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.
Symptoms
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.
Diagnosis
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.
Diagnostic Dilemma
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.
Treatment
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
References:
Jill Krapf, MD MEd FACOG NCMP – Instagram
Vulvar Lichen Sclerosus from Pathophysiology to Therapeutic Approaches: Evidence and Prospects
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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.
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FAQ
What are pelvic floor muscles?
The pelvic floor muscles are a group of muscles that run from the coccyx to the pubic bone. They are part of the core, helping to support our entire body as well as providing support for the bowel, bladder and uterus. These muscles help us maintain bowel and bladder control and are involved in sexual pleasure and orgasm. The technical name of the pelvic floor muscles is the Levator Ani muscle group. The pudendal nerve, the levator ani nerve, and branches from the S2 – S4 nerve roots innervate the pelvic floor muscles. They are under voluntary and autonomic control, which is a unique feature only they possess compared to other muscle groups.
What is pelvic floor physical therapy?
Pelvic floor physical therapy is a specialized area of physical therapy. Currently, physical therapists need advanced post-graduate education to be able to help people with pelvic floor dysfunction because pelvic floor disorders are not yet being taught in standard physical therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical therapy education in this unique area.
What happens at pelvic floor therapy?
During an evaluation for pelvic floor dysfunction the physical therapist will take a detailed history. Following the history the physical therapist will leave the room to allow the patient to change and drape themselves. The physical therapist will return to the room and using gloved hands will perform an external and internal manual assessment of the pelvic floor and girdle muscles. The physical therapist will once again leave the room and allow the patient to dress. Following the manual examination there may also be an examination of strength, motor control, and overall biomechanics and neuromuscular control. The physical therapist will then communicate the findings to the patient and together with their patient they establish an assessment, short term and long term goals and a treatment plan. Typically people with pelvic floor dysfunction are seen one time per week for one hour for varying amounts of time based on the severity and chronicity of the disease. A home exercise program will be established and the physical therapist will help coordinate other providers on the treatment team. Typically patients are seen for 3 months to a year.
What is pudendal neuralgia and how is it treated?
Pudendal Neuralgia is a clinical diagnosis that means pain in the sensory distribution of the pudendal nerve. The pudendal nerve is a mixed nerve that exits the S2 – S4 sacral nerve roots, we have a right and left pudendal nerve and each side has three main trunks: the dorsal branch, the perineal branch, and the inferior rectal branch. The branches supply sensation to the clitoris/penis, labia/scrotum, perineum, anus, the distal ⅓ of the urethra and rectum, and the vulva and vestibule. The nerve branches also control the pelvic floor muscles. The pudendal nerve follows a tortuous path through the pelvic floor and girdle, leaving it vulnerable to compression and tension injuries at various points along its path.
Pudendal Neuralgia occurs when the nerve is unable to slide, glide and move normally and as a result, people experience pain in some or all of the above-mentioned areas. Pelvic floor physical therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical therapy and may also benefit from medical management that includes pharmaceuticals and procedures such as pudendal nerve blocks or botox injections.
What is interstitial cystitis and how is it treated?
Interstitial Cystitis is a clinical diagnosis characterized by irritative bladder symptoms such as urinary urgency, frequency, and hesitancy in the absence of infection. Research has shown the majority of patients who meet the clinical definition have pelvic floor dysfunction and myalgia. Therefore, the American Urologic Association recommends pelvic floor physical therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical therapy and may also benefit from pharmacologic management or medical procedures such as bladder instillations.
Who is the Pelvic Health and Rehabilitation Team?
The Pelvic Health and Rehabilitation Center was founded by Elizabeth Akincilar and Stephanie Prendergast in 2006, they have been treating people with pelvic floor disorders since 2001. They were trained and mentored by a medical doctor and quickly became experts in treating pelvic floor disorders. They began creating courses and sharing their knowledge around the world. They expanded to 11 locations in the United States and developed a residency style training program for their employees with ongoing weekly mentoring. The physical therapists who work at PHRC have undergone more training than the majority of pelvic floor physical therapists and as a result offer efficient and high quality care.
How many years of experience do we have?
Stephanie and Liz have 24 years of experience and help each and every team member become an expert in the field through their training and mentoring program.
Why PHRC versus anyone else?
PHRC is unique because of the specific focus on pelvic floor disorders and the leadership at our company. We are constantly lecturing, teaching, and staying ahead of the curve with our connections to medical experts and emerging experts. As a result, we are able to efficiently and effectively help our patients restore their pelvic health.
Do we treat men for pelvic floor therapy?
The Pelvic Health and Rehabilitation Center is unique in that the Cofounders have always treated people of all genders and therefore have trained the team members and staff the same way. Many pelvic floor physical therapists focus solely on people with vulvas, this is not the case here.
Do I need pelvic floor therapy forever?
The majority of people with pelvic floor dysfunction will undergo pelvic floor physical therapy for a set amount of time based on their goals. Every 6 -8 weeks goals will be re-established based on the physical improvements and remaining physical impairments. Most patients will achieve their goals in 3 – 6 months. If there are complicating medical or untreated comorbidities some patients will be in therapy longer.