Labial Fusing and Vulvar Lichen Sclerosus

Introduction

Labial fusing is something that many of us (though certainly not all) experience with vulvar lichen sclerosus (VLS). As someone who experienced it firsthand, I can tell you this can be very distressing. Labial fusing is a common topic in the VLS community; many folks have questions and concerns about it. In this post, we will talk about what labial fusing is, my (Jaclyn’s experience) with labial fusing, prevention, and what to do if you have labial fusing. 

Disclaimers

*This post is evidence-based; I draw on the medical literature to share what you need to know about lichen sclerosus and labial fusing/adhesions. 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. 

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What is Labial Fusing and Vulvar Lichen Sclerosus

First things first, some anatomy (see diagram below). Part of your vulva includes the labia majora and labia minora. The majora are the outer, hair-bearing lips (in those who keep their pubic hair); the minora are the inner lips. At the top of the vulva (where the 12 o’clock would be on a clock) is the clitoral hood and glans. 

Fusing in the context of VLS means one part of the vulva sticking to another part of the vulva. For example, the labia minora can stick to be and become ‘stuck’ to the labia majora. You can still see and feel two distinct parts of your anatomy despite being stuck. 

Sometimes, the labia minora can fuse to part of the clitoral hood. 

As fusing progresses, it can become increasingly stuck to another part of the vulva; the result for some of us can be resorption. Resorption is when one part (e.g., labia minora) becomes absorbed into another part (e.g., the labia majora) such that you can no longer feel two distinct parts of the anatomy. If you run your finger across the area, you would only feel one part, as the labia minora has become flush with the majora. 

For a more in-depth explanation of the difference between fusing and resorption, check out this video.

My Experience with Labial Fusing

I must admit, I knew very little about my anatomy until after I was diagnosed. I used the term ‘vagina’ as a catch-all term for everything ‘down there.’ If you’re familiar with my diagnosis story, you know it took me a little over 10 years to get my diagnosis (watch my story here). By the time I was finally diagnosed, I learned that I had essentially lost my labia minora; I had a lot of fusing, and most of it had resorbed into the labia majora.

I remember looking horrified for the first time. It was weird, but I didn’t really know what I was “supposed” to look like. I had never really been taught about my anatomy. I Google searched for images of vulvas, and I saw that they all had labia minora (inner lips). Mine were not only fused but completely resorbed. I unfortunately caught the fusing and anatomical changes too late. 

I remember daydreaming about having my anatomy restored, about a gracious reconstructive surgeon reaching out and offering to rebuild my labia and lost anatomy. Of course, this did not happen/has not happened, and that’s OK. For the most part, I have made my peace with this after doing grief work, therapy, and simply allowing myself the time and space to move through my feelings.

How to Prevent Labial Fusing

If you do not yet have fusing or have some fusing, you may want to know if you can do anything to decrease your chances of fusing. 

You can do a few things to decrease your chances of fusing, although none are a guarantee. The human body is too complex to guarantee these types of things. 

1. Follow your treatment plan. Treatment is designed to help slow the progression of VLS (Krapf et al., 2020)
2. Use emollient. To learn how this, in conjunction with your treatment plan, can help decrease the risk of fusing, click here to watch this video.
3. Try to gently massage the vulvar tissues to encourage blood flow and keep the tissue mobile.

What Can Be Done if You Have Labial Fusing?

If you’ve been following LSSN for some time, you know there is surgery to unfuse the clitoral hood from the glans and to open up the vaginal opening if there is scar tissue present.

You may be wondering what interventions are recommended for labial fusing and if there is a surgery to unfuse labial fusing. There are a couple of options:

Gentle Manipulation

If the skin around the clitoral hood and inner labia is sticking together, known as fusion, gently separate it twice daily using topical steroids. After an initial 3-month treatment, switch to a twice-weekly maintenance routine. Use 5% lidocaine ointment before separating the fused area, but be prepared for some stinging upon application. These recommendations are from the British Society for the Study of Vulval Disease (BSSVD) Position Statement on VLS. I know some people who will soak and then very gently try and pull apart fused parts, followed by steroids and/or copious amounts of emollient.

Surgical division of labial adhesions

Many VLS doctors do not operate unless a functional issue is present, and many do not consider labial fusion to pose a functional issue. Some providers will, however, surgically separate the labia if you are scheduled for another surgery on the vaginal opening or clitoris. That said, Bradford and Fischer (2013) discuss a procedure called the surgical division of labial adhesions. In their study, 35 patients had the surgery; the average follow-up time was two years. Of the 35 patients, 29 experienced no new refusing. The authors emphasize the importance of strategically using steroids to suppress the inflammatory process post-surgery (Bradford and Fischer, 2013).

The BSSVD position statement adds: If home treatments don’t work, some patients may need surgery to separate the fused skin around the clitoris. This procedure can be done with local or general anesthesia by manually separating the skin or using needle diathermy to uncover the clitoris. While this surgery can enhance sexual function, it’s not always necessary for every case of clitoral lichen sclerosus. The best surgical approach is uncertain, but options include steroid injections during surgery, using Surgicel post-op, and applying estrogen cream afterward. However, there’s limited evidence on the best surgical method, and there’s a risk of causing more scarring.

If you opt for number two, please know it can be challenging to find a skilled surgeon who can perform this. Please consult with our recommendations for vetting potential surgeons here.

Conclusion on Labial Fusing and Vulvar Lichen Sclerosus?

In sum, labial fusing can happen to some of us with vulvar lichen sclerosus. In this post, we reviewed techniques to reduce the risk of fusing and options if you have already fused. We recognize there is a lot of grief and mental distress that can accompany these changes, and we recommend working with a grief counselor, therapist, or support network for support and grace as you process these painful feelings.

Share your thoughts in the comments below.

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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.

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

References

BSSVD, Good Practice Statement on lichen sclerosus of the clitoris for health professionals (accessed April, 2024).

Bradford, J., & Fischer, G. (2013). Surgical Division of Labial Adhesions in Vulvar Lichen Sclerosus and Lichen Planus. Journal of Lower Genital Tract Disease, 17(1), 48–50. https://doi.org/10.1097/lgt.0b013e31824f1427

Krapf, J. M., Mitchell, L., Holton, M. A., & Goldstein, A. T. (2020). Vulvar Lichen Sclerosus: Current Perspectives. ProQuest, 11–20. https://doi.org/10.2147/IJWH.S191200