goldstein et al. (2011) tested Clobetasol (a steroid) and Pimecrolimus (a calcineurin inhibitor) on two groups without them knowing which they received. Both treatments reduced inflammation, but Clobetasol performed slightly better. They suggest Clobetasol as the first choice and Pimecrolimus as the second for those who can’t use steroids (either because they do not work, have adverse effects, or personal choice). 

What if Clobetasol Used to Work for Me But No Longer Does

I (Jaclyn) have heard of a handful of cases where people who once had success with clobetasol no longer found it helpful. In each of these cases, the providers simply swapped clobetasol for another steroid, and each person found relief again.

OK, I Tried Changing my Steroid and/or Tried Calcineurin Inhibitors, and Still Nothing. What Gives?

Is the Diagnosis Correct?

If you have a biopsy-confirmed case of VLS, this question doesn’t apply (skip to the next section). However, if you were diagnosed clinically (i.e., by visual examination), it is possible the diagnosis was incorrect. Especially in cases where the diagnosis was not made by a board-certified healthcare provider specializing in vulvar skin conditions.

People often get misdiagnosed multiple times before getting the correct diagnosis of VLS. However, I (Jaclyn) know many instances where people who were clinically diagnosed with VLS used steroids properly and consistently for months, only to get worse/not feel better, and it turned out they never had VLS. One case in particular that stood out was an individual who tried multiple steroids and calcineurin inhibitors over 10 months. Despite all treatments, her case never improved and got worse. Finally, she decided to board a plane and see a vulvar specialist. Turns out she didn’t have VLS but a very bad case of stubborn, embedded yeast. 

Is there a Secondary Condition?

Another thing I (Jaclyn) see is cases where the individual does indeed have VLS, but they are also dealing with a secondary condition but treating it as if it was only VLS. If you have been using steroids/calcineurin inhibitors for 6+ months properly and consistently but are still experiencing pain, pain with sex, and/or itch, you may have a secondary condition. For example, you could have allergic or irritant contact dermatitis, a yeast infection (vaginal and/or vulvar), nerve pain, bacterial vaginosis, a UTI etc. Getting the proper diagnosis of all conditions is important. If you have a secondary condition, they will likely require a different treatment and care protocol. Therefore, if Clobetasol isn’t working, you may want to ask your healthcare provider if there is a secondary condition causing continued symptoms despite properly treating VLS. 

Do you Have Refractory Vulvar Lichen Sclerosus?

Refractory (or recalcitrant) vulvar lichen sclerosus means VLS that is non-responsive to traditional gold-standard treatments.

If you have refractory VLS, there are options for you. However, this will require working with a specialist. A primary care physician, general practitioner, and even some gynecologists who do not take a special interest in vulvar skin conditions may not be able to administer some of the options for refractory VLS. 

Option 1

Intralesional steroid injections. This involves your healthcare provider numbing the vulvar skin and injecting the steroid medication directly into the lesions. This allows the medication to reach the targetted area and penetrate through layers of thickened skin. Kirtschig (2016) notes improvement in people with refractory VLS in 80% of patients after 4 injections.

Option 2

CO2 fractional laser may be another option for folks with refractory VLS. Lee et al. (2015) found CO2 fractional laser to be beneficial to the 5 participants in the study who had refractory VLS. The 5 individuals had multiple rounds of CO2 fractional laser sessions and treatment with topical corticosteroids. After 3-5 rounds, the participants could get into remission and maintain remission by simply using topical corticosteroids. Another study by Peterson et al. (2005) found similar results. 

Option 3

Systemic (i.e., oral medication taken by mouth) medication such as prednisone, methylprednisolone, prednisolone, oral triamcinolone, and other systemic steroids may be used in cases of refractory VLS (Hargis et al., 2024). Be sure to discuss these options and their risks versus benefits with your healthcare provider.

Conclusion

In sum, if your clobetasol isn’t working for lichen sclerosus, know there are options. In this post, we reviewed some important points regarding the effectiveness of Clobetasol, including having realistic expectations on how long it can take to see results, important questions to discuss with your healthcare provider if you are not seeing results after 3-6+ months, as well as different treatment options you can try instead of clobetasol.

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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:

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For a more detailed list of free and paid support resources, check out my LS resources page here.

Sources Cited

Bracco, G.L.; Carli, P.; Sonni, L.; Maestrini, G.; De Marco, A.; Taddei, G.L.; Cattaneo, A. Clinical and histologic effects of topical treatments of vulval lichen sclerosus. A critical evaluation. J. Reprod. Med. 1993, 38, 37–40

Corazza M, Schettini N, Zedde P, Borghi A. Vulvar Lichen Sclerosus from Pathophysiology to Therapeutic Approaches: Evidence and Prospects. Biomedicines. 2021; 9(8):950. https://doi.org/10.3390/biomedicines9080950

Funaro, D.; Lovett, A.; Leroux, N.; Powell, J. A double-blind, randomized prospective study evaluating topical clobetasol propionate 0.05% versus topical tacrolimus 0.1% in patients with vulvar lichen sclerosus. J. Am. Acad. Dermatol. 2014, 71, 84–91. 

Goldstein, A.T.; Creasey, A.; Pfau, R.; Phillips, D.; Burrows, L.J. A double-blind, randomized controlled trial of clobetasol versus pimecrolimus in patients with vulvar lichen sclerosus. J. Am. Acad. Dermatol. 2011, 64, e99–e104.

Hargis, Abby; Ngo, Madeline; Kraus, Christina; Mauskar, Melissa. Systemic Therapy for Lichen Sclerosus: A Systematic Review. Journal of Lower Genital Tract Disease 28(1):p 84-90, January 2024. | DOI: 10.1097/LGT.0000000000000775

Kirtschig G. Lichen Sclerosus-Presentation, Diagnosis and Management. Dtsch Arztebl Int. 2016 May 13;113(19):337-43. doi: 10.3238/arztebl.2016.0337. PMID: 27232363; PMCID: PMC4904529.

Krapf JM, Mitchell L, Holton MA, Goldstein AT. Vulvar Lichen Sclerosus: Current Perspectives. Int J Women’s Health. 2020 Jan 15;12:11-20. doi: 10.2147/IJWH.S191200. PMID: 32021489; PMCID: PMC6970240.

More Citations

Lee A, Bradford J, Fischer G. “Long-term Management of Adult Vulvar Lichen Sclerosus: A Prospective Cohort Study of 507 Women”. JAMA Dermatol. 2015 Oct;151(10):1061-7. DOI: 10.1001/jamadermatol.2015.0643. PMID: 26070005. https://pubmed.ncbi.nlm.nih.gov/26070005/ 

Lee, A. and G. Fisher (2018). “Diagnosis and Treatment of Vulvar Lichen Sclerosus: An Update for Dermatologists”. American Journal of Clinical Dermatology. DOI/10.1007/s40257-018-0364-7 https://pubmed.ncbi.nlm.nih.gov/29987650/ 

Lewis FM, Tatnall FM, Velangi SS, Bunker CB, Kumar A, Brackenbury F, Mohd Mustapa MF, Exton LS. British Association of Dermatologists guidelines for the management of lichen sclerosus, 2018. Br J Dermatol. 2018 Apr;178(4):839-853. doi: 10.1111/bjd.16241. PMID: 29313888. 

Mautz TT, Krapf JM, Goldstein AT. Topical Corticosteroids in the Treatment of Vulvar Lichen Sclerosus: A Review of Pharmacokinetics and Recommended Dosing Frequencies. Sex Med Rev. 2021 Jul 2:S2050- 0521(21)00033-0. doi: 10.1016/j.sxmr.2021.03.006. Epub ahead of print. PMID: 34226161.

Peterson, C. M., Lane, J. E., & Ratz, J. L. (2004). Successful Carbon Dioxide Laser Therapy for Refractory Anogenital Lichen Sclerosus. Dermatologic Surgery, 30(8), 1148–1151. https://doi.org/10.1111/j.1524-4725.2004.30343.x

Renaud-Vilmer C, Cavelier-Balloy B, Porcher R, Dubertret L. Vulvar Lichen Sclerosus: Effect of Long-term Topical Application of a Potent Steroid on the Course of the Disease. Arch Dermatol. 2004;140(6):709–712. doi:10.1001/archderm.140.6.709

Smith YR, Quint EH. Clobetasol propionate in the treatment of premenarchal vulvar lichen sclerosus. Obstet Gynecol. 2001 Oct;98(4):588-91. doi: 10.1016/s0029-7844(01)01496-x. PMID: 11576572.

Terras, S.; Gambichler, T.; Moritz, R.K.C.; Stücker, M.; Kreuter, A. UV-A1 Phototherapy vs Clobetasol Propionate, 0.05%, in the Treatment of Vulvar Lichen Sclerosus. JAMA Dermatol. 2014, 150, 621.