Quality of life and sexuality in women with lichen sclerosus: a cross-sectional study.

BACKGROUND: Lichen sclerosus (LS) affects the female anogenital area, causing anatomical changes. Reported symptoms include itching, soreness and dyspareunia. AIM: To evaluate the quality of life and sexual functioning in women with LS. METHODS: In total, 158 women aged over 18 years, diagnosed with LS, and referred to North Denmark Regional Hospital from January 2018 to November 2019, were included. Three questionnaires, the Female Sexual Function Index (FSFI), Dermatology Life Quality Index (DLQI) and the World Health Organization Five-Item Well-Being Index (WHO-5), were completed. RESULTS: The women (mean age 47 years, range 18-76) presented a low score on all FSFI scales, with a mean score of 13.83 (95% CI 12.46-15.20), indicating reduced sexual functioning. The subgroup evaluation scored for desire 2.32, arousal 2.23, lubrication 2.39, orgasm 2.28, satisfaction 3.02 and pain 1.59. The DLQI results revealed a mean score of 7.88 (95% CI 7.02-8.74), indicating a moderate effect on the women's everyday life. The mean subscores were treatment 0.32, sexual difficulties 1.56, relations 1.02, work/study 0.34, sport 0.45, social activities 0.54, clothing 0.89, shopping 0.22, embarrassment 0.99 and itching, soreness and pain 1.55. The mean score for the WHO-5 was 56.66 (95% CI 53.48-59.84) indicating that 40% of the women had signs of depression. CONCLUSION: LS has a considerable influence on the sexual functioning and quality of life of women. Healthcare professionals must not only consider the biological aspects but also the psychological and social aspects.

Sexual function is adversely affected in the majority of men presenting with penile lichen sclerosus.

Male genital lichen sclerosus (MGLS) is a chronic inflammatory condition that can present with a range of debilitating symptoms. Sexual dysfunction is reported by most women with lichen sclerosus but by relatively few men. This prospective study looked at 78 men with MGLS. Sexual difficulties were experienced by 64 (82%) patients, with 54 of the 64 attributing their sexual dysfunction directly to their MGLS. Sexual dysfunction appears to be more common in MGLS than other genital diseases such as psoriasis and sexually transmitted infections. Penile soreness due to active inflammation is the commonest cause of dyspareunia. Psychological factors are also important. Assessment and management of MGLS must include sexual history as men will not usually volunteer this information. Monitoring sexual function may be useful to assess disease outcome.

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.

Patients with lichen sclerosus experience moderate satisfaction with treatment and impairment of quality of life: results of a cross-sectional study.

BACKGROUND: Although they are considered relevant, little is known about satisfaction with treatment and health-related quality of life (HRQoL) among patients with lichen sclerosus (LS). OBJECTIVES: In a cross-sectional study, we aimed to examine (i) satisfaction with treatment, (ii) patient characteristics associated with satisfaction and (iii) HRQoL in Dutch patients with LS. METHODS: Members of the Dutch LS Patient Association (n = 750) were invited to complete a web-based survey. We measured satisfaction with treatment with a study-specific questionnaire, and HRQoL with the Skindex-29. We calculated domain scores for symptoms, emotions and functioning, and categorized scores into little, mildly, moderately or severely impaired HRQoL. We used a multiple linear regression analysis to examine whether patient characteristics were associated with treatment satisfaction. RESULTS: In total 303 patients (40·4%) were included. Patients under current treatment (n = 265, 87·5%) were moderately satisfied with their treatment. Patients rated 'treatment effectiveness' as most important, although 58 (22%) were dissatisfied with the effectiveness of their current treatment. More impairment on the HRQoL emotions domain and a higher degree of disease severity were both associated with lower satisfaction with treatment and explained in total 13·5% of the variance in treatment satisfaction. On all HRQoL domains, one-third of the patients (range 34·7-38·9%) reported severe impairment. CONCLUSIONS: Patients with LS are moderately satisfied with their treatment, and one-third of patients experience severe impairment of HRQoL. To improve dermatological care, we recommend enhancement of doctor-patient communication, information provision and organization, which may be more amenable to change than treatment effectiveness or safety.

Female lichen sclerosus genitalis: discomfort and adaptation.

INTRODUCTION: Female genitalis lichen sclerosus (FGLS) occurs on skin and mucous membranes and shows inflammatory lesions, chronic atrophic, itching and pain. These physical damages produce a decline in sex and a resulting relational couple discomfort. AIM: We describe the discomfort and the relationship between physical and psychological damage. MATERIALS AND METHODS: A random sample, between 35-55 years (average 44.55, SD 6.00) includes 2 groups of 55 subjects: - the first with LSAG diagnosis since 24 months - the latter with controls. We evaluated personality by the MMPI-2, discomfort by short SF-36, couple relationship by ISS, coping by Cope and resilience by CR-RISC scales. Statistical analysis was performed by SPSS 14 version. P-values <0.05, 95% confidence limits, t, F, W and P tests and two by two table, compare two rates and Cohort/RTC were employed. RESULTS: Discomfort makes same personality factors changed. 50 FGLS recorded higher scores than 50 controls in MMIP-2, ISS and CD-RISC scales, lower in ISF-36 and COPE scale. Statistical tests show a valid significance (p<0.00001), a 94.3% of exposed with outcome, an etiological fraction in exposed of 96,15% and a 26 risk / prevalence ratio. DISCUSSION: The psychological distress arises as a result of somatic damage and reduces expression and thought of self. Lesion and pain produce depression, anxiety, negative emotionality and decline of sex. High values of t, F and W tests indicate a good validity of results. CONCLUSIONS: The psychological distress grows from somatic damages and, in progressive way, it reduce expressions and thoughts of ego in increasingly tight limits: through successive stages, it involves social relations, couple relationships and individual identity.

Anogenital malignancies and premalignancies: facts and controversies.

Anogenital malignancies and premalignancies are an important personal/public health problem due to their effects on individuals' physical, mental, and sexual health. Also, due to their etiological association with human papillomavirus (HPV) infection, anogenital malignancies and premalignancies constitute an immense public health burden. In addition to HPV infection, immunosuppression, HIV infection, chronic dermatoses, such as lichen sclerosis, previous radiotherapy and chemotherapy treatments, and smoking, are the other important etiopathologic factors in the development of anogenital malignancies and premalignancies. The incidence of anal squamous cell carcinoma (SCC) has increased considerably in the past decade, mainly due to the growing number of cases in high-risk groups, such as men who have sex with men, immunosuppressed individuals, and patients with HIV infection. Also, an increase in vulvar intraepithelial neoplasia (VIN) and VIN-related invasive vulvar cancer has been noted in women younger than age 50 years due to its association with HPV infections over the past decade. SCC of the scrotum seems to be the first cancer linked to occupational exposure. Bowen's disease, Bowenoid papulosis, and erythroplasia of Queyrat are the most widely seen premalignancies of anogenital region and are all forms of squamous intraepithelial neoplasia. Histopathologically, these conditions share identical histologic features of SCC in situ, but their clinical features differ. Early diagnosis is vital to improve prognosis, especially in anogenital malignancies. Also, if a delay occurs in diagnosis, treatment options used will be associated with significant negative effects on the patient's psychological well-being and quality of life; hence, management of anogenital malignancies and premalignancies should be organized in a multidisciplinary fashion.

Quality of life in Dutch women with lichen sclerosus.

BACKGROUND: Lichen sclerosus (LS) is a chronic inflammatory skin disease. Earlier studies have shown an impaired health-related quality of life (HRQoL), but more extensive research including generic questionnaires has not been reported. OBJECTIVES: To investigate, in a cross-sectional study, the HRQoL of a sample of Dutch women with LS; to compare the resulting HRQoL data with that available from other skin diseases and the general Dutch population; to explore factors that may influence the HRQoL. METHODS: Female members of the Dutch LS Foundation and Support Group filled out three questionnaires electronically: the Skindex-29, the SF-12 and the EQ-5D visual analogue scale (VAS). We distinguished Skindex-29 scores into groups with 'little' (score 0-24), 'mild' (25-31), 'moderate' (32-43) and 'severe' (44-100) impact on HRQoL. We compared differences using the Mann-Whitney U-test and the Kruskal-Wallis test, and correlations using Spearman's rank correlation coefficient. RESULTS: A total of 262 women with LS were included. The average diagnostic delay was 4·9 (SD 7·1) years. Patients had a mean total Skindex-29 score of 38·4 (0-100, SD 17·2). Domain scores for symptoms, emotions and functioning were 46·8 (SD 19·0), 38·2 (SD 20·2) and 33·6 (SD 19·3), respectively. The SF-12 showed average PCS-12 (physical component) and MCS-12 (mental component) scores of 47·7 and 48·5, respectively. For the Dutch population these scores were 49·3 and 52·3. The mean EQ-5D VAS score was 74·1 (SD 15·4). CONCLUSIONS: There is a considerable delay in diagnosis for female Dutch patients with LS. The Skindex-29 domain scores showed a moderately impaired HRQoL. Women with LS reported a lower generic HRQoL than the average female Dutch population.

Silent no more! The lived experiences of women with lichen sclerosis.

PURPOSE: Lichen Sclerosis (LS) is an often unrecognized and misdiagnosed chronic inflammatory skin condition of the anogenital area that affects quality of life, bringing severe discomfort and distress to affected men, women, and children. The purpose of this qualitative study is to explore the lived experiences of women with LS. DATA SOURCES: Content analysis was conducted of data obtained from three public online forums/blogs used by women with LS. A total of 527 postings/entries were analyzed for patterns and themes by four researchers. CONCLUSIONS: Five core themes emerged as a result of this study, revealing feelings of frustration and despair stemming from healthcare providers' lack of knowledge in relation to Lichen Sclerosis, often leading to misdiagnosis, prolonged suffering, and an altered quality of life. IMPLICATIONS FOR PRACTICE: Knowledgeable healthcare providers and additional research into the cause, treatment, and cure of Lichen Sclerosis are needed. Advance-practice nurses stand to play an important role in the areas of education, research, policy making, and clinical practice to advocate for and empower women with LS.

The surgical management of lichen sclerosus of the glans penis: our experience and review of the literature.

INTRODUCTION: Lichen sclerosus (LS) of the glans penis is a chronic, progressive, scleroatrophic inflammatory process of unknown etiology affecting the glans penis, prepuce, and urethra and may lead to severe impairment of sexual and urinary function. AIMS: To report our experience of surgical management of LS of the glans penis. MAIN OUTCOME MEASURES: Complications, patients' satisfaction, cosmesis, resolution of pain and puritus, and postoperative sexual function and were recorded retrospectively. METHODS: The surgical outcome of the 31 patients who have undergone resurfacing of the glans penis with the use of skin grafting for the management of genital LS in our institute is reported. RESULTS: After a median follow-up of 12.8 months, 26 patients (84%) were fully satisfied with cosmetic and functional results, and 71% of them have resumed sexual activity. CONCLUSIONS: Resurfacing of the glans penis represents a simple and reproducible technique for the management of LS and yields excellent functional and cosmetic results.

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.

Psychological and psychiatric morbidity in lichen sclerosus in a cohort recruited from a genitourinary medicine clinic.

Forty-five cases of lichen sclerosus (LS) were retrospectively found between 2000 and 2008 among those attending an associate university teaching hospital sexually transmitted infection (STI) clinic (genitourinary [GU] medicine clinic) and 26 responders of the 45, to a questionnaire about psychological morbidity and psychiatric morbidity, were evaluated. Sixteen percent of the patients were worried about the possibility of infecting their partners with the condition, despite counselling to the contrary. Twenty-seven percent felt that the condition's cosmetic appearance adversely affected libido. There was moderate to severe anxiety at one time or another in 58% while 27% experienced depression at one time or another; 19% admitted to insomnia as a result of the condition; 23% were stressed while 11.5% were worried about starting a new relationship. LS has a profound effect on mental health. Selected patients with LS may benefit from routine referral to a clinical psychologist, within the sexually transmitted disease setting to elaborate and institute coping strategies.

Management of anogenital lichen sclerosus.

Lichen sclerosus (LS) is a skin condition that affects genital and extra genital epithelia in both males and females of all ages and it may occur in association with other autoimmune disease. Currently, the first line effective treatment is an ultra-potent topical corticosteroid. The long-term sequelae of LS include scarring, malignancy, which is rare, and psychosexual disfunction, which is common.

Dermatological symptoms and sexual abuse: a review and case reports.

Dermatological symptoms in cases of sexual abuse can be very diverse. To establish a causal relationship between skin diseases and sexual abuse is particularly difficult. In dermatology, three main areas of presentation can be identified. ACUTE CONSEQUENCES: Direct injuries found on the genitalia and body. Behaviour and psychological changes seen. Sexually transmitted diseases (STD) may be identified, after an appropriate incubation period. LONG-TERM CONSEQUENCES: In the long term, even decades later, patients may manifest with a wide spectrum of psychosomatic manifestations of skin diseases, particularly factitious disorders. IMITATIONS: A group whose skin manifestations may mimic and be mistaken for sexual abuse. The initial suspicion of sexual abuse and the need for specific questioning and investigations can lead to a disturbance in the doctor-patient relationship.

Psychological distress in women with nonneoplastic epithelial disorders of the vulva.

The aim of this study was to evaluate psychological distress in 44 women with vulvar squamous cell hyperplasia and 21 with vulvar lichen sclerosus in order to examine the presence of psychological factors in these dermatologic disorders. Two psychometric tests were used to evaluate depressive status and various aspects of anger. No significant depressive status was diagnosed with the former test either in patients with vulvar squamous cell hyperplasia or in patients with vulvar lichen sclerosus. Patients with squamous cell hyperplasia had two components of anger (state and internal anger) that were significantly higher and three components (trait anger, exteriorization and control of anger) significantly lower than did the controls. In patients with lichen sclerosus all the components of anger were within the normal range. These findings suggest that psychological factors may be associated with vulvar conditions, such as squamous cell hyperplasia, and may have some therapeutic implications in cases resistant to standard treatment.