By Stephanie Prendergast, MPT, Cofounder, PHRC Los Angeles
What is Vulvar Lichen Sclerosus?
Like so many other pelvic pain diagnoses, Vulvar Lichen Sclerosus (VLS) is riddled with challenges in terms of diagnosis and treatment. Many people with VLS also have pelvic floor dysfunction, and as a result we have seen lots of patients with both. Slight adaptations to treatments that seem to be failing can turn things around, people just need to know what to do. We understand all too well the difficulty our patients have had with this diagnosis! However, recent research is showing hope and promise for suffering patients and this week we are happy to share the good news and provide hope.
VLS is an inflammatory, progressive disease of the vulvar tissue. It commonly affects the clitoris, clitoral hood, labia, and interlabial sulci. In can also affect the perineum and peri-anal tissue.
VLS was previously thought to be a disease that appears in the pre-pubital and postmenopausal periods, and this is what doctors are currently taught about the disease which is unfortunately leading to under- and misdiagnoses. Recently VLS experts and researchers from the Centers for Vulvovaginal Disorders are proving that VLS actually affects women of all ages.
It can take suffering people five to 15 years to get a diagnosis, with the prevalence estimated to be one in 70 vulva owners.
VLS is currently thought to be an autoimmune disease where parts of the epithelium get attacked by our body’s own immune response, this deeper epithelial inflammation can lead to superficial skin changes in the vulva: thickening, itching, burning, tightness, cracking, scarring
Data shows 12% of women with LS also have a sister, mother or relative with this diagnosis. Due to delayed, mis- and underdiagnosis challenges we suspect this number is actually higher.
Women may notice symptoms gradually over time and we want to encourage people to do regular vulvar skin inspections, take pictures, and pay attention to symptoms. Commonly our patients with VLS report that they initially thought they developed yeast infections the week before their period, and then the symptoms reduce when they actually start their menstrual cycle. We must make a few points about this. First, when questioned in more detail, people often report that their symptoms are along the hairline medial to the labia minora or the clitoris. Vaginal yeast infections tend to feel more confined to the actual vagina unless they are very severe and also affect the skin.
All things that itch are not yeast! It is important that if yeast is suspected to actually get tested! Because people with VLS feel like they often have a yeast infection they may empirically treat it with the OTC medications or prescriptions without testing. Unfortunately this leads to further delayed diagnosis and suffering. When cultures return negative it opens up the possibility of other diagnoses, including Lichen Sclerosus.
Hormonal deficiencies do not cause VLS but they can exacerbate symptoms which is why some women notice a cyclic pattern of symptoms at times in their cycle when estrogen levels are low. Estrogen levels can also be lower when people are on hormonal contraceptives, certain cancer and acne medications, while they breast feeding, and prior to puberty and menopause.
The only way to confirm a diagnosis of VLS is via a biopsy, typically performed by a gynecologist or a dermatologist. We encounter people who are barely symptomatic and we encounter people that have had unmanaged VLS for years. It is important to note that VLS can go into flare periods and remissive periods. Having worked with so many patients with this, we recognize that almost all of our patients have not been given the latest information and are misinformed about how they actually need to treat this disease. The second half of this post will provide options and tips that are commonly not being utilized by suffering patients!
The good news is that there are affordable, evidence-based treatments that can make a big difference in symptom reduction regardless of the stage of the disease.
Early detection is key to help people get into remission and avoid architecture changes and pain/discomfort
Biopsies must be taken at active sites of visible suspected VLS, if not done in correct areas there may be a false negative and later biopsies with different providers may be positive.
Unfortunately we encounter the situation where a patient has been told they have VLS and they have not undergone a biopsy. This is not a clinical diagnosis, therefore, a biopsy is necessary for proper diagnosis. Patients are often given clobetasol without the biopsy.
This is problematic because VLS is something that can be managed with life-long care, without a biopsy we do not know if the problem is in fact VLS therefore patients understandably may stop treatment if they are not educated about short term and long term care, and lifelong management versus treatment for flares.
Studies show that a topical corticosteroid called clobetasol is the most effective treatment for LS. Various protocols exist and vary for flares and remissive states. We often see women given very little education or direction about how and why to use it the way we suggest which leads to problems with compliance and efficacy. LS leaders suggest the best way to apply the topical is to soak first in a sitz bath or tub and then actually rub in the topical. Commonly, we encounter patients who are not following the evidence-based protocols and therefore they are suffering more than they need to. The good news is we can help provide education and resources to help reduce symptoms and control the disease!
Many patients with VLS also have pelvic floor dysfunction, and pelvic floor physical therapy can help manage the somatic issues that coexist with VLS.
Vaginal moisturizers can help reduce symptoms, brands we like include aquaphor, products from Sweetspot Labs, Vmagic.
Because hormone deficiencies can exacerbate symptoms, symptom management may also include medical hormonal management.
Other treatments are available such as lasers, PRP, and in some cases surgery. These things may lessen symptoms and improve comfort but to date do not have an actual impact on the disease itself.
Take Home Message and Additional Resources
With proper diagnosis and treatment it is possible for people with LS to be in remissive, comfortable periods. We see a lack of proper education in our communities about the disease and hope this blog provides resources and hope! People with VLS should consider seeing a pelvic floor physical therapist and should work closely with their doctors to manage their symptoms and adhere to effective treatments.
Dr. Andrew Golsteing and Jill Krapf have dedicated time to researching and discussing LS, we thank them for advancing our knowledge and are including their resources for you below!
Center for Vulvovaginal Disorders: Lichen Sclerosus Webinar
Are you unable to come see us in person in the Bay Area, Southern California or New England? We offer virtual physical therapy appointments too!
Virtual sessions are available with PHRC pelvic floor physical therapists via our video platform, Zoom, or via phone. For more information and to schedule, please visit our digital healthcare page.
In addition to virtual consultation with our physical therapists, we also offer integrative health services with Jandra Mueller, DPT, MS. Jandra is a pelvic floor physical therapist who also has her Master’s degree in Integrative Health and Nutrition. She offers services such as hormone testing via the DUTCH test, comprehensive stool testing for gastrointestinal health concerns, and integrative health coaching and meal planning. For more information about her services and to schedule, please visit our Integrative Health website page.
Melissa Patrick is a certified yoga instructor and meditation teacher and is also available virtually to help, for more information please visit our therapeutic yoga page.
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