When I say architecture, what comes to mind? Many of us conjure up images of gothic cathedrals, the Doric or Ionic columns from Archaic and Classical Greek architecture, or perhaps a building you often pass by on your walks. Suffice it to say, you probably think about some building or other. What probably doesn’t pop into your mind is a vulva. Yet, when you begin to engage with the lichen sclerosus community and the LS literature, you may often hear folks referring to something called ‘architectural changes’. What on earth are architectural changes and what does that have to do with lichen sclerosus? Great questions! I am here to help answer them.
It can be really overwhelming in the beginning to wrap your head around all of the medical jargon and terms out there, which is why I like to break down what each term means so you can be more informed about your body and healthcare plan. If you are interested in learning more about other LS terms such as fusing, resorption, remission, and more, check out my YouTube channel where I have videos on LS terminology.
In this post, I will discuss what ‘architectural changes’ means in the context of LS, the types of changes that occur, and what you can do to prevent future changes.
*This post is evidence-based; I draw on the medical literature to share what you need to know about anatomy and lichen sclerosus. Importantly, what I share is my interpretation of the science and data.
What on Earth are Architectural Changes with Lichen Sclerosus?
It sounds fancy and complicated but essentially the ‘architecture’ in question refers to your anatomy. Below is a diagram of a vulva. The vulva is the external genitals that you can see. This includes the mons pubis, the labia minora and majora, the glans clitoris, the clitoral prepuce, the urethral opening, the vaginal opening, the perineum, and the anus. The vagina is on the inside and extends from the vulva to the cervix. So, vulva outside, vagina inside.
LS typically does not affect the vagina. Instead, it affects the skin of the vulva. All those parts that make up your vulva are a part of your anatomy, and that is what is meant by architecture.
So what about these changes?
Our vulvas, like all parts of our body, will naturally change over time. For example, the skin on my face now has more wrinkles than it did 10 years ago. This is a natural and normal part of aging. Our vulvas can change over time too. With aging, we can lose elasticity in the vulvar skin and it can become thinned and atrophied. Again, these are changes that happen to most folks with aging.
However, not all changes are normal. Architectural changes refer to changes that occur to your anatomy that aren’t considered to be normal (such as your clitoris becoming erect when aroused, the labia tissues becoming more plump depending on your menstrual cycle, etc). These changes can be changes to the texture and color of various parts of your vulvar anatomy. These changes occur due to the high levels of inflammation caused by lichen sclerosus. See my video on what lichen sclerosus is and whether it is serious by clicking here.
Let’s review what some of those changes involve.
When the clitoral hood fuses to the clitoral glans, this is called clitoral phimosis. People with vulvar lichen sclerous may experience partial or complete fusing (Krapf et al., 2020, page 13). In either case, the fusing causes scar tissue to form over the clitoral glans, which in some but not all cases, can lead to reduced clitoral sensation. Think of touching an object while wearing thick gloves. You might be able to feel the object, but not nearly as intensely as if you felt it with your bare hands. This is what is happening with the clitoral fusing. The scar tissue acts as a barrier to the large number of nerve endings found in the clitoris, which are responsible for arousal, stimulation, and orgasm.
Clitoral phimosis can lead to reduced or complete loss of sensation, which can make sex less pleasurable. This can also impact libido. It’s not hard to understand how someone would have a low sex drive if sex wasn’t pleasurable to them.
P.S. Your doctor may also call this clitoral adhesions, clitoral scarring, and/or clitoral fusing.
P.S.S. If you have clitoral phimosis and are wondering what you can do to decrease scarring and increase sensation, subscribe to our newsletter because the next blog post will be all about clitoral health and clitoral phimosis.
Learn more about clitoral phimosis and unfusing by watching this video with Kathy featuring Dr. Rachel Rubin
Another part of our vulvar anatomy that can change due to lichen sclerosus is our labia. Specifically, your labia minora (the small, inner lips) can start to fuse (i.e., stick to) the labia majora (the hair-bearing outer lips). Early in this process, you may feel as if the skin feels ‘tacky’ and like it’s sticking to other parts of your vulva. When LS is left untreated, the fusing can continue to progress. When you are fused, your labia minora may be stuck to your labia majora; however, despite being stuck, you can still see two separate parts.
However, the fusing process can sometimes end up in resorption. This is where the two parts are no longer two separate parts but instead become one. If, for example, you run your finger along the area, you will note that your labia minora is completely flush with the labia majora. This is what happened to me; because my LS went undiagnosed and untreated for over a decade, my labia minora were completely gone (aka resorbed). This is why I called my blog and YouTube channel The Lost Labia Chronicles (because I lost my labia minora to LS).
There will be future content on what options you have if you have labial adhesions in the future, so stay tuned for those pieces of content.
P.S. Labial adhesions may also be called labial fusing and labial resorption may also be called labial agglutination. I know, it’s a mouthful!
P.S.S. If you are a visual person, check out this video I made below.
Narrowing of the Vaginal Introitus
Some folks with vulvar lichen sclerosus will experience narrowing of the vaginal introitus, which is just a fancy medical term for your vaginal opening (Krapf et al., 2020, page 13). There can be scarring at the opening, which can cause the vaginal opening to narrow. What this means is that your vaginal opening may not be as spacious as it once was, and this can make penetration painful.
An Important Caveat about Architectural Changes!
Please note, having LS doesn’t mean you are guaranteed to have anatomical changes. LS is a very individualized disease. Some folks have itching but no anatomical changes; others have no itching but may have clitoral phimosis and loss of sensation. Being diagnosed with LS does not mean these changes are guaranteed to happen to you, but it is important to be aware of them and to know what to do to help prevent changes.
Further, as you’ll learn below, early diagnosis and proper, evidence-based treatment can help slow the progression of the disease, making it less likely for changes to occur in the future.
How to Prevent Architectural Changes
I will have future content on each one of these specific architectural changes as well as what you can do if you already have anatomical changes; stay tuned!
In the meantime, let’s talk about what you can do to prevent more changes from happening (or any chance of it happening at all if you haven’t experienced any yet).
Follow Your Treatment Plan To Help Prevent Future Architectural Changes
First and foremost, it is important to follow your treatment plan and to use a treatment that has been shown to significantly reduce the inflammation caused by lichen sclerosus. Most commonly, this is ultra-potent topical corticosteroids. Ultra-potent topical steroids have demonstrated a significant reduction in inflammation and they also help slow the progression of the disease, get patients into remission, and reduce the likelihood of LS developing into vulvar cancer. Therefore, by using your treatment plan as directed, you can slow the progression of the disease, which includes things like changes to the skin texture and color. (Krapf et al., 2020, Lee, Bradford & Fischer, 2015, Mautz et al., 2021).
Use an Emollient
Second, and this is anecdotal, using an emollient can really help. When you use emollient in conjunction with your treatment plan, it can help prevent fusing. Learn out it can help prevent fusing by watching this quick, informational video.
Manage your Stress! Architectural Changes Thrive on Stress
Third, and this too is anecdotal, managing stress is important. Having been in the LS community for years, I can say by far and large stress seems to be the number one trigger for folks with lichen sclerosus. What does this mean? If you experience chronic stress, this can trigger the disease to become active. When LS is active there is a lot of inflammation, and this inflammation causes changes to the skin vulvar skin, including its texture, appearance, and color. Those changes to the texture of the skin make it more likely for it to stick, fuse, and even reabsorb. Thus, stress management is an incredibly important piece of managing your LS. Want to learn more about lichen sclerosus, stress, the nervous system, and how to manage stress by stimulating the vagus nerve? Check out this webinar I created on this topic here.
Scar Tissue Mobilization and Stretching
Lastly, scar tissue mobilization and stretching can also help prevent things from sticking together as well as encourage healthy vulvar tissue. This is something you can ask your pelvic floor physical therapist about. Of course, we will have more content on this topic in the future!
The Bottom Line
In sum, folks with lichen sclerosus *may* experience architectural changes – aka changes to the visible appearance of the vulva. This can include clitoral phimosis, labial adhesions, and narrowing of the introitus. I reviewed each of these changes and provided four tips to help prevent future/more changes down the line. Be sure to subscribe to our newsletters (links below) so you do not miss out on future posts where I discuss what you can do if you already have some of these changes.
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Krapf JM, Mitchell L, Holton MA, Goldstein AT. Vulvar Lichen Sclerosus: Current Perspectives. Int J Womens Health. 2020 Jan 15;12:11-20. doi: 10.2147/IJWH.S191200. PMID: 32021489; PMCID: PMC6970240.
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/
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.
Thank you for this post and for all you are doing. I was diagnosed in late November and have experienced some of the changes you mentioned. I can’t believe this has happened. I am incredibly grateful to have found your group, and I look forward to future posts.
I know it’s such an emotional thing to process. We are taught that these changes can happen so when it does it’s downright terrifying. Thank you so much for reading and taking the time to comment. We appreciate you! With love, Jaclyn
I was diagnosed two years ago and like a lot of LS sufferers, given steroid ointment with very vague instructions. I though because I didn’t have the burning and itching anymore I was in remission. It was only after last year’s LS seminar that I became aware of the possibilities of fusing or absorbtion. To date I have lost most of my labia minora but hopefully can keep it in check now. I’m get so frustrated that our medical fraternity are not up to date with this disease and advise correctly. Thankyou for your ongoing work and commitment to the course.
Hi, Jan. Thanks so much for reading and taking the time to comment. Yes, the definition of clinical remission is that there are no active signs of LS. Signs are things you can see; symptoms are things you can feel. Examples of signs, as you mention, are scarring/architectural changes and hypopigmentation. I hear your frustration. So much could be prevented if we got proper healthcare; this is why we at LSSN are so determined to get the proper information and education out there.
We appreciate you being part of the community. With love, Jaclyn (sorry for the two comments; my first comment was posted without me finishing my thought!
Thank you so much for all you do. I’m new to LS diagnosis and it seems my labia are getting reabsorbed very quickly (within weeks). Maybe it’s just fusion but it’s hard to tell. Do you have a provider directory? I’m trying to find an OBGYN specialist. Thank you so much for everything. <3
Hi, Charlotte. Sorry to hear you are newly diagnosed. I know, it’s a lot to process; we are here for you. We do have a list of LS providers which you can access here. We appreciate you. With love, Jaclyn