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New Research on Pregnancy and Vulvar Lichen Sclerosus

New Research on Pregnancy and Vulvar Lichen Sclerosus

Introduction

For some time, the medical community believed that vulvar lichen sclerosus (VLS) primarily affected children and post-menopausal people. This meant younger adults were often left out of VLS conversations and research. Thanks to recent advances in VLS research and loud advocates for the VLS community, we now know people of all ages can be affected by VLS. At LSSN, we noticed a trend amongst newly diagnosed younger adults–a worry about pregnancy and vulvar lichen sclerosus. And we get it: a VLS diagnosis can be scary if you are pregnant or thinking about getting pregnant, especially since there is not a lot of research and information on this topic.

We published two blog posts to help raise awareness about pregnancy and vulvar lichen sclerosus and to help bring more information on this topic to our community. One reviewed what the science said about pregnancy and VLS; another was a post from a beautiful LS warrior sharing her VLS and pregnancy story

Today, we share the findings from a new study on pregnancy and vulvar lichen sclerosus, aiming to bring more awareness and education on this topic to our beautiful community.

Disclaimers

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

**The information contained in this blog post is up-to-date at the time of publication. 

***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.

New Study on Pregnancy and Vulvar Lichen Sclerosus Overview

To date, there have been few studies investigating the effects of pregnancy on vulvar lichen sclerosus. Further, the few studies we did have were relatively small (the most extensive study looked at 33 pregnancies). Motivated by this, Shaffer et al. (2023) conducted a retrospective, cross-sectional online study to examine different factors that may influence VLS in pregnancy. A retrospective cross-sectional online survey is a survey conducted online where people are asked to remember and talk about past events or experiences at a single time.

Image of a person with brown skin and a light purple dress with a pregnant belly and graphic design images of research papers.

The authors opened a call for participants through Facebook and support groups. People aged 18-50 who were diagnosed with VLS before getting pregnant could be included in the study. The study included 134 people with VLS with a combination of 206 pregnancies. The average age of participants was 35 years old, and the average age at which symptoms began was 22.

The online survey included yes/no, multiple choice, and free-text responses. Participants answered demographic questions and questions relating to before, during, and after pregnancy. 

Symptoms Before, During, and After Pregnancy

One question we hear a lot at LSSN is, “Will my VLS symptoms get worse if I get pregnant?” This is a super valid concern. VLS symptoms can be downright awful. The thought of them getting worse during pregnancy and potentially dealing with other pregnancy-related symptoms like nausea and fatigue is certainly worrisome.

So, in the online study of 134 people with VLS, what were the major trends with pregnancy and vulvar lichen sclerosus?

Overall, symptoms and architectural changes decreased during pregnancy and gradually increased postpartum.

Specifically, 36% of people saw no change in symptoms, and 44% saw a decrease in symptoms during pregnancy; a gradual increase of symptoms postpartum was reported in 60% of participants (Shaffer et al., 2023).

But Wait…Why Do Symptoms Often Improve in Pregnancy and Get Worse Postpartum 

Well, the truth is, we don’t exactly know. 

We do have some guesses, though; let’s start with why symptoms may improve in pregnancy. The biggest guess is that it has something to do with hormones. Shaffer et al. (2023) note that the symptoms of itch tend to be more noticeable in low-estrogen states (e.g., in childhood and after menopause). Since estrogen increases in pregnancy, the authors speculate this could be one of the reasons symptoms decrease with pregnancy and VLS.

But why do symptoms get worse postpartum? I (Jaclyn) have asked several healthcare providers about this question and have heard a few guesses. One could be the change in hormones postpartum. The other, more common guess, is that parenthood is hard. Between the lack of sleep, changing diapers, and managing all the challenges that can come with a child, it can be easy to forget to take care of ourselves, forget to use our medication, emollients, etc. And that’s OK. Give yourself grace. Birthing and raising a child is hard. Reach out to your community for support during those months, and remember it’s OK to prioritize and take care of yourself, too.

Use of Topical Steroids During Pregnancy

Another concern for folks with VLS who are considering getting pregnant is using their treatment plan during the pregnancy. While the gold standard treatment for VLS is an ointment applied to the skin, many have very valid concerns and fears about the medication's safety for them and the baby. 

The study showed an overall trend of more people choosing not to use topical corticosteroids during pregnancy. Specifically, only 39% of participants chose to be treated with topical corticosteroids during pregnancy, and 65% chose to resume treatment postpartum. Healthcare providers advised 17% of patients not to treat during pregnancy; it is unclear why the others chose not to be treated (ibid).

Graphic design images of a tube and jar of ointment and an prescription pad next to it.

The authors note topical corticosteroid use is safe during pregnancy (ibid). They highlight a systematic review study that showed no association between using topical corticosteroids during pregnancy and negative pregnancy outcomes (Chi et al., 2015). Another smaller study by Nguyen et al. (2018) followed 33 pregnancies. Those who were compliant with their steroid treatment had minor complications, and their LS symptoms were well-managed.

Further, the authors (Shaffer et al. 2023) emphasize the fact that the total body surface area (BSA) that we apply our medication to makes up less than 2% of our entire body area, and the recommended maintenance dose is 1-3x per week, meaning there is not a lot of medication being used.

For a risk versus benefits of using steroids in pregnancy with VLS, see our other pregnancy post here.

Mental Health with Pregnancy and Vulvar Lichen Sclerosus

The authors noted that 50% of participants reported anxiety relating to delivery, specifically because of VLS. The study also found higher rates of postpartum depression–over twice the 14% international average reported in the literature. 

Mode of Delivery

This study, along with others in pregnancy and vulvar lichen sclerosus, found that VLS did not impact the mode of delivery. Of the 206 pregnancies in the study, 59% had a spontaneous vaginal birth, and 23% had a planned cesarean delivery (Shaffer et al., 2023). Other delivery modes included vacuum-assisted delivery, forceps-assisted delivery, and unplanned cesarean delivery (ibid).

Having VLS influenced 10% of participants to opt for a cesarean delivery.

Tearing with Pregnancy and Vulvar Lichen Sclerosus

Out of those who had a vaginal delivery, 71% reported ‘normal’ levels of tearing during delivery, and 12% reported a significant perineal tear involving the anal skin (ibid).

Only 31% of participants had a conversation with their healthcare providers about perineal massage to help reduce tears during pregnancy.

How to Reduce Likelihood of Tearing During Delivery

Perineal massage is a technique where a pregnant person or their partner gently massages and stretches the perineum, which is the area of skin and muscle between the vagina and the anus. The goal is to make the perineum more flexible and stretchy to reduce the likelihood of tearing or the need for an episiotomy during delivery. It's like gently stretching and massaging the area to help it become more flexible and less likely to tear when the baby is born. A physical therapist can show you how to use this technique on the pelvic floor. 

Graphic design image of a person with blond hair in a ponytail giving birth which a scrub nurse and a person holding their hand.

Shaffer et al. (2023) recommend perineal massage at 34 weeks and during the second stage of labor, applying warm compresses during the second stage of labor, and avoiding episiotomy–a surgical cut made in the perineum–when possible.

Education

OK, let’s talk about one of our favorite topics here at LSSN–education. What kind of education did our pregnant VLS community receive from their healthcare providers?

The authors noted an overall trend whereby most people did not receive education about VLS and pregnancy. Specifically, 92% of participants reported getting inadequate information about VLS and pregnancy, 92% reported a lack of education about delivery and VLS, and 94% about breastfeeding and VLS (ibid).

I don’t know about you, but those are incredibly high numbers for us! Especially if you consider that 50% of participants reported anxiety relating to VLS and delivery. Perhaps that percentage could have decreased if they had received proper education and counseling from healthcare providers at the beginning of their pregnancy planning. 

Takeaway Points

One thing that struck me (Jaclyn) in reading this study was the importance of awareness and education for people with VLS who are pregnant/thinking about getting pregnant. We need better provider education so they feel comfortable counseling and following pregnant people with VLS. This would include counseling on treating with steroids, delivery planning, teaching and instruction perineal massage to help reduce the likelihood of perineal tears and managing anxiety and postpartum depression. We need more awareness that VLS affects people ages 18-50 and that it can impact pregnancy to provide better support to this group of people.

Conclusion on Updates on Pregnancy and Vulvar Lichen Sclerosus

In sum, there has been little research on pregnancy and vulvar lichen sclerosus in the past. In today’s post, we reviewed a new study published in 2023 to update the community on new findings and insights into pregnancy and VLS. The study showed symptoms decreased during pregnancy (but increased postpartum), use of topical steroids decreased during pregnancy, mode of delivery wasn’t impacted, and 50% of participants reported anxiety about VLS and delivery. We shared information about steroid use, shared evidence-based suggestions to reduce tearing with delivery, and made a call for more patient education and awareness.

Share your pregnancy and VLS experiences in the comments below.

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Reach Out to Me

You can reach me via email or phone whether you're considering booking a support call, have a quick question, or want to share something related to my content.

Email: Jaclyn@lostlabia.com

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Support Resources

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.

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

References

Chi, C.-C., Wang, S.-H., & Kirtschig, G. (2016). Safety of Topical Corticosteroids in Pregnancy. JAMA Dermatology, 152(8), 934. https://doi.org/10.1001/jamadermatol.2016.1009

Nguyen, Y., Bradford, J., & Fischer, G. (2018). Lichen sclerosus in pregnancy: A review of 33 cases. Australian and New Zealand Journal of Obstetrics and Gynaecology, 58(6), 686–689. https://doi.org/10.1111/ajo.12812

Shaffer, A. B., Cigna, S. T., Pope, R., & Krapf, J. M. (2023). Pregnancy, parturition and postpartum considerations among patients with vulvar lichen sclerosus: A retrospective cross‐sectional online survey. BJOG: An International Journal of Obstetrics and Gynaecology. https://doi.org/10.1111/1471-0528.17601

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