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ORIGINAL RESEARCH Motives for Vulvar Surgery of Women with Lichen Sclerosus Marieke Brauer, PhD,* Rik van Lunsen, MD, PhD,* Matthé Burger, MD, PhD,† and Ellen Laan, PhD* *Department of Sexology and Psychosomatic Obstetrics and Gynecology, Academic Medical Center, Amsterdam, The Netherlands; †Department of Obstetrics and Gynecology, Academic Medical Center, Amsterdam, The Netherlands DOI: 10.1111/jsm.13052

ABSTRACT

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. Brauer M, van Lunsen R, Burger M, and Laan E. Motives for vulvar surgery of women with lichen sclerosus. J Sex Med 2015;12:2462–2473. Key Words. Lichen Sclerosus; Sexual Dysfunction; Dyspareunia; Motives; Vulvar Surgery; Qualitative Design

Introduction

L

ichen sclerosus (LS) is a chronic inflammatory skin disease of the anogenital area, presumably having an auto-immune etiology [1]. The disease occurs in women of all ages, but especially in the older ones. Goldstein and co-workers found a prevalence of vulvar LS in a U.S. general gynecology practice of 1.7% [2]. The true incidence and prevalence of LS are unknown because of the variety of medical disciplines involved in treating

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LS, the asymptomatic nature of this disease in some women, and the frequent misdiagnosis of this condition [3]. In female patients, LS may lead to anatomical changes: resorption of the labia minora, clitoral phimosis, labial fusion, and narrowing of the vaginal entrance (i.e., introital stenosis). The epithelium may show changes such as thinning and fine wrinkling (“cigarette paper,” atrophy), patchy white discoloration (hypopigmentation), fissures and erosions, and small foci of bleeding underneath the epithelium (purpura, ecchymosis). Symptoms © 2015 International Society for Sexual Medicine

Motives for Vulvar Surgery of Women with Lichen Sclerosus include vulvar itching, irritation, burning, and pain, which may cause significant emotional distress and sexual difficulties [4,5]. Although there are limited data on sexual functioning of women diagnosed with LS, the few studies available indicate that sexual dysfunctions and sexual distress are common [6–11]. Findings suggest that approximately 75% of women with LS experience dyspareunia due to erosions, fissures, or introital stenosis [6]. Repetitive painful vaginal penetration may result in diminished sexual arousal and vaginal lubrication, and in an inability to relax the pelvic floor muscles on subsequent intercourse occasions because of anticipated pain, which, consequently, aggravates symptoms [12,13]. A recent explorative qualitative analysis of the posts of female LS patients at the online forum of the Dutch LS community showed that sexuality-related concerns were among the most popular topics. Many women raised concerns about painful intercourse or the impossibility of vaginal penetration, fear or avoidance of sexual activity, decreased sexual interest, and decreased sexual intimacy with the partner [14]. In addition, clinical experience reveals that a considerable number of female patients with LS express the need for improved sexual functioning, including the ability to engage in intercourse. Together, these findings emphasize the need to consider sexual functioning when treating women with LS. Standard treatment for LS—ultrapotent topical corticosteroids [3,15,16]—is aimed at symptom reduction, but findings suggest that this treatment does not alleviate sexual problems significantly [11]. For the relief of dyspareunia or the inability to have penile–vaginal penetration due to anatomical (i.e., narrowing of the vaginal entrance) or epithelial (e.g., painful fissures) changes, vulvar surgery may be offered. Posterior vestibuloplasty (perineoplasty) [17,18] is indicated when dyspareunia is caused by narrowing of the vaginal entrance and/or epithelial fissures of the posterior vestibulum (fourchette). When adhesions of left- and right-sided inner vulvar surfaces (and labia) in the anterior vestibulum contribute to narrowing of the vaginal opening and fissures in the midline, an anterior vestibuloplasty with free vaginal graft can be performed (M. Burger, Academic Medical Center, University of Amsterdam, Amsterdam, manuscript in preparation). It is unexplored how many women with LS with a desire to have intercourse opt for vulvar surgery, and what motives underlie this wish to regain the ability to have sexual intercourse. It is well known

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in the literature that for many women, intercourse is not the most sexually stimulating sexual activity [19,20], and intercourse results in orgasm in only about 25–30% of heterosexual women. If coitus represents the sole source of sexual activity, this may result in a lack of sexual arousal and lubrication, which, in turn, may cause (somatically unexplained) dyspareunia [12,13,21]. So, knowledge about women’s underlying motives for a reconstructive surgical procedure is indispensable for preventing potential patient dissatisfaction and disappointment. The present study aims to yield a more contextualized and detailed understanding of these women’s motives using qualitative methodology. We therefore interviewed 19 women with biopsy-proven LS who underwent a reconstructive surgical procedure aimed at restoring their ability to have intercourse about their motives for having this surgery. Methods

Participants In the 5-year period from 2008 up to and including 2012, a total of 23 patients with histologically confirmed LS underwent a surgical procedure of the vulva in our hospital. All of these heterosexual women experienced (superficial) dyspareunia or the inability to have sexual intercourse due to anatomical (i.e., narrowing of the vaginal entrance) or epithelial (e.g., painful fissures) changes. In all patients, surgery was performed for the relief of sexual problems and was communicated as such with the patients. They were also informed that LS is a slowly progressive disease with wide interindividual variation in terms of disease burden, and that it was therefore difficult to predict how long they might benefit from the surgery. When the present study started, two patients had developed cancer (vulvar carcinoma and rectal adenocarcinoma, respectively), and they were not invited by the investigators to participate. When being contacted, two women decided not to participate because they were in a stressful period of their life (not related to LS symptoms) and were afraid that the interview would be emotionally taxing. Therefore, the study sample consisted of 19 patients. Their ages ranged from 30 to 72 years (mean = 56.2, SD = 10.4). Eighteen women (94.7%) were involved in a long-lasting relationship, with a range from 11 to 58 years (mean = 35.8, SD = 12.3), and all these women cohabited with their partner. One woman was involved in a relationship at the time of surgery, but was single at the time of the interview. J Sex Med 2015;12:2462–2473

2464 For 12 participants (63.2%), their current partner was also their first sexual partner with whom they had had sexual intercourse. Two women (10.5%) had had two sexual partners, and five women (26.3%) had had several sexual partners. Fifteen women (78.9%) had children. With respect to complaint characteristics and surgery details, the diagnosis of LS was established minimally 1 year and 3 months before surgery and maximally 32 years. It should be noted here that the majority of women had experienced vulvar complaints for many years, which might have been LS symptoms but were not recognized as such. Standard medical treatment was the topical application of 0.05% clobetasol propionate ointment once daily for 1–4 days per week and a moisturizing cream once or twice daily. All of the 19 patients underwent a posterior vestibuloplasty with advancement of the posterior vaginal wall (see Woodruff et al. [17]). Four of these 19 patients also had an anterior vestibuloplasty with free vaginal graft. Four of the 19 patients also underwent surgical dehooding of the glans of the clitoris because of phimosis for the purpose of restoration of the vulvar architecture and the prevention of complications due to accumulation of keratin. One of the 19 patients underwent all of the three procedures described. One senior gynecologist (third author) performed the surgery in all patients. A plastic surgeon performed the surgery with free grafts of vaginal epithelium (in five women). The minimum period between surgery and the interview was 10 months, and the maximum period was 5 years and 2 months (median = 2 years and 5 months). The Medical Ethical Committee of our hospital declared that the Medical Research Involving Human Subjects Act (WMO) of the Netherlands did not apply to our study, and as such, official approval of the committee was not required.

Interview and Procedure The face-to-face in-depth interviews were held in a private setting (i.e., the respondent’s home or a in a consulting room in the hospital). Prior to the interview, the study purposes and procedures were explained, and informed consent was obtained. Women were informed that the purposes of the study were (i) to gain a better understanding of the effects of LS on sexual functioning; (ii) to explore the women’s motives for the surgery and how they had come to opt for surgery; and (iii) to explore surgery outcomes. Participants were assured that their responses would be confidential and that the gynecologist/surgeon would be blinded to indiJ Sex Med 2015;12:2462–2473

Brauer et al. vidual responses. Given the sensitive nature of the topics, it was explained to the participants that there were no right or wrong answers. It was further stressed that they did not need to answer any questions that they did not feel comfortable answering, and the women were assured of the opportunity to withdraw from the interview at any moment. No one withdrew from the interview, nor were there any questions women refused to answer. The in-depth interviews were directed by an interview guide to ensure that all main topics were explored (see Appendix A). Questions were as open as possible and were carefully worded to avoid implicit assumptions or reinforce normative ideas about (hetero)sexuality. Follow-up questions were based on issues the participants brought up and aimed at exploring the topic further. Participants were encouraged to communicate the salient features of their experiences in their own words. Relevant terms used by the interviewer were explained. That is, the term “intercourse” was used as a synonym for “penile–vaginal penetration,” and the word “sex” was used as a collective term for nonpenetrative and penetrative sexual activities. In this article, qualitative data on women’s underlying motives for wanting to re-experience sexual intercourse are presented. The qualitative data on the sexual consequences of LS and treatment satisfaction will be reported elsewhere. Interviews were conducted by the first author, with a background as researcher and therapist in women’s sexual health, and an assistant trained by the first author. Both interviewers were experienced in qualitative interviewing. The interviews were audiotaped and lasted between 70 and 210 minutes. The women received €50 for participation. The qualitative interviews were collected in the period February–December 2013.

Data Analysis Interviews were transcribed verbatim, except for names, dates, and locations, which were substituted with codes to ensure confidentiality. The transcripts were imported in nvivo 10 [22]. After having carefully read and reread the transcripts, the coding of the interviews started. Coding entails (i) compiling a list of defined codes (the codebook) corresponding to themes observed in a text and (ii) judging for each predetermined segment of text whether a specific code is present. For each code, a set of rules is derived by which the coders decide whether a specific unit of text is or is not an instance of that code [23]. The process of coding text entailed several steps for several times

Motives for Vulvar Surgery of Women with Lichen Sclerosus in iteration: segmentation of text, codebook creation, coding, codebook modification, and, again, coding, etc. In line with the constant comparative method [24], in next code rounds, new interview data were compared with previous data to identify similarities and differences. As a means to achieve reliable coding, transcripts were independently coded by the first author and a research assistant. In several code rounds, they met together to compare coding. Differences in coding were discussed until consensus was reached. The codes were grouped into conceptual categories, and the interrelationships were discussed between the coders. Conceptual saturation was reached when no new categories were generated. To avoid potential researcher bias, discovered patterns and themes were discussed with the entire research team at a regular basis. Results

When participants were directly asked what their reasons had been for wanting to undergo surgery, all women unanimously responded that they had hoped that the surgery would enable them to have penile–vaginal penetration postoperatively. For example, Participant 17, a 60-year-old woman, stated: “I want to have normal intercourse too, as it should be.” Besides the wish to re-experience intercourse, another reason for surgery was to reduce LS symptoms in daily life, which will be elaborated upon at the end of the results section. Why was it so important for these women to be able to have sexual intercourse again? The findings on women’s underlying motives for wanting to be able to re-experience sexual intercourse were categorized into three main themes: (i) the desire to be a normal woman; (ii) the desire to sexually satisfy the male partner; and (iii) the desire to regain the experience of intimacy and sexual enjoyment. For a better understanding of these themes, it is necessary to first describe women’s sex life before the LS diagnosis. For the sake of clarity, we use the terms “intercourse” and “coitus” interchangeably with “penile–vaginal penetration” and “sex” as a collective term for both nonpenetrative and penetrative sexual activities. Before intercourse became painful, the sex life of all women and their partners mainly consisted of penile–vaginal penetration. Other types of sexual activity were perceived solely as foreplay or extras but not as worthy alternatives to intercourse. Instead, nonpenetrative sexual activities were often regarded as an introduction to inter-

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course, pointing to the central position of coitus in the sex life of these women and their partners. Participant 1, a 62-year-old woman, stated: “To me it [coitus] is part of it. Yes . . . Otherwise it’s not complete.” More strongly, almost all participants equated sex with intercourse, as illustrated by the following quote from Participant 12, a 53-year-old woman, when she was asked for what reasons she had wanted surgery: “To become a woman again that can have sex too. And with sex you mean? Fucking.” When intercourse became painful or impossible due to the LS-related symptoms, many women and their partners had struggled to “reshape” their sexual relationships because they found it difficult to think of sex as anything other than intercourse. Most women and their partners tried to engage in (painful) intercourse as long as possible. Eleven of the 19 women had ceased painful intercourse (attempts) preoperatively, whereas the other women still persisted in painful intercourse from time to time, with a decreasing frequency, increased avoidance of sexual/physical contact, and comorbid sexual problems such as lack of sexual desire and arousal. Only two couples stopped having intercourse when it started to become painful. Participant 13, a 45-year-old woman, stated: “Sex is supposed to be fun; I am not having intercourse if it hurts.”

The Desire to Be a Normal Woman Women regarded having sexual intercourse as essential to their womanhood. Participant 8, a 62-year-old woman, stated: “Part of my womanhood is, that a man can have sex with me in that way [intercourse].” Since intercourse was seen as the only “real” and “normal” form of sex, the sexual pain and/or inability to engage in intercourse profoundly affected participants conceptions of womanhood. That is, as a consequence of not being able to have pain free sexual intercourse any longer, many patients positioned themselves as abnormal or incomplete. Participant 7, a 62-yearold woman, stated:“Because you can’t do it [coitus] anymore, because it doesn’t work anymore, you get this feeling of incompleteness . . .” She further stated: “Anybody can do it. Anyone can do the deed. What has happened that I can’t do it anymore?” Representative for nearly all women, this quote illustrates that having sexual intercourse per se is an affirmation of being a normal woman. Most participants kept trying to engage in intercourse despite pain and tissue damage to maintain their status of a “normal” woman. Because intercourse became more problematic or even impossible over time, J Sex Med 2015;12:2462–2473

2466 participants felt that they were “less (worthy as a) woman,” in terms of no longer being able to give themselves sexually to their own partner. For instance, Participant 12, a 53-year-old woman, stated: “As a human being one has several roles. And being a woman, a sexually active woman, is one of those roles. In my opinion I failed there. That in some respect I was unable to give him what he wanted in the relationship.” Women described feeling less sexually attractive toward their partner due to their “failing” bodies. Participant 8, a 62-year-oldwoman stated: “Actually, I didn’t want to show myself like that anymore, physically, with my husband . . . you think of yourself as becoming less attractive then . . . that you cannot offer the other the possibility to have sex with you anymore. You can’t offer that anymore literally, because it hurts, and it is unpleasant, and it is a fuss. And then you think, yes, in that respect you’re of no value to the other anymore. And then you consider your body somewhat less valuable, and then you neglect yourself a bit.” Apparently, experiences of “sexual inadequacy” and/or being “sexually unavailable” were especially relevant in relation to the partner. Their sexual “abnormality” was invisible to the outside world, as the following quote from Participant 9, a 56-year-old woman, exemplifies: “It doesn’t take away your femininity, it doesn’t rob you of your female physical sides. Not that. I mean, you wear panties over it, and nobody can see anything.” Other women felt insecure or less valuable as sexual women in general. Participant 3, a 58-year-old woman stated:“Very often I think ‘There I go, but I’m not 100% anymore’ . . . The rest of the world doesn’t know, like, ‘Hey, this lady’s vagina is causing her problems, she can’t fuck anymore, and, eh . . .’ While they’re looking at you, and make eyes at you, and this and that. And then I think to myself, ‘Yeah, if only you knew.’ You can be nice to me, but really, fucking is out of the question. You understand? I used to be a flirt too. I never did anything, but I did flirt with other men. And now you stopped that completely, because you know . . . I think that is the mental part of me, like ‘Yeah, you can be charming to somebody, or dally a bit, but you know that you won’t . . . You’re not even able to get it on with your own husband, let alone with somebody else.’ ” Thus, women hoped that surgery would help them to regain their femininity by enabling them to once again engage in vaginal penetration. Although not all women linked their wish for surgery directly to their conceptions of themselves as being abnormal or incomplete, some mentioned this explicitly. Participant 11, a 52-year-old woman, stated “then [after surgery] I am a normal woman again, who is functioning properly again.” J Sex Med 2015;12:2462–2473

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The Desire to Sexually Satisfy the Male Partner Their partner’s sexual pleasure was of great importance to the women. Throughout the interviews, many partner-related reasons for engaging in sex, including intercourse, were mentioned (e.g., to show him her love, to not disappoint the partner, to comfort him, to avoid conflicts). Some believed that, within a marriage, the husband has a right to have sex, as illustrated by the following quote from Participant 2, a 64 year-old-woman, when she was asked why she kept engaging in painful intercourse with her husband: “To satisfy my husband. Because I thought he deserved that.” She further stated: “I could always get out of it, but that’s not what you wanted for him, really. So I allowed it. But it was not pleasant.” Women positioned themselves as loving and caring toward the male partner. They felt responsible for accommodating their partners’ sexual needs and maintaining his sexual satisfaction. Participant 5, a 72-year-old women, stated: “He did have that need. And he was my husband. And I loved him. And I wanted to give him all he desired. That’s what I still want. I want to give him everything he likes. Because I love him. . . .” She further stated: “It wasn’t pleasant for me anyway. So what’s the difference? Whether I do it, or not. He does enjoy it. So go ahead.” And, Participant 15, a 36-year-old woman, stated: “Of course I don’t like it, when you have to disappoint your partner. Yes, that’s how it feels, if you can’t gratify his desires, in the way it should be, as the books say so to speak.” Participants believed or knew that their partner found intercourse the most important and enjoying sexual activity. Participant 11, a 52-year-old woman, stated: “Until that time [until intercourse became painful] our sex always included penetration, really. With very little variation. We did do different positions sometimes, but rarely. Because [name partner] said: ‘that’s what I like best’ ” Due to their experiences with painful intercourse or the impossibility to engage in intercourse, women regarded themselves as inadequate in satisfying the perceived needs of their partner and felt guilty for that. They felt regret for their partner that he was also a “victim” of the disease. Women were highly concerned about the impact of their sexual problems on the quality of their (sexual) relationship. As intercourse was seen as the ultimate form of being intimate with the partner, women were afraid that they and their partners would be drifting apart. Some had also experienced that there were more irritations in the relationship since the onset of the sexual problems.

Motives for Vulvar Surgery of Women with Lichen Sclerosus Although some women were convinced that their relationship was strong enough to deal with the sexual sequelae of the disease, about half of the women feared or had feared for a while that their partner would leave or cheat on them since they believed that they could not give him what he needs. Participant 4, a 63-year-old woman stated: “Of course there was a time, oh god, when, if he looked at another woman, I thought ‘Oh god, my marriage has had it.’ Of course, that’s what men always do. But then, at some point, when you know, well, he can’t do anything with me anymore . . .” And, Participant 12, a 53-year-old woman, stated: “My worst-case scenario is that [name of spouse] looks for someone else. I mean, he can have sex, I can’t have sex. So he can do it, get it somewhere else.” When intercourse became more difficult or impossible, about one-third of the women had offered their partner to divorce or to have sex with other women (e.g., prostitutes). Participant 6, a 64-year-old woman, stated: “Once or twice I said ‘Go visit a prostitute. Go ahead.’ But then there was this voice in me that thought ‘Oh no, please don’t.’ But I did tell him sometimes ‘Go to a prostitute.’ Because, of course, I was a bit scared, you know . . . I mean, you’re young, he’s young. That he might think after all ‘Well, I’ll find another, if I can’t get it from you . . .’.” Partners were generally spoken of as supportive and understanding with respect to the women’s sexual complaints due to LS. Participant 2, a 64-year-old woman, stated: “[He acted] very positive towards me. Not that he held it against me. He never blamed me, for not getting any, or whatever. Never. But he regretted it. Because it . . . yes, it is, as I said before, something that is part of life.” It often was the male partner who wanted to stop with painful intercourse (attempts) because he did not to want to hurt her. Participant 3, a 58-year-old woman stated: “Before me he said . . . I still wanted to try it . . . ‘Cause I think, yeah, I just want to have a good fuck, and eh . . . But he thought that was awful. He felt, and rightly so, that he hurts me badly . . . He says ‘That is not what our relation is founded on. We both simply have to like it, to enjoy it, and get pleasure from it. I can’t have pleasure if you are in pain. So we quit this.’ So basically he made that decision for me. Because I was being a bit of a smart-ass, still wanting to try it. Because it was very important to me.” Even when the couple had satisfactorily reshaped its sexual relationship without intercourse, women still had difficulty regarding themselves as an adequate sexual partner. It was also hard for some women to trust their partner’s “acceptance” of a sex life without coitus. Participant 18, a 30-year-old woman,

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became suspicious when her partner told her that “he had always gotten what he needed”: “And then I thought: What? Did he cheat on me? I was really shocked. And then he said ‘No, because we can have sex, can’t we? Just not that.’” Participant 15, a 36-yearold woman, stated: “In retrospect it appeared that he had an affair. For some years, actually . . . Looking back I’d say, yes, but now I understand why you didn’t care one way or the other.” In sum, the wish to become a sexually adequate partner again who is able to sexually satisfy the male partner by means of intercourse was a strong motivation for surgery. None of the women felt that their decision for surgery was forced by their partner. However, thinking that the partner prefers to have coitus and being aware of his disappointment, or other negative (non)verbal reactions about the frequency and nature of sexual contact, induced feelings of being pressured or feelings of guilt. Some partners were perceived as less supportive and understanding with respect to sexual pain when the diagnosis of LS had not yet been established. A few women expressed that LS would probably not have such a tremendous impact if they had not been involved in a relationship. When women were asked if they would have decided on surgery had they been single, almost all women responded confirmatively. Women were convinced that a new partner would not be interested in a woman who is unable to engage in sexual intercourse. The inability to have (pain-free) intercourse would withhold them from approaching other men, as illustrated by Participant 1, a 62-year-old woman: “I cannot engage in a sexual relationship. I dare not. I can’t offer that man anything, can I?”

The Desire to Regain the Experience of Intimacy and Sexual Enjoyment As a consequence of repetitive painful intercourse experiences over months to years, participants’ desire to engage in intercourse and other sexual activities waned. Also, other sexual problems were common. Women reported sexual arousal problems, and almost all of them used lubricants for vaginal dryness. Due to pain, intercourse/sex became primarily associated with discomfort, disappointment, and distress, not only for the women themselves, but also for their partners. Participant 14, a 56-year-old woman, stated: “One loses all desire when it hurts. Yeah, it makes you a bit grouchy, really.” Women felt that their (and their partners) sexual needs could not be longer met. The women’s sexual needs were predominantly expressed as a desire for J Sex Med 2015;12:2462–2473

2468 sexual intimacy with their partner. Intercourse was considered the closest intimate act, both mentally and physically. Participant 9, a 56-year old woman, explained what intercourse meant for her: “That you love one another. That you are simply one, instead of two different individuals you simply are one. And that then, that you get such a kick out of this togetherness.” Thus, women felt ultimate emotional closeness with their partner when engaging in intercourse. Participant 11, a 52-year old woman, stated: “It [coitus] also brings me a lot of intimacy and pleasure, satisfaction . . . being engaged with each other. That’s what gives me pleasure. Yes, and the satisfaction that I meant something for [name of spouse/partner] in that way too.” Seeing the partner enjoying intercourse was emotionally rewarding for the women. In general, women missed the intimacy with their partner when intercourse was no longer possible, even if the couple engaged in other sexual activities. With respect to women’s capacity to reach an orgasm via penile–vaginal penetration, almost 50% of the women had been able to reach an orgasm in this way before the onset of LS.1Participant 3, a 58-year-old woman, stated: “I gave him a lot of pleasure, but I also gave myself a lot of pleasure. And then of course you can say, yes, by clitoral stimulation you come and . . . but it is . . . And sometimes I used that too when he was inside me. Because that made it extra special, really. That was the icing on the cake.” Due to pain during intercourse and diminished arousal, it became harder or impossible to reach an orgasm via penetration. Some of them kept engaging in intercourse in the hope to regain sexual enjoyment and orgasm through penetration, as they used to do. Participant 17, a 60-year old woman, stated: “Actually, I think my own need also played a major part in it, to just come. And that indeed I could discard the pain that resulted from it just to have intercourse.” Most women found it less important to reach an orgasm via penetration for the sake of their own pleasure. They could also physically enjoy having intercourse without reaching an orgasm or found an orgasm reached by oral or manual stimulation (without penetration) also pleasurable. Participant 16, a 60-year old woman stated: “And then, when we continue, it is my husband who enjoys it most when we finish with intercourse. I 1 Nine women (47.4%) clearly stated to be able to experience an orgasm during penile–vaginal penetration, five women (26.3%) clearly stated that they never had been able to experience an orgasm in this way, and of five other women (26.3%) we do not know whether or not they could reach an orgasm via penetration.

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Brauer et al. like both . . . then [during intercourse] I can reach orgasm too, so that makes it . . . I really enjoy manual stimulation, I like it while using a vibrator as well, so it’s just a matter of how it goes.” Thus, for women, the act of intercourse was especially emotionally rewarding, and for a considerable number of them, it was also sexually rewarding. So, all women hoped that the vulvar surgery would enable them to experience sexual intimacy with the partner again, and a number of them mentioned the desire to regain sexual enjoyment and the ability to orgasm during penetration for themselves. Some women expressed their wish to be able to have sex/intercourse again more in terms of hoping that intercourse would become “naturally, spontaneously and easy” than enjoyable and pleasurable. For instance, Participant 10, a 64-year-old woman, who had been able to experience orgasm through penetration, answered to the question of why she wanted surgery: “That it can happen spontaneously, with no itch or pain anywhere. Just normal. That you don’t need to think ‘Careful, because it might hurt’.”

Other Reasons for Wanting to Undergo Surgery Although all women decided on surgery in order to be able to have intercourse again, another frequently mentioned reason for surgery was to reduce LS-related complaints of itch and chronic vulvar irritation, burning, and pain (apart from dyspareunia). However, patient education prior to surgery did not include the purpose of symptom reduction in daily life. Nevertheless, some women even indicated that symptom reduction was their most important reason for surgery, as a 64-yearold women (Participant 2) said: “Well, for me it was the pain and misery because of what was there. That it would [go away] . . . because there also was a small ulcer. That had to go anyway. And that caused that terrible pain and itch. So for me that was the most important. (. . .) I mean . . . I didn’t sleep anymore, yes, it was really bad. Very brutal, it has been a very unpleasant period. (. . .) As long as I could get rid of that pain and itch, and, well, that on top of that I could also have sex again, in my mind that was terrific.” Women had been very concerned about any future progress of LS. Participant 17, a 60-year-old woman, stated: “It was said that, because of the adhesions, it could be possible that at some point it would block the urethra. And what are the consequences of that, and, well, then maybe you are . . . or you suffer from urine loss every other minute, or frequent bladder infections, or worse. (. . .) It may even result in vulvar cancer.” Therefore, some women also went for surgery to slow down

Motives for Vulvar Surgery of Women with Lichen Sclerosus the progression of the disease, by cutting away affected vulvar tissue. For example, Participant 13, a 45-year-old woman, conveyed: “If you don’t do anything, it can mutilate you as well. I tried to visualize that . . . it spreads.”

Discussion

This qualitative study sought to investigate what motives underlie LS patients’ explicit wish to regain the ability to have sexual intercourse by means of vulvar surgery. Thematic analysis showed that these women’s request for vulvar surgery in order to resume intercourse was founded on three major motivational factors: 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. Besides the wish to re-experience intercourse, another reason for surgery was to reduce LS symptoms in daily life. Because the women experienced sexual pain or were unable to engage in penile–vaginal penetration due to LS, they felt “inadequate” as a woman and as a sexual partner. This concept of being an inadequate woman and sexual partner represents traditional scripts of heterosexuality and gender roles [25,26]. That is, whereas men are positioned as having a driven need for sex, women are expected to take responsibility for maintaining harmonious relationships, implying that they should be sexually receptive and able to sexually satisfy the male partner [27,28]. As a consequence, the women with LS felt responsible for accommodating their partners’ sexual needs and maintaining his sexual satisfaction. A substantial proportion of the women prioritized their partners’ sexual pleasure above their own needs and pleasure. Furthermore, Western culture conceptualizes penis-in-vagina penetration as “real” heterosexual sex [29–31]. Other sexual activities are regarded as an introduction to intercourse, as “foreplay,” pointing to the central position of coitus [27]. It appeared hard for our patients and their partners to make changes in their sex life that would better fit the women’s vulvar conditions. In this light, these women’s request for surgery can be seen as a means to restore their identity as what they consider to be a normal woman and sexual partner. There is a striking resemblance between women with LS and women with other (somatically unexplained) sexual pain conditions, such as (un)provoked vestibulodynia, dyspareunia, and vaginismus in what it means for

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women to live with sexual pain within the context of a heterosexual relationship [25,26,32–35]. Interestingly in this respect is a recent study among heterosexual, lesbian, and bisexual women with sexual pain problems, showing that more heterosexual women reported a negative impact of pain on their sexual relationship than lesbians and bisexuals [36]. The authors argued that women in a relationship with a male partner rely much upon the “coital imperative” of penile–vaginal intercourse [37], whereas for women in same-sex relationships, there are no sexual scripts that necessitate vaginal penetration, and therefore, neither woman may feel required to endure sexual pain for the partner. The authors further argued that sexual scripts in same-sex relationships can easily be modified to reduce the level of pain a woman experiences, without compromising pleasure. So, we conclude that women’s distress about having a sexual pain condition in a heterosexual relationship is aggravated by their perceived inability to have “normal sex” with a male partner [25,32,33,38]. Women’s feelings of inadequacy and fears of infidelity or abandonment by their partner are remarkable in the light of women’s reports that their partner was supportive and did not exert pressure to have intercourse. Rather, it was often the partner who wanted to stop with painful intercourse (attempts) because he did not to want to hurt her. Despite his support, women apparently did not feel secure without this ability to engage in intercourse. The fear that the partner would not tolerate abstaining from coitus at one point in time weighed heavily upon them. Perhaps, the women were inaccurate in their perception of their partner’s need for intercourse, such that they exaggerated the importance of intercourse for their partner, whereas the partner was willing to accept a sexual relationship without coitus [25]. Alternatively, it is also possible that partners were ambivalent or inconsistent in their attitude and reactions toward intercourse. Some partners were perceived as less supportive and understanding with respect to sexual pain before the diagnosis of LS had been established. As such, women may still have felt pressured, either implicitly or explicitly, by their partner to engage in intercourse. Cumulative research points to an important role of partner reactions in the experience of and coping with sexual problems in women with sexual pain conditions [39–45]. These findings underscore the relevant role of interpersonal factors in the experience of sexual pain. J Sex Med 2015;12:2462–2473

2470 Another major theme was the desire to regain the experience of (sexual) intimacy and physical enjoyment by means of vulvar surgery. Models on women’s sexual response [46] posit that women, especially those in longer term relationships, may not engage in sexual activity for motives related to physical enjoyment, but consider sexual activity as a means to strive for emotional intimacy. The rewards of emotional closeness (e.g., increased commitment, bonding) together with an appreciation of the subsequent well-being of the partner all serve as the motivational factors for sexual activity with the partner [47]. In the present study, the women used to experience ultimate intimacy when engaging in intercourse, but intimacy became disrupted when sexual pain arose due to LS. Many couples had difficulty with experiencing intimacy by other forms of sexual activity, because noncoital activities did not count as “real sex” and were perceived as a reminder of their inability to satisfy their partner by means of coitus. This model on women’s sexual response further assumes that, although women are motivated to be sexual by the expectation of increased intimacy rather than by a strong biological force, physical enjoyment through sexual stimulation is necessary to allow this motivation to continue in the long term. According to incentive motivation models, a sexual experience involving orgasm can be understood as ultimately rewarding [47–50]. Given that a remarkably high number of almost 50% of women in the present study were able to orgasm during intercourse, these women wished that the vulvar surgery would enable them to re-experience sexual pleasure and orgasm via penetration. Surprisingly, the present study shows that many women with LS had hoped that vulvar surgery would result in a reduction of LS-related complaints of itch and chronic vulvar irritation, burning, and pain (apart from dyspareunia). In patient education prior to vulvar surgery in women with LS, women are explained that such surgery is aimed at the relief of sexual complaints. The education does not refer to symptom reduction in daily life such as itching as a likely outcome of surgery. In a separate paper, the outcomes of vulvar surgery on both sexuality and daily life complaints will be addressed [51]. This study was the first to investigate motives behind vulvar surgery in female patients with LS. Its strength lies in the personally tailored, experience-focused and interactive interview J Sex Med 2015;12:2462–2473

Brauer et al. format. Interviews of this kind enabled us to interactively explore the patient’s emotions, reflections, and reasons for having vulvar surgery, and, as such, provided a more contextualized and detailed understanding of these women’s motives. Quantitative research would have limited the possibility to uncover the complex interplay between intra and interpersonal motives and societal views on traditional gender roles and sexuality. One of the limitations of the study is that its retrospective design may have induced recall bias. Women spoke about their motives for surgery postoperatively, and after a relatively long period of time (maximally 5 years had passed between the surgery and the interview). Another limitation is that our findings are based on a selective study sample. That is, the interviewees were LS patients, who experienced dyspareunia or the inability to have sexual intercourse due to anatomical or epithelial changes, and who had vulvar surgery to find relief for these sexual problems. The study sample was homogeneous in terms of demographic variables and sexual experience. Almost all women were involved in longlasting relationships, and for 63% of them, their current partner was also their first sexual partner with whom they had had sexual intercourse. The number of sexual partners is remarkably low in comparison to women in the same age categories in the normal population [52]. In addition, the sexual repertoire of the women and their partners was restricted, in the sense that it mainly consisted of intercourse. However, since the motives for wanting to engage in intercourse in our population are consistent with those reported in female populations with somatically unexplained sexual pain complaints (provoked vestibulodynia, dyspareunia), the present data contribute to confidence in transferability [53]. That being said, it would be worthwhile to investigate to what extent the present themes identified would emerge in a population of patients with LS, who are equal in terms of LS severity and marital status, but who do not opt for surgery after being informed about that option. What are the motives of those women for not undergoing surgery? What position and importance take sexual intercourse in those women’s (sexual) relationships? Our findings indicate that women’s motives for (regaining the possibility to have) intercourse are often partner related. It is important to realize that the present study reports exclusively on women’s perceptions of her partner’s attitudes and reactions toward her inability to engage in (pain free) inter-

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Motives for Vulvar Surgery of Women with Lichen Sclerosus course, his sexual needs, and sexual preferences. Adopting a dyadic approach in future research in which the voices and experiences of both the women and their partners are represented, is necessary to gain a deeper understanding of the multiple intra and interindividual factors that influence the sexual experiences and sexual behavior of couples of whom the woman has been diagnosed with LS. This research line would fit with recent studies on sexual pain conditions [39–43,45]. Finally, another relevant research endeavor would be to investigate the efficacy of vulvar surgery. In addition, future studies focusing on who benefits most from vulvar surgery would help to improve treatment decisions and treatment outcome. The present study indicates that behind women’s explicit wish to restore intercourse by means of a reconstructive surgery lies a constellation of both intra and interindividual motives. With respect to clinical implications, these findings highlight the need of a thorough couplebased sexual history pre-operatively. It should be explored how this woman/partner/couple experiences the inability to engage in intercourse, why it is so important for her/him/them to regain this ability, and what they hope surgery can do for their postoperative sex life? Since our findings showed that women’s motives to restore coitus were often partner-centered, this might imply that a woman’s request for surgery may be based on her own ideas, interpretations, norms, and fears about what it means for her partner to not to have coitus, without having those ideas verified by the partner. Therefore, in a couple-based sexual history, open communication between the woman and her partner should be stimulated. Another purpose of a sexual history is to provide education about sexuality and to discuss unrealistic expectations from surgery for postoperative sexuality. In conclusion, a thorough couple-based sexual history in women with LS who request vulvar surgery is indispensable for a well-considered treatment decision and for preventing patient dissatisfaction. Corresponding Author: Marieke Brauer, PhD, Department of Sexology and Psychosomatic Obstetrics and Gynecology, Academic Medical Center, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands. Tel: (+31) 20-566-4556; Fax: (+31) 20-696-3489; E-mail: [email protected] Conflict of Interest: The author(s) report no conflicts of interest.

Statement of Authorship

Category 1 (a) Conception and Design Marieke Brauer; Matthé Burger; Ellen Laan; Rik van Lunsen (b) Acquisition of Data Marieke Brauer (c) Analysis and Interpretation of Data Marieke Brauer; Matthé Burger; Ellen Laan; Rik van Lunsen

Category 2 (a) Drafting the Article Marieke Brauer; Matthé Burger; Ellen Laan; Rik van Lunsen (b) Revising It for Intellectual Content Marieke Brauer; Matthé Burger; Ellen Laan; Rik van Lunsen

Category 3 (a) Final Approval of the Completed Article Marieke Brauer; Matthé Burger; Ellen Laan; Rik van Lunsen

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2472 12 Spano L, Lamont JA. Dyspareunia: A symptom of female sexual dysfunction. Can Nurse 1975;8:22–5. 13 Van Lunsen HW, Ramakers M. The hyperactive pelvic floor syndrome (HPFS): Psychosomatic and psycho-sexual aspects of hyperactive pelvic floor disorders with comorbidity of urogynecological, gastrointestial and sexual symptomatology. Acta Endoscopica 2002;32:275–85. 14 Burger MPM. Lichen sclerosus en seks. [Lichen Sclerosus and sexuality]. NTOG 2011;124:325–31. 15 Murphy R. Lichen sclerosus. Dermatol Clin 2010;28:707–15. 16 McPherson T, Cooper S. Vulval lichen sclerosus and lichen planus. Dermatol Ther 2010;23:529–32. 17 Woodruff JD, Genadry R, Poliakoff S. Treatment of dyspareunia and vaginal outlet distortions by perineoplasty. Obstet Gynecol 1981;57:750–4. 18 Paniel B-J. Surgical procedures in benign vulval disease. In: Ridley CM, Neill SM, eds. The vulva. 2nd edition. Oxford: Blackwell Science; 1999:277–91. 19 Hite S. The Hite report. New York: Dell; 1976. 20 Lloyd EA. The case of the female orgasm: Bias in the science of evolution. Cambridge: Harvard University Press; 2005. 21 van Lunsen RHW, Brauer M, Laan E. Sex, pleasure and dyspareunia in liberal Northern Europe. In: Hall K, Graham C, eds. The cultural context of sexual pleasure and problems: Psychotherapy with diverse clients. New York: Routledge; 2013:335–70. 22 QSR International Pty. Ltd. NVivo (Version 10) [Computer software]. Melbourne, Australia. 2006. 23 Hruschka DJ, Schwartz D, Cobb St. John D, Picone-Decaro E, Jenkins RA, Carey JW. Reliability in coding open-ended data: Lessons learned from HIV behavioral research. Field Methods 2004;16:307–31. 24 Boeije H. Analysis in qualitative research. London: Sage; 2010. 25 Ayling K, Ussher JM. “If Sex Hurts, Am I Still a Woman?” The subjective experience of vulvodynia in hetero-sexual women. Arch Sex Behav 2008;37:294–304. 26 Kaler A. Unreal women: Sex, gender, identity and the lived experience of vulvar pain. Fem Rev 2006;82:50–75. 27 Horvath M, Brown J. Between a rock and a hard place. Psychologist 2010;23:556–9. 28 Stoppard JM. Understanding depression: Feminist social constructionist approaches. London: Routledge; 2000. 29 Gavey N, McPhillips K, Braun V. Interruptus coitus: Heterosexuals accounting for intercourse. Sexualities 1999;2:35– 68. 30 Myerson M, Crawley SL, Anstey EH, Kessler J, Okopny C. Who’s zoomin’ who? A feminist, queer content analysis of “interdisciplinary” human sexuality textbooks. Hypatia 2007; 22:92–113. 31 Opperman E, Braun V, Clarke V, Rogers C. “It Feels So Good It Almost Hurts”: Young adults’ experiences of orgasm and sexual pleasure. J Sex Res 2014;51:503–15. 32 Elmerstig E, Wijma B, Berterö RNT. Why do young women continue to have sexual intercourse despite pain? J Adolesc Health 2008;43:357–63. 33 Elmerstig E, Wijma B, Swahnberg K. Prioritizing the partner’s enjoyment: A population-based study on young Swedish women with experience of pain during vaginal intercourse. J Psychosom Obstet Gynaecol 2013;34:82–90. 34 Hinchliff S, Gott M, Wylie K. A qualitative study of heterosexual women’s attempts to renegotiate sexual relationships in the context of severe sexual problems. Arch Sex Behav 2012;41:1253–61. 35 Svedhem C, Eckert G, Wijma B. Living with genito-pelvic pain/penetration disorder in a heterosexual relationship: An interpretative phenomenological analysis of interviews with eight women. Sex Relat Ther 2013;28:336–49.

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Appendix A

Topic List • Onset and development of LS: timeline between occurrence of first LS-related symptoms, arrival at the diagnosis, up to present; main symptoms, factors that aggravate or alleviate symptoms; strategies to alleviate symptoms. • Sexual life: sexual (dys)functioning, satisfaction and pleasure, sexual repertoire, quality of sexual relationship before and after the arrival at the diagnosis, and after the surgery up to present.

Motives for Vulvar Surgery of Women with Lichen Sclerosus • Importance of and motives for having sex in general and vaginal penetration in particular. Differentiation between importance of and motives for sex for the woman herself, her partner, the (sexual) relationship. • Motives for surgery: reasons, expectations, scenario what if the woman would not have been engaged in a sexual

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relationship, scenario what if surgery would not have been possible. • Satisfaction with surgery in terms of symptom reduction, sexual (dys)functioning including dyspareunia, quality of sex life (pleasure, sexual relationship, sexual repertoire). • Experiences with health-care professionals with respect to LS.

J Sex Med 2015;12:2462–2473

Motives for Vulvar Surgery of Women with Lichen Sclerosus.

Women with lichen sclerosus (LS) may experience (superficial) dyspareunia or the inability to have vaginal intercourse due to painful fissures and nar...
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