Quality of Life in Vulvar Lichen Sclerosus Patients Treated With Long-Term Topical Corticosteroids.

OBJECTIVE: The aim of the study was to investigate the quality of life in vulvar lichen sclerosus (VLS) patients treated with long-term, individualized topical corticosteroids. METHODS: A prospective cross-sectional study comparing new pretreatment and long-term treated VLS patients attending a dermatogynecology practice in Sydney, Australia. Participants were invited to complete the Vulvar Quality of Life Index (VQLI). The VQLI scores were compared between the 2 groups. RESULTS: A total of 204 biopsy-proven VLS patients-68 new pretreatment and 136 treated patients on topical corticosteroids for 2 years or longer. Treated participants scored lower in all VQLI components, including total score (median = 2.0 [interquartile range {IQR} = 0.0-6.0] vs 13.5 [IQR = 7.5-22.0]; p < .001), symptoms (median = 0.5 [IQR = 0.0-0.5] vs 1.3 [IQR = 0.8-2.0]; p < .001), anxiety (median = 0.0 [IQR = 0.0-0.3] vs 0.8 [IQR = 1.1-2.0]; p < .001), activities of daily living (median = 0.2 [IQR = 0.0-0.3] vs 0.5 [IQR = 0.2-1.1]; p < .001), and sexuality (median = 0.0 [IQR = 0.0-0.7] vs 1.0 [IQR = 0.0-2.0]; p < .001). A higher proportion of treated patients achieved total scores of 0-5, representing nil to minimal impact of VLS on quality of life (98 [72.1%] vs 8 [11.8%]; p < .001). Mild and reversible adverse effects were developed in 11 patients (8.1%). Partially compliant patients were 12 times as likely to develop scarring progression than fully compliant patients (7 [22.6%] vs 2 [1.9%]; p < .001). CONCLUSIONS: Long-term, individualized topical corticosteroid treatment is safe and effective in maintaining disease remission and improves the quality of life of VLS patients. Fully compliant patients demonstrate better treatment outcomes than partially compliant patients.

Quality of life of women with untreated vulval lichen sclerosus assessed with vulval quality of life index (VQLI).

BACKGROUND/OBJECTIVE: The diagnosis of vulval lichen sclerosus (VLS) is often delayed, and little is known about quality of life (QoL) of women with it prior to receiving diagnosis and treatment. This study aimed to investigate the impact on QoL on patients with previously untreated VLS using the Vulval Quality of Life Index (VQLI). METHODS: A prospective cross-sectional survey of patients attending a dermato-gynaecology practice in Sydney, Australia from March 2018 to November 2019. Patients with a new biopsy-proven diagnosis of VLS not previously commenced on topical corticosteroid treatment were invited to complete the VQLI. RESULTS: A total of 68 participants with median age of 58 (interquartile range, IQR 48-67) years. Median symptom duration was 24 (IQR 11-60) months. Scarring was present in 53% of participants. The median total score was 13.5 (IQR 7.5-22.0), global score 1.0 (IQR 1.0-2.0). Twelve per cent had nil to minimal effect on QoL, 38% had a mild effect on QoL, 28% had a moderate effect on QoL, 22% had a severe effect on QoL, and none had a very severe effect on QoL. The highest-scoring domains were symptoms, followed by sexuality, anxiety and activities of daily living. CONCLUSION: There was significant impairment in all QoL areas of women with untreated VLS. Most experienced moderate-to-severe impairment as a result of the disease and approximately half had already developed scarring at the time of diagnosis. The findings emphasise the importance of improved awareness, early diagnosis and early commencement of treatment in VLS.

Identification and management of vulval problems of the postmenopausal woman - Tips and tricks.

Vulval irritation and discomfort can be a common presentation to both primary and secondary care. These symptoms can become increasingly prevalent due to physiological changes, which occur to the female genitalia following menopausal transition or due to inflammatory conditions. The correct diagnosis and management can have a huge impact on the patients' quality of life. However, due to the nature of the symptoms, there can be delayed presentation to healthcare professionals. This article gives an overview of the most common benign vulval conditions in the post-menopausal woman, their clinical features and the diagnosis and initial management.

Vulvar Lichen Sclerosus: Outcomes Important to Patients in Assessing Disease Severity.

OBJECTIVE: The aim of the study was to determine outcome measures that women with vulvar lichen sclerosus (LS) rate as important in assessing disease severity with the ultimate goal of including these items in a disease severity rating tool. METHODS: An online survey of women older than 18 years with a diagnosis of vulvar LS was performed. The survey was posted in Facebook LS support groups. Participants rated items on a scale from 1 to 5 (not important to include to essential to include) in a disease severity scale. Participants also rated how often they were affected by various symptoms on a scale from 1 to 5 (never to daily). Mean rating of importance and mean rating of frequency for each sign and symptom were calculated. T tests were used to compare patients with biopsy-proven disease with those with a clinical diagnosis of LS. RESULTS: Nine hundred fifty-eight participants completed the survey (86% completion rate). Patients felt that the most important items to assess disease severity were irritation (4.39), fusion of the labia (4.38), soreness (4.37), itch (4.34), change in vulvar skin (4.34), and decrease in quality of life (4.33). The most frequently experienced items by those with LS were irritation (3.92), changes in appearance of vulvar skin (3.92), and discomfort (3.89). There were no differences between patients with biopsy-proven LS versus those diagnosed on clinical examination. CONCLUSIONS: Future LS severity assessment tools will need to include a combination of patient-rated symptoms, clinical rated signs and anatomical changes, and quality of life measures.

Clinical outcomes and adherence to topical corticosteroid therapy in women with vulvar lichen sclerosus: A retrospective cohort study.

BACKGROUND: Vulvar lichen sclerosus is a progressive dermatitis with significant itching, pain, and sexual dysfunction. OBJECTIVE: To investigate topical steroid use and clinical improvement across multiple specialties. METHODS: Retrospective cohort study at dermatology, gynecology, and vulvovaginal specialty clinics from 2012 to 2017. Descriptive statistics and panel logistic regression were performed. RESULTS: A total of 333 women attended 1525 visits (median 6/patient; range, 1-24 visits). Patients used steroids exactly as prescribed at 66% of visits, less than prescribed at 26%, and not at all at 8%. Versus no use, exact use improved symptoms (odds ratio [OR], 4.6; 95% confidence interval [CI], 2.2-9.6) and physical examination findings (OR, 6.9; 95% CI, 2.7-17.6) more than infrequent steroid use (symptoms: OR, 2.5; 95% CI, 1.2-5.4; physical examination findings: OR, 4.2; 95% CI, 1.6-11.0). Sexual activity status was noted in 93% of vulvovaginal, 29% of gynecology, and 0% of dermatology visits. At intake, 42% of women were sexually inactive because of pain; of these, 37% became sexually active after steroid treatment. Steroid adherence was not associated with change in sexual activity. CONCLUSIONS: Women with vulvar lichen sclerosus improve more when topical steroids are used exactly as prescribed, although some improvement occurs with imperfect use. Sexual activity documentation is inconsistent, limiting quality of life follow-up.

The Vulval Disease Quality of Life Index in women with vulval lichen sclerosus correlates with clinician and symptom scores.

BACKGROUND/OBJECTIVES: The Vulval disease Quality of Life Index (VQLI) is a new tool that assesses the burden of vulval disease on quality of life (QoL). Our objective was to assess the correlation between VQLI score and clinician-rated severity scores, overall patient itch/discomfort, disease duration, sexual activity, and age, in vulval lichen sclerosus (VLS) at a vulval disorders clinic. METHODS: A retrospective case note review, including consecutive women with VLS who attended the clinic between April and October 2018. Outcome measures include the VQLI score, clinician-rated severity score, and patient symptom score. RESULTS: A total of 109 women with VLS were included. On multivariable analysis, there was evidence of a positive relationship between VQLI scores and the total clinician-rated score (mean increase in VQLI score per unit increase in clinician score 1.34, 95% confidence interval [CI] 0.31, 2.38; P = 0.01); the relationship was stronger for the cutaneous component. There was little evidence for relationships of the VQLI with the patient's age, sexual activity or time since onset of symptoms. There was strong evidence for a positive relationship between VQLI score and overall itch/discomfort score (mean increase 2.38, 95% CI 1.88, 2.88; P < 0.001). New and follow-up data were obtained on sequential visits for 12 women, among whom the VQLI score dropped a mean -2.75 points between visits (95% CI -6.05, 0.55; P = 0.094). CONCLUSION: The clinician-rated severity correlates with the impact of VLS on QoL. The VQLI captures information included in a patient itch/discomfort score, which can be easily incorporated into routine assessment.

A Qualitative Study on Experiences After Vulvar Surgery in Women With Lichen Sclerosus and Sexual Pain.

INTRODUCTION: Lichen sclerosus (LS) of the vulva can profoundly affect sexual interaction because of painful fissures and narrowing of the vaginal introitus. Successful surgical treatment is usually defined as restoration of (pain-free) penetrative sexual activity. AIMS: To evaluate the impact of surgery on (dyadic) sexual functioning and pleasure and psychological well-being. METHODS: Nineteen women with anogenital LS participated in audiotaped, qualitative, individual interviews after surgery to re-enable sexual intercourse. MAIN OUTCOME MEASURES: Physical, sexual, and psychological experiences were analyzed using the constant comparative method. RESULTS: Vulvar surgery resulted in a decrease of sexual pain in 13 of 19 patients (68%). Of these 13 patients, 4 were completely free of pain and the other 9 patients expressed a shift from preoperative sexual pain to postoperative sexual discomfort. These women reported improved sexual functioning, increased sexual activity and intimacy with the partner, and reinstated feelings of being an adequate woman and sexual partner. In 1 of the 19 patients (5%), surgery did not result in decreased sexual pain, yet she continued to have intercourse. Five of the 19 patients (26%) stopped having intercourse because of pain; one woman had secondary vaginismus and another woman, in retrospect, had premorbid generalized unprovoked vulvodynia. Four of these women were unable to communicate with their partner about sexual matters and to change their sexual repertoire (satisfactorily) once they had ceased intercourse (attempts). Eighteen women (95%) reported a decrease of LS symptoms in daily life. CONCLUSION: Vulvar surgery seems an effective treatment for most women with LS who experience sexual pain owing to anatomic or epithelial changes and who wish to resume intercourse. To assess whether women might benefit from such surgery and/or whether (additional) sexual counseling is indicated, preoperative sexological couple-based consultation is needed. This consultation should exclude comorbid vaginismus and generalized unprovoked vulvodynia and index the couple's pre-existing sex life, including sexual communication skills, and the ability to incorporate non-coital pain-free sexual activities.

Motives for Vulvar Surgery of Women with Lichen Sclerosus.

INTRODUCTION: Women with lichen sclerosus (LS) may experience (superficial) dyspareunia or the inability to have vaginal intercourse due to painful fissures and narrowing of the vaginal introitus. A surgical procedure may contribute to the relief of these sexual pain problems. It is unknown what motives women have to undergo surgery in order to regain the ability to have sexual intercourse. Such knowledge can offer important insights that are indispensable when discussing the option of vulvar surgery with patients with LS and might prevent potential patient dissatisfaction. This study's purpose is to examine why women with LS decide to undergo vulvar surgery in order to restore intercourse. METHODS: Nineteen women with anogenital LS participated in audiotaped qualitative individual interviews, in which their motives for undergoing vulvar surgery to restore intercourse were explored retrospectively. Interview data were analyzed using the constant comparative method. RESULTS: Three main motives for wanting to undergo surgery in order to restore intercourse were found. These were the desire to be a "normal" woman, the desire to sexually satisfy the male partner, and the desire to regain the experience of intimacy and sexual enjoyment. Another reason for surgery was to reduce daily life LS symptoms. The sexual pain complaints prevented the women from living up to their norms about heterosexuality and gender roles. Being unable to have intercourse led women to feel inadequate as a woman and as a sexual partner. CONCLUSIONS: Women with LS may opt for surgery to restore their identity as a "normal" woman and sexual partner, to regain the experience of coital intimacy, and to be less bothered by LS symptoms in daily life. The present findings point to the importance of a thorough couple-based sexual history in which women's motives for and expectations of vulvar surgery will be explored in order to facilitate a good decision and to increase treatment satisfaction.

The impact of vulvar lichen sclerosus on sexual dysfunction.

BACKGROUND: Lichen sclerosus (LS) is a chronic inflammatory condition that is known to arise on the vulva. Many women with LS report vulvar pain, often affecting a patient's quality of life. In this study, the sexual function of LS patients, with and without pain, was compared to control populations. MATERIALS AND METHODS: A case-control study to examine the relationship between LS and sexual dysfunction was conducted. A total of 335 women presenting to the gynecology clinic were included in the study: 197 women with biopsy confirmed LS were compared to two control groups (95 asymptomatic women were "healthy" controls and 43 women had vulvovaginal candidiasis) on self-reported current health complaints, medical and surgical history and current symptoms such as pain and itching, type and frequency of sexual activity, and satisfaction with sexual activity. RESULTS: Women with LS reported less frequent sexual activity than healthy controls (p=0.007) and Candida controls (p=0.04). Currently sexually active women with LS were significantly less likely to report vaginal intercourse (71.6%) than healthy controls (89.0%, p=0.003) or Candida controls (100%, p=0.0003), even though similar proportions of all three groups reported that vaginal intercourse was important. Satisfaction towards the quality of current sexual activity was significantly lower among women with LS compared with both the healthy and Candida control groups. 23.7% of women with LS reported that sexual activity was rarely or never satisfactory as compared with 0% of healthy controls (p<0.0001) and 6.5% of Candida controls (p=0.03). CONCLUSION: Women with LS have less frequent sexual activity and less satisfying sexual activity when compared with controls.

Recognition and management of vulvar dermatologic conditions: lichen sclerosus, lichen planus, and lichen simplex chronicus.

Lichen sclerosus, lichen planus, and lichen simplex chronicus are dermatologic conditions that can affect the vulva. Symptoms include vulvar itching, irritation, burning, and pain, which may be chronic or recurrent and can lead to significant physical discomfort and emotional distress that can affect mood and sexual relationships. With symptoms similar to common vaginal infections, women often seek care from gynecological providers and may be treated for vaginal infections without relief. Recognition and treatment of these vulvar conditions is important for symptom relief, sexual function, prevention of progressive vulvar scarring, and to provide surveillance for associated vulvar cancer. This article reviews these conditions including signs and symptoms, the process of evaluation, treatment, and follow-up, with attention to education and guidelines for vulvar care and hygiene.

Health-related quality of life and patient-defined benefit of clobetasol 0.05% in women with chronic lichen sclerosus of the vulva.

BACKGROUND: This study investigates the health-related quality of life in patients with vulvar lichen sclerosus (LS) and the patient-defined therapeutic benefit of clobetasol. METHODS: A survey analysis of 96 women with LS after treatment with clobetasol was performed. Quality of life was assessed with the Skindex-29. The Patient Benefit Index (PBI) was used to determine the therapeutic benefit. RESULTS: The overall response rate was 59.2%. Quality of life was most impaired by somatic symptoms (scale 'Symptoms' score 3.2) and emotional stress (scale 'Emotions' score 3.1), while social interactions (scale 'Functioning' score 1.9) played an inferior role (p < 0.001). Primary therapeutic goals 'to have confidence in the therapy' and 'to be free of itching' were achieved in 73.2 and 69.0% of patients who indicated the goal applied to them. The global PBI score was 3.06. In 93.2% of patients it was >1, indicating a potential benefit from clobetasol. CONCLUSION: Topical clobetasol is of potential therapeutic benefit for patients with vulvar LS and might therefore improve quality of life.

The effect of vulvar lichen sclerosus on quality of life and sexual functioning.

Lichen sclerosus (LS) is a chronic skin disorder mostly seen on the female anogenital skin. The aim of this study was to evaluate the quality of life (QoL) and sexuality in female patients with LS and to compare their scores with healthy controls. In addition, we wanted to find factors associated with impaired sexual functioning in patients with LS. Members of the Dutch LS foundation and support group were asked to fill in three questionnaires: the Dermatology Quality of Life Index, Female Sexual Function Index (FSFI) and Female Sexual Distress Scale (FSDS). 215 of 368 patients returned their questionnaire (58.4%). Their scores were compared to a control group which consisted of 61 women of similar age (p = 0.472) without a skin disorder. Of all domains of QoL, LS interfered most with sexual functioning. Patients significantly scored lower on all subscales of the FSFI (desire (p = 0.016), arousal (p < 0.001), lubrication (p < 0.001), orgasm (p < 0.001), satisfaction (p < 0.001) and pain (p < 0.001), indicating worse sexual functioning. These problems with sexual functioning brought about significant sexual distress (p < 0.001). Patients who experienced more influence on their QoL had more sexual difficulties, leading to more sexual distress independent of their age.