My last blog post looked at architectural changes and lichen sclerosus. This week, we dive even deeper into this topic. Specifically, I am discussing the clitoris, clitoral health, and what you can do if you have any of these clitoral problems as a component of your LS. If you missed last week’s post, you will want to go back and read that first as this post builds on that foundation.
This post is evidence-based; I draw on the medical literature to share what you need to know about clitoral health and lichen sclerosus. I will be sharing my personal journey later in the year.
Quick Recap on Architectural Changes
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?
Architectural changes – in the context of lichen sclerosus – essentially mean changes to the look, texture, and color of the vulvar skin that occurs due to high levels of inflammation in the basement layer of the vulvar skin. (Krapf et al., 2020). Some examples include clitoral phimosis, labial adhesions, and Introitus stenosis (ibid).
Those names are super fancy and intimidating, but I break them down in last week's post, so be sure to read that first.
Clitoral phimosis (AKA clitoral adhesions or clitoral scarring) occurs when the hood of the clitoris (the prepuce) fuses and sticks to the glans clitoris (Myers et al., 2022). Having lichen sclerosus is a risk factor for having clitoral phimosis, as the inflammation from lichen sclerosus causes significant changes to the texture or the skin making it more likely to crack, fissure, and fuse/adhere to other parts of the vulva. However, that doesn’t mean that having lichen sclerosus guarantees you will have clitoral phimosis. I know folks who have had vulvar lichen sclerosus for over 20 years and never developed clitoral phimosis.
Clitoral phimosis is graded by severity and is based on how much of the glans clitoris can be seen upon visual examination. To perform this clinical examination, your doctor will gently attempt to retract (i.e., pull back) the clitoral hood. If there is no phimosis, the skin of the clitoral hood should pull back easily, without resistance, to reveal the glans clitoris and corona. The corona is “…a ridge of tissue between the glans and the clitoral body that is found under the prepuce…” (Myers et al., 2022, 3).
There are four grades of severity – no phimosis, mild phimosis, moderate phimosis, and severe phimosis.
If you are a visual person and want to see images of the different grades of clitoral phimosis, I highly recommend this blog post by Dr. Rachel Rubin. In the middle of the post are images of real vulvas with different grades of phimosis.
Risk Factors for Clitoral Phimosis
By the way, clitoral phimosis doesn’t just happen to folks with lichen sclerosus. In the Myers et. al 2022 study, the authors found that out of hundreds of vulva pictures taken from folks with vulvas who presented at their sexual medicine clinic, 23% of those patients had mild to moderate clitoral phimosis. Not all the patients involved in that 23% had lichen sclerosus.
What else can cause clitoral phimosis? What increases your risk of clitoral phimosis? According to a study by Dr. Leen Aerts, et al., the following are risk factors:
- History of sexual pain
- Yeast infections
- UTIs (urinary tract infections)
- Trauma to the vulva
- Lichen sclerosus
- Low-calculated free testosterone
- + other sexual dysfunctions such as persistent genital arousal disorder
(Aerts et al., 2018).
More recently, two more risk factors have been established, which are:
- Long-term oral contraception (i.e., oral birth control pills)
(Myers et al., 2022, 5).
OK, so we know what clitoral phimosis is and we know the risk factors. Now let’s talk about what can happen if you have LS and clitoral phimosis!
The Clitoris, Smegma, and Keratin Pearls
Remember how I said above if you have clitoral phimosis you may not be able to fully retract the hood of the clitoris to expose the glans clitoris and the corona? If you have clitoral phimosis this creates a closed-off space (an entrapment or closed compartment) between the hood and the glans clitoris. Consequently, this can result in the build-up of something called smegma.
Smegma – gotta love that name – is essentially just a mixture of dead skin cells, sweat, and oils your skin naturally produces. Smegma is completely normal! All folks have smegma (it’s not just an LS thing).
However, the smegma can become problematic in the case of phimosis. If there is no phimosis, then the smegma can be cleaned out on a daily basis by gently pulling back the hood of the clitoris and washing it with warm water. However, if you have phimosis, you may not be able to pull back the hood of your clitoris and clean out the smegma. Instead, the smegma can build up under the hood of the clitoris which can, over time, create something called keratin pearls. Keratin pearls are essentially balled up, hardened pieces of smegma, and y’all, these things can cause a lot of pain and discomfort. I used to get these frequently. Think about the sensation of a grain of sand stuck in your eye. Except that grain is now stuck underneath the clitoral hood, on the glans which has a ton of nerve endings.
The smegmatic build-up can also lead to irritation, erythema, as well as infection (Myers et al., 2022, 3). By the way, if you have clitoral swelling and/or suspect an infection, run, don’t walk, to your local emergency department.
The Clitoris and Loss of Sensation
Another thing that can happen with clitoral phimosis is reduced sensation in the clitoris.
What do I mean by reduced 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.
I want to acknowledge how very depressing and distressing it can be to suffer from loss of or reduction of clitoral sensation and muted orgasms. This is something that isn’t always appreciated in the medical literature. Personally, I felt heavy depression, anxiety, and distress from the loss of sensation I experienced due to clitoral phimosis.
What to Do if You Have Clitoral Phimosis with Pain and/or Sexual Dysfunction
While consistent and proper use of steroids have shown to slow the progression of LS, making it less likely to have more fusing down the road, steroids cannot reverse fusing or phimosis that has already occurred.
But don’t worry! There are both surgical and non-surgical options for clitoral phimosis. Let’s talk about them!
A trained doctor can perform a lysis of adhesions to separate the clitoral hood from the glans clitoris. In healing the phimosis and exposing the glans clitoris, the patient may experience increased clitoral sensation, leading to stronger arousal and better orgasms. They essentially make a small incision to separate the clitoral hood from the clitoral glans.
To be a candidate for this surgery, the patient must be in clinical remission (have no active signs of disease) and they must agree to strategically use Clobetasol post-operation to avoid re-fusing.
Once healed, the patient returns to a maintenance dose of Clobetasol (or a similar topical corticosteroid) two times a week as the surgery does not cure lichen sclerosus, and the patient will need to continue to treat their lichen sclerosus.
Are Patients Typically Happy with the Surgery? What Does the Science Say?
Goldstein and Burrows conducted a study with 8 people with biopsy-confirmed vulvar lichen sclerosus to assess how successful the surgery was for clitoral phimosis. All 8 patients had the surgery and they all filled out a follow-up questionnaire between 12-36 months post-op to determine their levels of satisfaction with the surgery. Overall, patients reported being either very satisfied (88%) or satisfied (12%) (ibid). The four people who had decreased clitoral sensation before the surgery reported an improvement in sensation and their ability to orgasm. The authors concluded the surgery had low complications and a high degree of success.
Flynn et al.’s 2015 study of 20 patients with vulvar lichen sclerosus also considered patient satisfaction post-surgery for clitoral phimosis and loss of sensation. For the patients that experienced decreased clitoral sensation before surgery, 75% of that group claimed they experienced increased clitoral sensation post-surgery.
Overall, the authors conclude surgery can be a low-complication option for correcting clitoral phimosis and vulvar adhesions that cause recurrent tearing. This is in line with the Goldstein and Burrows (2007) study.
While neither study on the surgery for clitoral phimosis specifically address low libido, it seems to follow that if your low libido is primarily caused by the decreased sensation of the clitoris, then it could be that the surgery could also help in this department. As always, bring these concerns to your doctor.
Important Notes if you are Considering Surgery
Please note if you opt for the surgery, it is very important to find a clinician that specializes in lichen sclerosus and this surgery. Any procedure performed on the clitoris comes with high risks; vet your doctor before going under the knife.
What do I mean by vet your doctor? Ask them questions such as:
- How familiar are you with lichen sclerosus?
- Approximately how many cases of lichen sclerosus do you follow?
- Have you performed this surgery before?
- How many patients have you performed the surgery on?
- What is your success rate?
- Ask them about the Kobner phenomenon and what measures they take to ensure this doesn’t occur.
At the end of the day, make sure you are comfortable with their responses and their surgical plan.
Non-Surgical Lysis of Adhesions
If the thought of going under the knife makes you squeamish, don’t worry, there is a non-surgical option to separate the hood from the glans which is called non-surgical lysis of adhesions.
If you want to learn more about this process, be sure to check out this incredible interview with Dr. Rachel Rubin and Kathy, from Lichen Sclerosus Podcast.
Non-Surgical Myofascial release (MFR)
Clitoral MFR is another option, but one that has less literature behind it. MFR can be helpful for partial phimosis/adhesions, but may not help for complete phimosis, so be sure to get assessed first to determine the extent of phimosis. Surgery may be best if you have complete phimosis and it is causing a functional issue. Regardless, MFR can be a good alternative for folks to start with before committing to a more invasive option like surgery.
So what is myofascial release?
Myofascial release is a technique used in physical therapy where the physical therapist manually manipulates the skin in order to release and provide more mobility to the tight fascia. Fascia is essentially the thin casing of connective tissue that envelops organs, blood vessels, muscles, and nerve fibers and keeps them in place.
In the case of clitoral phimosis, a trained physical therapist can apply MFR to the clitoris in order to help with phimosis. To do this technique, a physical therapist will apply a “small amount of topical lubricant to the clitoral prepuce. Then, a gloved finger or a cotton swab was used to stabilize the clitoris, a prolonged MFR or sustained stretch was applied in the direction away from the fixated clitoris by the therapist’s other finger. The therapist applied this technique along the entire length of the prepuce.” (Rachel Kilgore, 2016).
Case Study of Clitoral Myofascial Release
Morrison et al. (2015) conducted a case study with 1 patient who had clitoral phimosis and complaints of loss of sensation and pain with sex. The patient went through 11 sessions of MFR over the course of 16 weeks. Additionally, the patient received “joint mobilization, muscle energy techniques, transvaginal pelvic floor muscle massage, clitoral prepuce MFR techniques, biofeedback, Integrative Manual Therapy (IMT) techniques, nerve mobilization, and therapeutic and motor control exercises”. (Morrison et al., 2015).
After 11 weeks, the authors noted the patient had complete success with respect to pain with sex and vulvar pain. The mobility of the clitoral hood was completely restored and normal clitoral sensitivity and orgasm returned.
MFR is a great non-invasive option for folks with partial phimosis to explore. Be sure to find a good pelvic floor physical therapist that has experience in applying the technique to the clitoris.
In conclusion, clitoral phimosis *may* occur if you have lichen sclerosus. Clitoral phimosis is when the hood of the clitoris sticks to and scars over the glans clitoris. This can lead to pain and sexual dysfunction. There are both surgical and non-surgical options available to you if you suffer from either sexual dysfunction or pain due to clitoral phimosis.
Let me know in the comments below if you have phimosis and if you’ve had any of the procedures or are thinking of getting one.
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Aerts L, Rubin RS, Randazzo M, Goldstein SW, Goldstein I. Retrospective Study of the Prevalence and Risk Factors of Clitoral Adhesions: Women's Health Providers Should Routinely Examine the Glans Clitoris. Sex Med. 2018 Jun;6(2):115-122. DOI: 10.1016/j.esxm.2018.01.003. Epub 2018 Mar 17. PMID: 29559206; PMCID: PMC5960030. Link here.
Cleveland Clinic – Smegma, – accessed December 7th, 2022.
Flynn AN, King M, Rieff M, Krapf J, Goldstein AT. Patient Satisfaction of Surgical Treatment of Clitoral Phimosis and Labial Adhesions Caused by Lichen Sclerosus. Sex Med. 2015 Nov 13;3(4):251-5. doi: 10.1002/sm2.90. PMID: 26797058; PMCID: PMC4721030.
Goldstein AT, Burrows LJ. Surgical treatment of clitoral phimosis caused by lichen sclerosus. Am J Obstet Gynecol. 2007 Feb;196(2):126.e1-4. doi: 10.1016/j.ajog.2006.08.023. PMID: 17306650.
Kilgore, Rachel, “Specific Myofascial Release as a Treatment for Clitoral Phimosis”, 2016.
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.
Morrison, Pamela MS, PT, DPT, BCB-PMD, IMTC1; Kellogg Spadt, Susan Ph.D., CRNP, IF, CST2; Goldstein, Andrew MD3. The Use of Specific Myofascial Release Techniques by a Physical Therapist to Treat Clitoral Phimosis and Dyspareunia. Journal of Women's Health Physical Therapy: January/April 2015 – Volume 39 – Issue 1 – p 17-28DOI: 10.1097/JWH.0000000000000023
Myers MC, Romanello JP, Nico E, Marantidis J, Rowen TS, Sussman RD, Rubin RS. A Retrospective Case Series on Patient Satisfaction and Efficacy of Non-Surgical Lysis of Clitoral Adhesions. J Sex Med. 2022 Sep;19(9):1412-1420. doi: 10.1016/j.jsxm.2022.06.011. Epub 2022 Jul 20. PMID: 35869023.
Rubin, Rachel. “New Research on Clitoral Adhesions”, 2022. Link to the blog post here.
Boy or boy. I learn more from you, than any doctor. Thanks
Aw, thank you, Sandra <3 - Happy to contribute to sharing education and information about lichen sclerosus. With love, Jaclyn
Wow. I had no clue. I have been complaining about loss of sensation for a couple of years and was give estrogen cream. Never did the gynaecologist tell me about fusing and from the photos in the Rubin blog post mine is extreme. I don’t experience pain but I do feel a hard “pearl” like object under the skin. I had no idea about clitoral anatomy so I had no clue that mine was so hidden until I read this. So disappointed and angry right now. First it took several years to get a diagnosis and I only did because my mom has this so I knew to ask about it. Then to realize your specialist is an idiot really sucks.
I hear you. This is mega maddening and I hate hearing this. Doctors really need to brush up on their LS knowledge and provide education to their patients. This is why we do what we do so that folks can get the information they need. With love, Jaclyn
Hello, thanks so much for all your information. I have a phimosis but and i lost my sensibility so now it’s difficult for me to have an orgasm. No one of the doctor explain me anything
Yup. As you can see from the comments, it’s all too common for folks to receive little to no education about their anatomy and LS and sexual health. We at LSSN are working hard to change that. You are not alone in this; I hear you. With love, Jaclyn
I didn’t know until recently that my clitoral hood had fused over my clitoris. The last I looked it was just my labia shrinking. I didn’t even know that fusion was a thing!!!! I’m afraid that surgery may be the only option. What about laser surgery though? I dunno. I definitely feel lost. Trying to find a healthcare practitioner that meets my needs. It just feels overwhelming.
Hi, Beth. I hear you. But surgery is not the only option, as mentioned in the post. There is a non-surgical lysis of adhesions which you can learn about at https://www.youtube.com/watch?v=F5KO5LGXRx0&t=1471s . My story of unfusing without surgery is also on our blog – https://lssupportnetwork.org/she-reversed-severe-clitoral-adhesions-without-surgery/ (and I will have a YouTube video on that in a few months). I also have a video coming up on clitoral myofascial release in April – all of which is on LSSN’s YouTube channel, so be sure to subscribe there so you don’t miss when those videos release. If you don’t want to wait for all that content to be released, we can always discuss on a support call which you can learn more about at http://www.lostlabia.com/supportcall – but, that said, we do have content on different options coming out. Be sure to check out our provider directory at http://www.lssupoprt.net/providers. There are options and good doctors out there, but it can take time and that’s the frustrating part. With love, Jaclyn