Pain Characteristics, Psychosocial Wellbeing, and Sexual Wellbeing of Women Diagnosed With Provoked Vestibulodynia and a History of Sexual Abuse.

OBJECTIVE: Provoked vestibulodynia (PVD) is a common chronic pain condition characterized by pain at the vulvar vestibule elicited by touch. Both PVD and sexual abuse lead to negative psychosocial and sexual consequences. However, little is known about the wellbeing of women with PVD and a history of sexual abuse. The aim of this study was to characterize a sample of women seeking treatment for PVD who have experienced sexual abuse. METHODS: A total of 404 women diagnosed with PVD completed self-report questionnaires of PVD symptoms and psychosocial and sexual wellbeing before and after participating in a multidisciplinary PVD treatment program. History of sexual abuse was assessed via self-report, and women were dichotomized into groups. RESULTS: No significant differences were found on sociodemographic variables, baseline psychosocial or sexual functioning between women with and without a self-reported history of sexual abuse (n = 40 and n = 364, respectively). Significantly more women with a history of sexual abuse than without reported other comorbid chronic pain conditions and radiating PVD pain. History of sexual abuse did not affect improvements in sexual distress scores following multidisciplinary treatment for their PVD. CONCLUSION: Ten percent of women in our sample self-reported a history of sexual abuse, but the two groups did not differ significantly with respect to their baseline psychosocial or sexual functioning concerns, and both groups reported reductions in sexual distress following treatment for PVD. These findings indicate that a history of sexual abuse does not significantly affect the efficacy of multidisciplinary treatment approaches for PVD.

A Qualitative Exploration of Women's Experiences of Living With Chronic Vulvar Dermatoses.

BACKGROUND: Many vulvar dermatoses (VDs) are chronic and cannot be "cured," thus affected women must learn to live with the impact of the disease, and its treatment, on their quality of life. AIM: To qualitatively investigate the impact of VDs on women's quality of life through firsthand accounts. METHODS: 12 women, 7 with lichen sclerosus and 5 with erosive vulvovaginal lichen planus recruited from a vulvar disease clinic participated in in-depth, exploratory interviews. Scripts were analyzed by applying a thematic network. The following steps were used: (1) coding the text, (2) development of descriptive themes, and (3) generation of thematic networks. OUTCOMES: The main outcome explored was the narrative experiences of women living with VDs. RESULTS: A global theme of suffering emerged. Themes associated with this suffering were organized under the themes of isolation, interference, and grieving. Women felt isolated because they felt unable to talk about their suffering; experienced a lack of external validation and support; and felt different as individuals, women, and sexual beings. Most women expressed negative views of their genitalia. Women spoke of the VDs, and its management, as interfering with thoughts, activities, and sex life. Symptoms were described as all-encompassing. Women spoke about limiting and/or avoiding daily activities and, in particular, sexual activities. Women described diminished sexual pleasure and experienced loss in their intimate relationships. Women described an ongoing grieving process; anger and sadness over the loss of their former healthy self; the burden of ongoing treatment; and attempts to cope and accept their current condition. CLINICAL IMPLICATIONS: The findings suggest that assessment of women with VDs should include a detailed history of the impact of the VDs on women's psychological and sexual health. STRENGTHS AND LIMITATIONS: A strength of this study is that we openly explored the lived experiences of women who had been clinically diagnosed with vulvar lichen sclerosus and erosive vulvovaginal lichen planus. A limitation is that the findings may not represent the experience of women living with VDs who do not wish to discuss their VDs or who are undiagnosed, untreated, and/or treated by other health-care providers. CONCLUSIONS: Women described profound impact of VDs on psychological and sexual health. Sadownik LA, Koert E, Maher C, et al. A Qualitative Exploration of Women's Experiences of Living With Chronic Vulvar Dermatoses. J Sex Med 2020;17:1740-1750.

Phenotyping Sexual Pain in Endometriosis Using the Central Sensitization Inventory.

INTRODUCTION: Deep dyspareunia, a common symptom in endometriosis, has previously been associated with bladder and/or pelvic floor tenderness (BPFT), which suggests a role for central nervous system sensitization. The Central Sensitization Inventory (CSI, 0-100) is a validated self-reported scale for patients with central sensitization. AIM: The objective of this study was to phenotype deep dyspareunia using BPFT and the CSI. METHODS: The methods included cross-sectional analysis from a prospective registry from January 2018 to June 2018 at a tertiary center for endometriosis (ClinicalTrials.gov #NCT02911090). Included were women aged 18-50 years with endometriosis (previously surgically diagnosed, current visualized endometrioma on ultrasound, or current palpable or visualized nodule on ultrasound), who were newly or re-referred to the center. Severity of deep dyspareunia was self-reported using an 11-point numeric rating scale (0 = no pain; 10 = worst pain imaginable), categorized as no or low deep dyspareunia (0-4) and high deep dyspareunia (5-10). We identified the subgroup with high deep dyspareunia and presence of BPFT, where we hypothesized a central component of the sexual pain. This subgroup was compared with 2 other subgroups: no or low deep dyspareunia and high deep dyspareunia but no BPFT. The CSI was compared between the groups using analysis of variance, followed by post hoc testing (P < .05). MAIN OUTCOME MEASURE: The main outcome measure was the CSI score ranging from 0 to 100. RESULTS: Data from 163 women with endometriosis were analyzed. The mean age of this cohort was 36.4 ± 6.8 years, and the mean CSI score was 41.0 ± 18.6. 37 percent (61/163) had high deep dyspareunia and BPFT; 29% (47/163) had high deep dyspareunia and no BPFT; and 34% (55/163) had no or low deep dyspareunia. The CSI significantly differed between the 3 groups (analysis of variance: F = 22.4, P < .001). In post hoc testing, the CSI was higher in women with high deep dyspareunia and BPFT (51.3 ± 16.9), compared with women with no or low deep dyspareunia (30.9 ± 15.4, P < .001) and compared with women with high deep dyspareunia but no BPFT (39.4 ± 17.2, P = .001). CLINICAL IMPLICATIONS: The CSI could be used to classify and phenotype patients with endometriosis-associated sexual pain. STRENGTH & LIMITATIONS: Strengths include a prospective registry with integrated pain scores, validated questionnaires, and physical examination findings. Limitations include the lack of quantitative sensory testing for central sensitization. CONCLUSIONS: In women with endometriosis, the subgroup with high deep dyspareunia and bladder and/or pelvic floor tenderness had a significantly higher score on the CSI than other subgroups, suggesting that this group may have a central component to their sexual pain. Orr NL, Wahl KJ,Noga H, et al. Phenotyping Sexual Pain in Endometriosis Using the Central Sensitization Inventory. J Sex Med 2020;17:761-770.

A Comparison of Mindfulness-Based Cognitive Therapy Vs Cognitive Behavioral Therapy for the Treatment of Provoked Vestibulodynia in a Hospital Clinic Setting.

INTRODUCTION: Chronic and distressing genito-pelvic pain associated with vaginal penetration is most frequently due to provoked vestibulodynia (PVD). Cognitive behavioral therapy (CBT) significantly reduces genital pain intensity and improves psychological and sexual well-being. In general chronic pain populations, mindfulness-based approaches may be as effective for improving pain intensity as CBT. AIM: To compare mindfulness-based cognitive therapy (MBCT) with CBT in the treatment of PVD. METHODS: To ensure power of 0.95 to find medium effect size or larger in this longitudinal design, we enrolled 130 participants. Of these, 63 were assigned to CBT (mean age 31.2 years), and 67 to MBCT (mean age 33.7 years). Data from all participants who completed baseline measures were analyzed, with intent-to-treat analyses controlling for years since diagnosis. MAIN OUTCOME MEASURES: Our primary outcome was self-reported pain during vaginal penetration at immediate post-treatment and at 6 months' follow-up. Secondary endpoints included pain ratings with a vulvalgesiometer, pain catastrophizing, pain hypervigilance, pain acceptance, sexual function, and sexual distress. RESULTS: There was a significant interaction between group and time for self-reported pain, such that improvements with MBCT were greater than those with CBT. For all other endpoints, both groups led to similar significant improvements, and benefits were maintained at 6 months. CLINICAL IMPLICATIONS: Mindfulness is a promising approach to improving self-reported pain from vaginal penetration and is as effective as CBT for several psychological endpoints. STRENGTH & LIMITATIONS: A strength of the present study was the robust sample size (n = 130 women) who had received confirmed clinical diagnoses of PVD. CONCLUSION: The present study showed mindfulness to be as effective for most pain- and sexuality-related endpoints in the treatment of PVD. Brotto LA, Bergeron S, Zdaniuk B, et al. A Comparison of Mindfulness-Based Cognitive Therapy Vs Cognitive Behavioral Therapy for the Treatment of Provoked Vestibulodynia in a Hospital Clinic Setting. J Sex Med 2019;16:909-923.

Deep Dyspareunia in Endometriosis: Role of the Bladder and Pelvic Floor.

INTRODUCTION: The etiology of endometriosis-associated deep dyspareunia may include direct endometriosis-specific factors (eg, stage or invasiveness of disease) and/or indirect contributors such as bladder/pelvic floor dysfunction (eg, related to myofascial mechanisms or nervous system sensitization). AIM: This study aimed to determine whether bladder/pelvic floor tenderness and painful bladder syndrome were associated with severity of deep dyspareunia in women with endometriosis, regardless of Stage (I/II vs III/IV) or other endometriosis-specific factors. METHODS: Observational study from a prospective patient registry (January 2014 to December 2016) at a tertiary centre for endometriosis. Included were women aged 18 to 49 years who had surgical removal and histopathologic confirmation of endometriosis at the centre. Cases with Stage I/II vs Stage III/IV endometriosis were analyzed separately. Bivariate associations with the primary outcome (severity of deep dyspareunia) were tested for bladder/pelvic floor tenderness, painful bladder syndrome, as well as endometriosis-specific factors identified at the time of laparoscopic surgery (eg, deep infiltrating endometriosis) and demographic factors (eg, age). Multivariable ordinal logistic regression was carried out to adjust for factors associated with the primary outcome. MAIN OUTCOME MEASURE: Primary outcome was severity of deep dyspareunia on an 11-point numeric rating scale, categorized as none/mild (0-3), moderate (4-6), and severe (7-10), from a preoperative self-reported questionnaire. RESULTS: Overall, 411 women had surgically confirmed endometriosis: 263 had Stage I/II and 148 had Stage III/IV endometriosis. Among women with Stage I/II endometriosis, severity of deep dyspareunia was associated with both bladder/pelvic floor tenderness and painful bladder syndrome (AOR = 1.94, 95% CI: 1.11-3.38, P = .019 and AOR = 1.99, 95% CI: 1.15-3.44, P = .013, respectively), independent of endometriosis-specific factors or other factors associated with deep dyspareunia severity. Similar associations were found in women with Stage III/IV endometriosis (bladder/pelvic floor tenderness AOR =2.51, 95% CI: 1.25-5.02, P = .01, painful bladder syndrome: AOR = 1.90, 95% CI: 1.01-3.57, P = .048). CLINICAL IMPLICATIONS: Myofascial or nervous system mechanisms may be important for deep dyspareunia in women with endometriosis, even in those with moderate-to-severe disease (Stage III/IV). STRENGTHS & LIMITATIONS: Strengths include the prospective registry, and histological confirmation of endometriosis and staging by experienced endometriosis surgeons. Limitations include assessment of only one pelvic floor muscle (levator ani). CONCLUSION: In women with Stage I/II or Stage III/IV endometriosis, severity of deep dyspareunia was strongly associated with bladder/pelvic floor tenderness and painful bladder syndrome, independent of endometriosis-specific factors, which suggests the role of myofascial or sensitization pain mechanisms in some women with deep dyspareunia. Orr NL, Noga H, Williams C, et al. Deep Dyspareunia in Endometriosis: Role of the Bladder and Pelvic Floor. J Sex Med 2018;15:1158-1166.

Antenatal Vulvar Pain Management, Labour Management, and Postpartum Care of Women With Vulvodynia: A Survey of Physicians and Midwives.

OBJECTIVE: To examine maternity providers' recommendations for pregnant women with vulvodynia regarding management of vulvar pain and postpartum care, and to examine if, and how, a woman's chronic vulvar pain affects providers' examination and management during labour. METHODS: This research was part of a larger study that invited physicians and midwives to answer a questionnaire regarding pregnancy and childbirth care in women with vulvodynia. To achieve the current objectives, the questionnaire included both dichotomous (yes or no) and open-ended items. The current sample (n = 116) consisted of 75 physicians and 41 midwives. RESULTS: Over 60% of the sample reported making recommendations for vulvar pain management during pregnancy, and 32.8% of providers reported making special postpartum care recommendations for women with vulvodynia. Differences between physicians and midwives were noted for some of these recommendations. For example, to manage vulvar pain, only physicians recommended the use of/change in medications (P <0.001) and only midwives recommended complementary medicines (P = 0.02) and the use of lubricants (P = 0.006) and made recommendations for sexual well-being (P = 0.02). The majority of the sample (75%) reported that a woman having vulvodynia affected labour examination and management; providers most frequently reported minimizing exams and early use of epidural. Over 80% of midwives and 54% of physicians minimized exams during labour for women with vulvodynia (P= 0.01). CONCLUSION: Further research is needed to understand the optimal provision of care for pregnant and postpartum women with vulvodynia. We advocate for increased education of vulvodynia aimed at providers of antenatal, labour, and postnatal care.

Systematic Review of Treatment Outcome Measures for Vulvodynia.

OBJECTIVES OF THE STUDY: To systematically evaluate the literature regarding vulvodynia treatment outcome measures. METHODS: A systematic literature search on OVID, PubMed, and PsycINFO databases was conducted from inception until May 2016. Studies were included/excluded based on prespecified criteria. Reported outcome measures were organized into 6 core outcome domains recommended by the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (IMMPACT): pain; physical functioning, emotional functioning, participant ratings of global improvement and satisfaction with treatment, symptoms and adverse events, and participant disposition. RESULTS: Of the 206 articles identified for full-text screening, 33 met our criteria. One study adhered to all IMMPACT recommendations. The number of outcomes measured per study ranged from 1 to greater than 20. Patient-reported pain outcomes were found in the majority (27/33; 82%) of studies. Pain severity with intercourse was reported by 24 (73%) of 33 studies-9 different scales were used to measure this outcome. Clinician-reported outcomes were present in 14 (42%) of 33 studies. Methods of measuring vestibular sensitivity by "cotton swab" test were different in 8 of 10 studies. Other domains reported included; physical function (8/33 studies; 24%), sexual function (23/33 studies; 70%), and emotional function (13/33 studies; 39%). Symptoms and adverse events were reported by 15 (45%) of 33 studies. One study formally reported participant disposition using all the information recommended by CONSORT. CONCLUSIONS: Comparison of clinical trial results in vulvodynia is not possible because of a lack of standard treatment outcome measures. Vulvodynia researchers should apply the IMMPACT criteria to guide the development of a minimum core set of standard outcome measures that measure holistic health.

The Impact of a Woman's Dyspareunia and Its Treatment on Her Intimate Partner: A Qualitative Analysis.

This study explored the experiences of male partners of women with dyspareunia, secondary to provoked vestibulodynia (PVD), who participated in the Multidisciplinary Vulvodynia Program (MVP). Participants were 16 men between 22 and 45 years of age. Data were collected with semi-structured interviews and analyzed for themes. Men were interviewed about (a) the impact of the woman's PVD on themselves; and (b) the impact of the MVP on themselves. Participants experienced negative psychological effects (e.g., guilt) in addition to activating emotions (e.g., frustration). They reported diminished quantity and quality of sex. In the relationship, PVD caused strain, communication challenges, and possibilities for growth. The benefits, perceived by the partner, of the women participating in the treatment program included improvements in knowledge, communication, and psychological and sexual health.

Clinicians' Perspectives and Experiences Regarding Maternity Care in Women With Vulvodynia.

OBJECTIVE: To assess clinicians' frequency of and comfort with provision of maternity care for women with vulvodynia, their beliefs and practices regarding delivery mode, and frequency of maternal requests for Caesarean section (CS). METHODS: We invited physicians and midwives to complete a questionnaire assessing their frequency of contact with pregnant women with vulvodynia; their level of comfort providing antenatal, intrapartum, and postpartum care for these women; whether they believed that vulvodynia is an indication for elective CS and the frequency of making this recommendation; and the number of patients with vulvodynia who strongly requested CS. RESULTS: Of the 140 participating clinicians, 91 were physicians and 49 were midwives. Most physicians (n = 64; 70.4%) saw patients with vulvodynia at least once per month. Clinicians who saw women with vulvodynia were most likely to see pregnant women with vulvodynia rarely (n = 54; 40.3%) or every six to 12 months (n = 29; 21.6%). Almost one third (n = 44; 31.4%) were not comfortable providing maternity care for these women, and 16.4% (n = 23) agreed that vulvodynia was an indication for elective CS. Of respondents who provided maternity care for women with vulvodynia, 15.4% (n = 18) had recommended CS; the most common reason for doing so was potential worsening of vulvar symptoms. The majority of clinicians who provided maternity care for women with vulvodynia (n = 73; 62.4%) indicated that maternal requests for CS were rare. CONCLUSION: Almost one third of participating clinicians (31.4%) were not comfortable providing maternity care for women with vulvodynia. Despite infrequent maternal requests, a minority of clinicians believed that vulvodynia is an indication for CS and/or made that recommendation. Additional research and education are needed to provide optimal obstetric care for women with vulvodynia.

Impact of a multidisciplinary vulvodynia program on sexual functioning and dyspareunia.

INTRODUCTION: For many years, multidisciplinary approaches, which integrate psychological, physical, and medical treatments, have been shown to be effective for the treatment of chronic pain. To date, there has been anecdotal support, but little empirical data, to justify the application of this multidisciplinary approach toward the treatment of chronic sexual pain secondary to provoked vestibulodynia (PVD). AIM: This study aimed to evaluate a 10-week hospital-based treatment (multidisciplinary vulvodynia program [MVP]) integrating psychological skills training, pelvic floor physiotherapy, and medical management on the primary outcomes of dyspareunia and sexual functioning, including distress. METHOD: A total of 132 women with a diagnosis of PVD provided baseline data and agreed to participate in the MVP. Of this group, n = 116 (mean age 28.4 years, standard deviation 7.1) provided complete data at the post-MVP assessment, and 84 women had complete data through to the 3- to 4-month follow-up period. RESULTS: There were high levels of avoidance of intimacy (38.1%) and activities that elicited sexual arousal (40.7%), with many women (50.4%) choosing to focus on their partner's sexual arousal and satisfaction at baseline. With treatment, over half the sample (53.8%) reported significant improvements in dyspareunia. Following the MVP, there were strong significant effects for the reduction in dyspareunia (P = 0.001) and sex-related distress (P < 0.001), and improvements in sexual arousal (P < 0.001) and overall sexual functioning (P = 0.001). More modest but still statistically significant were improvements in sexual desire, lubrication, orgasmic function, and sexual satisfaction. All improvements were retained at 2- to 3-month follow-up. CONCLUSION: This study provides strong support for the efficacy of a multidisciplinary approach (psychological, pelvic floor physiotherapy, and medical management) for improving dyspareunia and all domains of sexual functioning among women with PVD. The study also highlights the benefits of incorporating sexual health education into general pain management strategies for this population.

Examining perceived cancer risk among patients with neurofibromatosis type 1.

Neurofibromatosis 1 (NF1) is a genetic disorder in which patients are at significantly increased risk for developing malignant peripheral nerve sheath tumors (MPNST) and malignant gliomas (brain cancer). We sought to develop a measure for assessing perceived risk of developing MPNST and brain cancer among patients with NF1 and to examine patients' perceived risk of developing these cancers. We assessed 112 NF1 patients' perceived risk of developing MPNST and brain cancer using an 8-item scale we developed that yielded two subscales in a principal component analysis (PCA). Linear regression models examined factors associated with perceived risk of malignancy. 33.9 % and 47.3 % of patients disagreed that having NF1 placed them at increased risk for MPNST and brain cancer, respectively. The PCA of the perceived risk items yielded a 2-factor solution with an MPNST and a brain subscale (total scale α = 0.90). Level of anxiety was the primary factor associated with perceived risk for both cancers. A significant proportion of NF1 patients underestimate their risk of developing MPNST and brain cancer. Perceived risk was associated with emotional distress, in particular anxiety. Clinicians should actively communicate with NF1 patients about their elevated cancer risk.

Sexual health communication between cancer survivors and providers: how frequently does it occur and which providers are preferred?

BACKGROUND: Sexual health concerns in cancer survivors are often unaddressed by providers. Study objectives were to assess cancer survivors' reported rates of communication with oncology providers about sexual health, preference for such communication with their oncology or primary care providers (PCPs), and factors associated with these communication rates and preferences. METHODS: Sixty-six patients attending a cancer survivorship clinic were asked how often their oncologist addressed and initiated discussion about sexual functioning and whether they wanted their oncologist or PCP to ask about their sexual health. We also assessed whether various sociodemographic characteristics and levels of depression, anxiety, and sexual satisfaction were associated with survivors' sexual health communication rates and preferences. RESULTS: 41% of patients wanted their oncologist to ask about sexual health and 58% of patients wanted their PCP to ask about sexual health. Over 90% of patients reported that their oncologist infrequently addressed sexual health concerns and that their oncologist was unlikely to initiate such discussions. Education level influenced whether patients wanted their oncologist to ask about sexual health. Age, education level, and insurance type influenced whether patients wanted their PCP to ask about sexual health. Levels of depression, anxiety, and sexual satisfaction were not associated with communication rates or preferences. CONCLUSIONS: Patients attending a survivorship clinic reported infrequent communication about sexual health with their oncology providers, despite wanting their providers to ask about sexual health concerns.

Differential Associations of Communication and Love in Heterosexual, Lesbian, and Bisexual Women's Perceptions and Experiences of Chronic Vulvar and Pelvic Pain.

The literature on genital and pelvic pain has largely focused on heterosexual women. An online study examined characteristics of vulvar pain in 839 lesbian, bisexual, and heterosexual women 18-45 years of age and investigated associations between relationship qualities such as love and communication with participants' perceptions of pain's influence on relationships. Characteristics of vulvar pain were similar across groups. Groups differed in how they perceived pain to impact their relationships, such that better communication for same-sex couples and more love for mixed-sex couples was associated with the perception of their pain as having less of an effect on their relationship functioning.

Sexual function, relationship adjustment, and the relational impact of pain in male partners of women with provoked vulvar pain.

INTRODUCTION: Despite the impact of provoked vulvar pain on women's sexuality and the partnered sexual context in which the pain typically occurs, partners have not been included widely in research. AIMS: To examine sexual and relationship functioning of male partners of women with provoked vulvar pain symptoms using a controlled design and to assess the impact of the pain on their relationship. METHODS: Fifty male pain partners and 56 male controls completed questionnaires to assess sexual communication, sexual functioning/satisfaction, sexual esteem, relationship adjustment, and psychological health. Participants also completed numeric rating scales to assess the importance of sex to them and the extent to which they felt their relationship matched a satisfying relationship. To assess the relational impact of vulvar pain, pain partners were asked to indicate whether the pain had impacted their relationship, and, if yes, rated this impact. MAIN OUTCOME MEASURES: Main outcome measures included the Dyadic Sexual Communication Scale, the International Index of Erectile Function, the Sexuality Scale, the Dyadic Adjustment Scale, the 12-Item Short-Form Health Survey, and numeric rating scales. RESULTS: Pain partners reported significantly poorer sexual communication and erectile function and less sexual satisfaction compared with controls. They also reported significantly less affectional expression within their relationships and were more likely than controls to report a discrepancy between their relationship and their idea of a satisfying relationship. Almost 73% (n = 32/44) of pain partners reported a negative relational impact of vulvar pain. No significant differences in sexual desire, orgasmic function, sexual esteem, relationship satisfaction and consensus, psychological health, or importance of sex were found between groups. CONCLUSIONS: Provoked vulvar pain partners appear negatively impacted with regard to some sexual and physical aspects of their relationship. As one of the few controlled studies to investigate partner functioning in the context of provoked vulvar pain, this study has future research implications and supports the involvement of partners in treatment.

Sexual and relationship satisfaction and vestibular pain sensitivity among women with provoked vestibulodynia.

INTRODUCTION: Provoked vestibulodynia (PVD) is a common cause of painful intercourse. Despite the fact that PVD is associated with high levels of pain and negative impact on women's sexuality, research has not examined associations between affected women's pain sensitivity and their sexual and relationship satisfaction. AIMS: This study aimed to examine sexual and relationship functioning/satisfaction and vestibular pain sensitivity among PVD-affected women, and potential associations between these variables. METHODS: Participants were 17 women with PVD and 17 matched controls. Women were assessed via a gynecological examination, structured interview, and the Female Sexual Function Index (FSFI), Golombok Rust Inventory of Sexual Satisfaction (GRISS), and Dyadic Adjustment Scale (DAS). Additionally, women completed a quantitative sensory testing session to assess vestibular pain thresholds and associated pain ratings; specifically, vestibular pressure-pain and heat pain thresholds were measured. MAIN OUTCOME MEASURES: Gynecological and intercourse pain ratings; FSFI; GRISS; DAS; vestibular pressure-pain threshold; and vestibular heat pain thresholds. RESULTS: PVD-affected women reported significantly decreased sexual function in comparison with controls. While no differences in relationship satisfaction were found between groups, women with PVD did report less sexual satisfaction on the FSFI. PVD-affected women also reported significantly higher vestibular pain ratings associated with the gynecological examination and heat pain tolerance procedures, and lower pressure-pain threshold, heat pain threshold, and heat pain tolerance at the vestibule in comparison with controls. Among women with PVD, lower heat pain threshold was associated with less sexual satisfaction, and higher pain ratings related to intercourse and heat pain tolerance, respectively, were associated with lower sexual function and satisfaction. CONCLUSIONS: The results indicate that women with PVD experience negative sexual effects and increased pain sensitivity. This study also suggests that some aspects of pain may be related to lower levels of sexual function and satisfaction among affected women.

Appearance concerns among women with neurofibromatosis: examining sexual/bodily and social self-consciousness.

OBJECTIVE: Neurofibromatosis (NF) 1 and 2 have distinct appearance effects, yet little research has examined patients' appearance concerns. We assessed appearance concerns and self-consciousness, self-esteem, and loneliness among women with NF. METHODS: Women with NF1 (n = 79) and NF2 (n = 48) completed the Derriford Appearance Scale to assess appearance concerns and sexual/bodily and social self-consciousness, Rosenberg Self-Esteem Scale, and UCLA Loneliness Scale. Women's appearance concerns were coded to determine whether they were NF-related and whether psychosocial factors contributed to the concerns. RESULTS: A total of 85% of women reported appearance concerns, many of which were NF-related and attributed to psychosocial factors. Women with NF1 reported significantly more sexual/bodily self-consciousness but similar levels of social self-consciousness compared with women with NF2. Significantly higher sexual/bodily self-consciousness was found among married/cohabiting women regardless of NF group. Compared with general population norms and breast cancer survivors (BCS), women with NF1 reported significantly greater sexual/bodily and social self-consciousness. Women with NF2 reported less sexual/bodily self-consciousness compared with population norms, yet tended to report greater sexual/bodily self-consciousness than BCS. Women with NF2 reported significantly greater social self-consciousness compared with population norms and BCS. For both NF1 and NF2, higher levels of sexual/bodily and social self-consciousness were related to lower self-esteem and higher levels of social self-consciousness to more loneliness. CONCLUSIONS: Appearance concerns are prevalent, and social self-consciousness is high, among women with NF1 and NF2. Women with NF1 compared with NF2 experience more sexual/bodily self-consciousness. Providers should assess the impact of NF on women's self-perceptions and address sexual, body image, and social concerns.

Pilot study of radical hysterectomy versus radical trachelectomy on sexual distress.

Radical trachelectomy, which leaves the uterus intact, has emerged as a desirable surgical option for eligible women with early-stage cervical cancer who wish to preserve fertility. The available data suggest excellent obstetrical outcomes with radical trachelectomy, and no differences in sexual responding between radical trachelectomy and radical hysterectomy. There is a need to examine the effect of radical hysterectomy on sexual distress given that it is distinct from sexual function. Participants were 34 women diagnosed with early-stage cervical cancer. The authors report 1-month postsurgery data for 29 women (radical hysterectomy group: n = 17, M age = 41.8 years; radical trachelectomy group: n = 12, M age = 31.8 years), and 6-month follow-up data on 26 women. Whereas both groups experienced an increase in sex-related distress immediately after surgery, distress continued to increase 6 months after surgery for the radical hysterectomy group but decreased in the radical trachelectomy group. There were no between-group differences in mood, anxiety, or general measures of health. The decrease in sex-related distress in the radical trachelectomy but not in the radical hysterectomy group suggests that the preservation of fertility may have attenuated sex-related distress. Care providers should counsel women exploring surgical options for cervical cancer about potential sex distress-related sequelae.

Emotional functioning of patients with neurofibromatosis tumor suppressor syndrome.

PURPOSE: Although patients with neurofibromatosis are predisposed to multiple nerve sheath tumors that can develop anywhere in the body and cause significant morbidity (e.g., hearing loss; pain), little research has examined emotional correlates of neurofibromatosis. The purpose of this study was to examine emotional functioning among adult patients with neurofibromatosis. METHODS: A total of 248 patients with neurofibromatosis (neurofibromatosis 1, neurofibromatosis 2, or schwannomatosis) who received care at a specialized clinic completed validated measures to assess symptoms of depression and anxiety, level of perceived stress, and self-esteem. RESULTS: Patients with neurofibromatosis reported significantly more symptoms of depression and anxiety, higher levels of perceived stress, and lower levels of self-esteem as compared with general population norms. No significant differences were found among patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis, and emotional functioning was not significantly associated with disease severity. However, increased symptoms of depression and anxiety, higher levels of perceived stress, and lower levels of self-esteem were associated with a higher frequency of self-reported medical visits in the past year (P values ≤0.05). CONCLUSION: Neurofibromatosis appears to be associated with reduced emotional functioning. Although further research is needed, these findings suggest a role for a multidisciplinary treatment approach to address emotional distress among adult patients with neurofibromatosis.

A longitudinal case-control analysis of pain symptoms, fear of childbirth, and psychological well-being during pregnancy and postpartum among individuals with vulvodynia.

OBJECTIVE: Little research has examined changes in chronic vulvar pain (vulvodynia) symptoms with pregnancy and childbirth, nor fear as it relates to pregnancy/delivery amongst individuals with vulvodynia. The purpose of this study was to examine change in pain symptoms from pregnancy to postpartum amongst women with vulvodynia, as well as pain anxiety, fear of childbirth, and anxiety and depressive symptoms. DESIGN: Prospective Case-Control Study. SETTING: Online survey. PARTICIPANTS: Fifty-Seven pregnant individuals with a diagnosis of vulvodynia, and 41 pregnant control participants who reported being free of vulvar pain. Participants were recruited from the community and from hospital-based clinics for this study. MEASUREMENTS AND FINDINGS: Online surveys were administered to women diagnosed with vulvodynia and pain-free control participants during pregnancy and at three and six months postpartum. The survey contained both investigator-developed items and validated questionnaires, including the Pain Anxiety Symptoms Scale (PASS-20), the Wijma Delivery Expectancy/Experience Questionnaire (W-DEQ) to assess fear of childbirth, the Generalized Anxiety Disorder-7 (GAD-7) measure to assess symptoms of anxiety, and the Patient Health Questionnaire (PHQ-9) to assess symptoms of depression. Linear mixed models with random intercepts for longitudinal analyses indicated statistical improvements for most of the vulvar pain outcomes in the postpartum period amongst women with vulvodynia, including reduced pain intensity at three (p = 0.005) and six months (p = 0.013) postpartum for those women who delivered vaginally. The mean change in pain intensity corresponded though to only a minimal clinical change. Compared to controls, women with vulvodynia reported higher levels of fear of childbirth on the W-DEQ (p = 0.024). In both groups, increases in general anxiety on the GAD-7 were found from pregnancy to three (p = 0.005) and six months (p = 0.033) postpartum. Mode of birth moderated the findings for pain-related anxiety as measured by the PASS-20: only individuals who delivered via caesarean section reported increases in pain anxiety between pregnancy and six months postpartum (p < 0.001). KEY CONCLUSIONS: Pregnant women with vulvodynia experienced postpartum improvements in vulvar pain symptoms. Mode of birth may play a role in symptom trajectory. IMPLICATIONS FOR PRACTICE: Individuals with vulvodynia often have concerns about how pregnancy and childbirth will impact their symptoms. The current findings can be used to help such individuals make reproductive decisions knowing there may be improvements in vulvar pain and increases in anxiety that can occur postpartum. The statistical versus clinical significance of the pain intensity results also highlight the importance of asking each individual what changes in pain symptoms they experience and the meaning of such changes for that person.

Dyspareunia in Their Own Words: A Qualitative Description of Endometriosis-Associated Sexual Pain.

INTRODUCTION: Dyspareunia has been called the neglected symptom of endometriosis and is underexplored in clinical and research contexts. Understanding the physical experience and patient-important aspects of endometriosis-associated sexual pain can help advance valid measurement of this symptom. AIMS: The goal of this research was to characterize the physical experience of endometriosis-associated dyspareunia in the words of people affected by this condition. METHODS: This was a qualitative descriptive study that included participants with current or previous endometriosis-associated dyspareunia recruited from a data registry. Data collection involved semistructured interviews that began with an open-ended question about dyspareunia followed by prompts related to the nature of sexual pain. MAIN OUTCOME MEASURES: Interviews transcripts were subjected to qualitative content analysis using a priori (pain site, onset, character, radiation, associations, time course, and exacerbating/relieving factors) and emergent themes. RESULTS: A total of 17 participants completed interviews. Mean participant age was 33.3 years and most were identified as white, college-educated, heterosexual, and partnered. Location, onset, and character were important; interrelated features of endometriosis-associated dyspareunia were: (i) introital pain began with initial penetration and had pulling, burning, and stinging qualities and (ii) pelvic pain was experienced with deep penetration or in certain positions and was described as sharp, stabbing, and cramping. Dyspareunia ranged from mild to severe, had a marked psychosocial impact for some participants, and was managed using a variety of treatments and strategies. CONCLUSION: The endometriosis-associated dyspareunia experienced by participants was heterogenous in presentation, severity, and impact. Our findings have implications for the development of valid patient-reported outcome measures of this symptom. Wahl KJ, Imtiaz S, Lisonek M, et al. Dyspareunia in Their Own Words: A Qualitative Description of Endometriosis-Associated Sexual Pain. Sex Med 2021;9:100274.