Women's Sexual Function and Dysfunction. Irwin Goldstein MD

Difficult cases: treatment of sexual pain disorders

Sophie Bergeron, Caroline F Pukall, Yitzchak M Binik

Why sexual pain disorders are inherently difficult to treat

Many health professionals do not enjoy treating women suffering from sexual pain disorders (i.e., dyspareunia and vaginismus) and find it difficult to deal with patients afflicted by these conditions. Why is this? First, the presence of a recurrent pain tends to elicit feelings of powerlessness in the health professional, which are due, on the one hand, to the chronic nature of this symptom, and, on the other hand, to the strong emotions generated by the experience of pain in the patients. Second, dyspareunia and vaginismus tend to have a negative impact on the entire sexual response cycle, generating other sexual dysfunctions that also require treatment and that strain the overall relationship of the couple. An additional deterrent for physicians is that in comparison with other sexual dysfunctions, little is known about the etiology or treatment of sexual pain.Finally, there is great diagnostic confusion surrounding dyspa- reunia and vaginismus, since they are difficult to differentiate from one another.2 More specifically, the distinctness of the two disorders from the point of view of treatment is not clear. Research, to date, indicates a more pronounced phobic component in women with vaginismus.3 However, in view of the lack of definitive data pertaining to the treatment of vaginismus, this chapter will mainly focus on dyspareunia, with mention of vaginismus when relevant.

Chronic recurrent pain

Since intercourse is an activity associated with intense pleasure, the presence of pain is all the more in contrast with one’s expectations. This experience is bound to elicit intense reactions in both members of the affected couple in their attempt to make sense of a condition that often takes years to diagnose.Therefore, treating health professionals must deal not only with a difficult physical symptom - pain - for which there is no quick fix, but also sometimes with the feelings of hopelessness, despair, and anguish expressed by their patients.

Comorbid sexual dysfunctions

The pain affects all phases of sexual function (see Chapters 6.1-6.5, and 12.1-12.5 of this book). For example, women with dyspareunia and vaginismus have been shown to have less sexual desire and arousal, a lower frequency of intercourse, and less orgasmic capacity both during intercourse and manual stimulation than controls.5-8 Clinically, the majority of these patients meet the diagnostic criteria of the Diagnostic and Statistical Manual of Mental Disorders, fourth edition,9 for both inhibited sexual desire and sexual arousal disorder, and often for secondary anorgasmia as well. Inhibited sexual desire is generally viewed as one of the most difficult sexual dysfunctions to treat;10 combined with chronic, recurrent pain during sex, sexual desire is unlikely to be any easier to restore. In dealing with cases of sexual pain, health professionals may have to treat the entire spectrum of female sexual dysfunction, with each new impairment adding to the burden of the previous one.

Lack of efficacious treatments

There is a paucity of adequate health-care services for women suffering from sexual pain, with at least two studies showing that many women with dyspareunia receive less than optimal relief from their pain.11,12 One recent study found that approximately 60% of women suffering from vulvar pain complaints sought treatment for their pain, but 30% had to consult three or more physicians in order to obtain a diagnosis, and the condition remained undiagnosed in 40% of the women who had consulted.12

Since research interest in this area began to increase only in the early 1980s, many important clinical questions remain unanswered. Thus, current therapeutic options are largely based on trial and error, with few empirical outcome data to rely on to devise appropriate treatment plans. Empirically validated treatments are urgently needed: there are no randomized clinical trials for vaginismus, and only a few for dyspareunia.4,13-15 Moreover, the results of these trials show that dyspareunia is difficult to treat: apart from vestibulectomy for vulvar vestibulitis syndrome - which has high success rates but involves more risk - medical interventions are not successful; behavioral interventions are generally successful in about 40% of patients. Although not confirmed by any controlled study, reported success rates in the treatment of vaginismus are high;16 however, many clinicians find this condition just as difficult to treat as dyspareunia, perhaps because of the important avoidance component which renders adherence to any kind of intervention problematic, leading to high dropout rates. Unfortunately, for health professionals involved in the treatment of dyspareunia and/or vaginismus, the choice of interventions is largely driven by one’s background and training, or by the patients’ preferences, with multidisciplinary efforts still being the exception rather than the rule.

Diagnostic confusion

Two recent studies have demonstrated that the only factor differentiating women with dyspareunia from those with vaginismus is the avoidance of penetration by the latter.8,17 In addition, these disorders overlap with what could be referred to as the vulvodynia spectrum, or idiopathic vulvar pain conditions. Such diagnostic confusion represents yet another factor contributing to the treatment challenges presented by the sexual pain disorders, as it inevitably leads to confusion among health professionals working together in an attempt to treat these patients - a confusion that is picked up by the women themselves and contributes to their distress.

As is the rule in this textbook, patients’ right to privacy and confidentiality must be protected. Therefore, the material has been disguised and altered to protect privacy, while simultaneously maintaining the essential clinical problem. Interventions are unaltered and described by the authors.

The following case vignette describes a difficult sexual pain case and the challenges it presents for the physician. Karen, aged 26, has suffered from pain during intercourse for the last 3 years. She was referred by her general practitioner to a gynecologist because it was felt that he could be of more help to her. At the time of the first appointment with the gynecologist, Karen had consulted four physicians in her town and had been told by different clinicians that the problem was in her head, that a glass of wine would do the trick, and that there was nothing wrong with her physically. The fourth physician she consulted knew about sexual pain; he told her that she had vulvar vestibulitis combined with vaginismus and prescribed a corticosteroid cream. When Karen reported 3 months later that the cream had not helped, he referred her to a gynecologist. When she arrived at her first appointment, the gynecologist was confronted with an emotional patient who suffered not only from painful sex but also from an absence of sexual desire and a romantic relationship that was falling apart. The gynecologist listened to Karen’s story and, after explaining to her that he had no miracle cure to offer, suggested that an anesthetic gel might help to reduce her pain during intercourse and offered to see her every 3 months. Appointments involved providing support and encouragement to Karen while attempting to find the right medical treatment for her. Although she was discouraged by the lack of success of the various interventions, Karen did appear to appreciate the close medical follow-up. The gynecologist suggested she might want to join a sexual pain support group, which she did. Meanwhile, they tried three different creams over a 1-year period, including an estrogen cream, a stronger anesthetic cream, and cromolyn cream. After a few helpful sessions of physical therapy to reduce her muscle tension, Karen opted for a vestibulectomy. She still experiences some discomfort from time to time, but, overall, is quite happy with the outcome of her surgery.

The combination of (1) a complex and multisymptom clinical picture where all phases of sexual function are impaired and relationship adjustment is compromised, (2) a lack of appropriate and validated treatments, and (3) diagnostic confusion leads to patients being frustrated and skeptical of what health professionals have to offer. In addition, these factors may sometimes lead to health professionals avoiding difficult sexual pain treatment cases.

Predictors of treatment outcome

Although we have suggested that most sexual pain cases are difficult to treat, many factors can contribute to the varying degrees of complexity. In particular, the degree of pain intensity has been shown to influence treatment outcome only modestly. More interestingly, key psychosocial factors that affect not only pain but also other dimensions of outcome (e.g., sexual function) have now been identified. Other factors that may play a role in adding to the burden of sexual pain include whether the pain is provoked or unprovoked, the time of onset of the disorder (lifelong or acquired), past sexual trauma, and the presence of complicating medical and psychologic problems. All of the above predictors of treatment outcome have been studied in dyspareunia populations. To our knowledge, no predictors of outcome for vaginismus have been reported.

Pain intensity and related psychosocial factors

We tend to assume that women who are suffering from more intense pain will present additional challenges for the health professional. This assumption is supported by empirical findings which show that the higher the pretreatment pain intensity, the worse the therapeutic outcome for both surgical18 and psychosocial interventions for chronic pain.19 Although pain intensity should be taken into account when assessing the difficulty of a case, the psychosocial factors that influence it may be even more important. We have recently found that psychologic variables, such as high degrees of pain catastrophizing (negative self-talk or rumination about pain) and low levels of self-efficacy (one’s sense of mastery over the pain), explained 44% of the variance in pain intensity in women with vulvar vestibulitis syndrome - the main cause of dyspareunia in premenopausal women (Desrochers et al.20). Interestingly, the relationship between catastrophizing and pain was mediated by anxiety, suggesting that the more women with sexual pain tend to catastro- phize, the more anxious they become, and this, in turn, has a negative impact on their experience of pain. Other studies have shown that increased anxiety is significantly related to increased pain in women with dyspareunia, whereas high relationship adjustment is related to decreased pain.21,22 Similarly, high pain catastrophizing and low self-efficacy have been found to be reliable predictors of negative outcomes in cognitive-behavioral pain management and biofeedback,23,24 as well as in surgical interventions for chronic pain.

Finally, Meana et al.,22 in a sample of 100 women with dys- pareunia, found that those who attributed their pain to psychosocial factors (i.e., internal attributions) tended to report higher psychologic and dyadic distress, as well as higher levels of pain and sexual dysfunction, than women who attributed their pain to physical factors (i.e., external attributions). These results indicate the importance of health professionals’ conceptualizations of sexual pain, indicating that when they send the message that the pain is in the woman’s head, they may inadvertently be causing iatrogenic harm. In summary, psychosocial factors appear to play an important role in modulating pain intensity and should be taken into account when assessing the degree of difficulty of a sexual pain case.

Despite the fact that elevated pain intensity is associated with a more complex clinical presentation, an increasing number of studies suggest that pain and related disability may be distinct and partially independent phenomena.25 Our own work shows that there is a significant correlation (r = 0.30) between pain during intercourse and sexual function, as is the case for the association between pain and disability in other chronic pain populations.25 Nonetheless, current studies in the area of sexual pain are beginning to show that other factors are more important than pain intensity in determining the degree of sexual dysfunction experienced by patients. For example, we have found that after controlling for pain intensity, low levels of self-efficacy explained 24% of the variance in sexual dysfunction in women with vulvar vestibulitis syndrome, whereas relationship adjustment explained 28% of the variance (Desrochers et al.20; Jodoin et al.26). Along the same lines, a 2.5- year follow-up of women with vulvar vestibulitis who took part in a randomized treatment outcome study has shown that factors such as conservative sexual attitudes and low confidence in the efficacy of the treatment received explained a larger proportion of the variance in negative outcome than pretreatment degree of pain, although higher pretreatment pain intensity was modestly predictive of a worse outcome.27 These findings represent another line of evidence supporting the important role of psychosocial factors in the expression of sexual pain and in determining the relative difficulty of a given case.

Provoked versus unprovoked pain

Both clinical reports and empirical data demonstrate that women with unprovoked or chronic pain show higher levels of psychologic distress and respond less favorably to certain therapeutic approaches than those with provoked or recurrent pain. More specifically, women suffering from essential vulvodynia (i.e., unprovoked vulvar dysesthesia) report greater interference with their sexual function and more hypochondriasis, anxiety, and somatization than women suffering from other vulvar dis- orders.28 However, these results may stem in part from the idiopathic nature of vulvodynia compared with the better- circumscribed vulvar disorders with which it was compared in this study. As for treatment, one study has shown that women with essential vulvodynia respond less favorably to a surgical approach than women with vulvar vestibulitis, thereby concluding that surgery should be proscribed for this group of patients.29

Lifelong versus acquired

It is also thought that a lifelong history of sexual pain may not result in as positive an outcome as an acquired problem, where episodes of painless sex have been experienced. This is intuitively appealing, as it might be harder for a woman to diminish her pain and penetration anxiety if she has never known intercourse without such pain. At least one study has shown that women suffering from vulvar vestibulitis and undergoing surgical intervention do not benefit as much from the procedure if they have had the condition since their first intercourse attempt.29 Unfortunately, there are very few data to support the assumption that lifelong cases are more difficult to treat. Specifically, the number of years since the onset of the problem is not a predictor of treatment outcome for cognitive-behavioral therapy, biofeedback, or vestibulectomy in women with vulvar vestibulitis.27

Past sexual trauma

Recent empirical findings suggest that women with idiopathic vulvar pain - an important source of dyspareunia and vaginismus - are exposed to factors that influence their risk of developing genital pain well before menarche, as in early-childhood victimization.30 Clinically, it is often found that cases where the woman presented a history of sexual trauma were somewhat more difficult to treat due to the additional time and work involved in processing the traumatic event. Although sexual trauma has not been investigated as a predictor of outcome in the treatment of the sexual pain disorders, studies focusing on psychosocial interventions for pain have found that a history of sexual abuse is a significant predictor of poorer outcome.19 Interestingly, results from a recent study suggest that women diagnosed with vaginismus report significantly more sexual abuse than women with vulvar vestibulitis.8

Other medical and psychologic problems

Complicating medical problems include chronic dermatologic conditions leading to painful intercourse, such as lichen sclerosus and lichen planus, as well as vulvar fissures. Many of these conditions can be managed with topical ointments, such as strong corticosteroids, although they can never be cured. Thus, the therapeutic goal becomes one of helping the woman and her partner adjust to sex given a chronic genital condition, focusing on education regarding the impact of this condition on sexual function.

Certain psychologic problems, mainly personality disorders, clinical depression, or an anxiety disorder, can further complicate the clinical picture and modify the health professional’s therapeutic goals and expectations. Studies on the predictors of surgical outcome in pain populations suggest not only that psychologic factors are the best predictors of outcome, but also that hypochondriasis and anxiety in particular are related to worse surgical outcomes, as is the presence of severe relationship distress.18 In terms of psychologic predictors of treatment outcome for psychosocial pain treatment programs, somatization, depression, and anxiety have all been shown to be associated with poorer outcomes.19 In the case of sexual pain disorders, lifelong vaginismus in particular is characterized by a strong phobic element associated with a significant avoidance of any form of attempt at vaginal penetration,3 which tends to make the resolution of the pain problem more complicated. The following case vignette illustrates the difficulties involved in treating a case of lifelong vaginismus where the woman presented with other psychologic problems, and the couple struggled with issues such as poor communication, lack of trust, and ambivalence about having children.

A couple in their thirties were referred to a sex and couple therapy clinic by the woman’s gynecologist for “fear of sex”. Laurie and Tony had been married for 9 years, and had dated for 6 years prior to their marriage. They had no children and both came from a religious background. Tony worked in a family business, and Laurie was not working at the time of the assessment. She suffered from an anxiety disorder and had taken a sick leave from work in an attempt to reduce stress in her life.

Laurie was diagnosed with lifelong and generalized vaginismus. Neither Laurie nor Tony had had much sexual experience before they started dating. Laurie had never explored her body or masturbated, and had never experienced orgasm. She seemed uncomfortable discussing most aspects of sexuality, and lacked even the basic vocabulary to express sexual concepts.

It also became gradually obvious to the therapist that the couple did not communicate well, and that there remained trust issues from problems unrelated to the vaginismus. When confronted with this observation, they maintained that their communication was fine, and that they were not interested in working on it, even if it might help them work on the sexual problem. Laurie and Tony, very impatient for penetration to happen, decided to aim for penetration for the sake of conception. They wanted to conceive since they were now in their mid-thirties and “time was running out”. They were also under much pressure from the family, who could not understand what was taking them so long to start a family. However, it became apparent that Laurie was ambivalent about having children and that this was impeding progress in therapy. Laurie made excuses as to why the therapy homework exercises were not done; she started canceling sessions and talking about issues other than the sexual problem. Treatment ended with Laurie having completed her first gynecologic examination but not having achieved vaginal penetration with her husband.

In summary, difficult cases can be conceptualized as ones in which there are multiple problem areas in addition to the sexual pain, rendering a resolution less likely both in the eyes of the patient and in those of the treating health professional(s). Psychosocial factors in particular, such as high catastrophizing, low self-efficacy, internal attributions, poor relationship adjustment, and past sexual trauma, appear to be important determinants of pain and related sexual function. In addition, confidence in the efficacy of treatment is a significant predictor of outcome for dyspareunia, highlighting the importance of how we approach what we consider to be difficult cases and the types of expectations that we foster in these patients.

Strategies for treating difficult cases

Considering the diagnostic confusion that prevails in the area of sexual pain, one of the first steps to facilitate the treatment of a difficult case is to conduct a careful evaluation in order to determine the appropriate diagnosis, and to devise an adequate treatment plan. This is ideally done in a multidisciplinary fashion, with a gynecologist or dermatologist establishing a medical diagnosis, and psychologists/sexologists and/or physical therapists assessing the cognitive, affective, behavioral and muscular dimensions of the condition.31 A thorough description of the evaluative procedure is beyond the scope of this chapter.

Probably the single most important treatment strategy for dealing with difficult cases is the adoption of a multimodal perspective, independent of one’s training background.32 This model is currently the reference standard in the treatment of other pain problems and has proven successful in reducing pain and disability.33 The advantages of working within such a conceptual framework are multiple; it is probably the only model that provides the ability to address the varied problem areas typically presented by difficult sexual pain cases. The multimodal approach also holds the potential to accelerate patient recovery, as it targets multiple symptoms simultaneously, early in the treatment process, symptoms such as pain and sexual function, which tend to be interdependent. Therefore, a change in one problem area usually brings about a change in another problem area, fostering patient hope and satisfaction with treatment. Initial therapeutic gains are also facilitated by patients having access to all relevant health professionals from the very beginning, an advantage that is not provided by the referral model, in which patients must wait many months between visits to different health professionals. Those currently using a multimodal approach for the treatment of dyspareunia resulting from vulvar vestibulitis have reported that, in addition to its being quite successful, it has the benefit of saving a large proportion of these women from surgical intervention.34 However, no randomized treatment outcome study to date has compared a multimodal approach to a unimodal one in the treatment of sexual pain.

Adopting a multimodal, multidisciplinary model for patient care is associated with specific theoretic and clinical ramifications (see Chapter 17.6). First, in line with current conceptualizations of chronic and recurrent pain problems, this model emphasizes the interdependent roles of biologic, cognitive, affective, behavioral, and interpersonal factors that contribute to the development and maintenance of sexual pain,35 suggesting that multiple etiologic pathways may lead to similar symptom presentations.1

Second, from a clinical point of view, a multimodal approach is based on the acknowledgment that no single discipline has all the answers and that one will not be able to manage a difficult case successfully without the close collaboration of trusted colleagues from other health-care professions. Thus, adopting a multimodal perspective necessarily involves working as a multidisciplinary team, albeit sometimes a virtual one. This is often the case in North America, since the organization of health services does not facilitate the application of this model of care. Nonetheless, a good way to apply this model is when a central team member is responsible for organizing and planning patient care, treatment decisions (in conjunction with the patient), and referrals to other health professionals.

The elaboration of goals constitutes a crucial step in instilling hope and stimulating faith in the proposed treatment, particularly short-term ones. Some types of goals tend to foster further disappointments while others strengthen the patient-health professional alliance and promote self-efficacy. In an attempt to create healthy, realistic expectations, it is preferable to avoid making the complete elimination of pain an absolute goal, but rather to provide detailed information concerning the multiple life areas that may improve after treatment, such as sexual function and relationship satisfaction. Additionally, it is helpful not to make the increase in frequency of sexual activities or intercourse a goal per se; that would only further stigmatize and alienate the woman suffering from a complicated case of sexual pain.31 A useful alternative lies in having the partner participate in the treatment program - including all medical visits - and helping the couple regain enjoyment in nonpenetrative sexual activities. The following case vignette illustrates the use of a multimodal perspective in the treatment of a difficult case of dyspareunia involving other medical, psychologic, and relationship problems, but without a central team member coordinating patient care.

Lisa, aged 35, was referred to a sex and couple therapy clinic by her general practitioner, whom she had consulted for anxiety and depression following the development of dyspareunia and chronic vulvar pain. At the time of the assessment, she was taking antidepressants to manage her psychologic difficulties. Lisa had been married for 5 years and stated that she was unhappy and unfulfilled in her marriage. She reported never particularly enjoying sex and never having much sexual desire - even prior to the onset of the dyspareunia. She and her husband engaged in sexual activities without vaginal penetration about three to four times a year. Since the onset of her dyspareunia, she had no desire for sex and he had stopped initiating after her repeated refusals. Other issues present in the clinical picture included a profound dissatisfaction with her work, and strong dependency needs vis-à-vis her husband, coupled with resentment toward him for controlling most aspects of their marriage. The husband chose not to be a part of the therapy.

The goals that were established with Lisa were to (1) reduce her pain and its impact on her life, (2) increase her assertiveness with her husband, (3) break the avoidance pattern that they had developed surrounding the sexual pain problem by communicating about it, and (4) decrease her anxiety and depression. It was agreed that Lisa would continue seeing her general practitioner and gynecologist to facilitate the management of her psychologic symptoms and medical condition. However, there was no communication between the psychologist and the two physicians. Lisa had also tried physical therapy in the past, but felt she had not benefited from it. She had never done the recommended exercises and experienced some degree of guilt over what she qualified as an unsuccessful outcome.

It was difficult at first to establish a therapeutic alliance with Lisa, as she was generally skeptical of how a psychologist could help her alleviate her pain and improve her overall sexual and relationship satisfaction. Initial work focused on helping her reconceptualize her pain problem as a multidimensional one over which she had some degree of control, via a pain diary in which she noted what factors appeared to affect her pain and the distress it provoked. She was also taught breathing exercises and cognitive restructuring to learn to manage her pain. Despite initial efforts to work on the avoidance pattern and sexual dysfunction, this avenue appeared to lead nowhere. However, some improvements were noted, such as a reduction in Lisa’s chronic vulvar pain and professional dissatisfaction.

Efforts were made to understand and confront Lisa’s ambivalence about getting better and her inconsistent commitment to therapy. These efforts contributed to clarify what factors were holding her back and to address these in a more direct fashion. Shortly thereafter, Lisa began being more assertive with her husband regarding her needs in the relationship, to which he responded positively. Lisa broached the topic of sexual pain with him and realized that he was in fact feeling quite hurt and rejected by her lack of interest in sex. They then began to make changes in their sex life, with Lisa asserting her sexual needs, and this led to more satisfying sex and increased desire and arousal. Soon thereafter, Lisa’s sexual desire developed significantly, and she and her husband began to engage in sexual activities once a week. Although intercourse was still painful, the couple had begun discussing having children. Lisa decided to start her physical therapy treatments again. The sex therapy work then focused on keeping her motivated to do the exercises and building a graded dilation hierarchy in collaboration with the physical therapist. The treatment ended prematurely due to the pregnancy leave of the therapist, but Lisa continued seeing her physical therapist, her general practitioner, and her gynecologist.

The following case is an example of how a well-coordinated, multimodal approach led by a gynecologist can maintain patient hope and treatment adherence despite an arduous process to recovery.

Julie, now 25, developed dyspareunia after a series of repeated yeast infections during her early twenties, which were alternately treated with prescription antifungal creams, over-the-counter ones without confirmation of a diagnosis, and an oral antifungal agent - none helped her pain. After these unsuccessful treatment attempts, Julie consulted a gynecologist, who specialized in the treatment of dyspareunia and vulvodynia. After a careful evaluation, he explained that the treatment of her problem might take many months and involve more than one health professional, since she had had the pain for a number of years, had tense cir- cumvaginal muscles, and did not presently engage in intercourse out of fear of pain and lack of desire. After recommending medical visits at 3-month intervals and prescribing an anesthetic gel, he referred Julie to a sex therapist, with whom treatment focused on increasing her desire and arousal and reducing her fear of pain. Her comfort with sexuality and her romantic relationship improved, but her dyspareunia was only slightly alleviated. After discussing Julie’s progress with the sex therapist and with the patient herself, the gynecologist referred her to a physical therapist, who worked on reducing the tension in her pelvic floor. Based on the biofeedback monitor and on the gynecologist’s observations, Julie’s muscles appeared less tense, but the patient was still rarely engaging in intercourse, since her pain was still present. Finally, the gynecologist suggested that he perform a vestibulectomy, which was successful in reducing her pain. However, Julie remained fearful of intercourse and went back to the sex therapist, upon recommendation of her physician, to increase her comfort with vaginal penetration. Julie now enjoys pain-free intercourse and is grateful to her gynecologist, who recently delivered her first baby.

Why work with difficult sexual pain cases?

The very issues that make sexual pain disorders so challenging are also the ones that make them one of the most interesting women’s sexual dysfunctions to treat: the complexity of the clinical picture and the interrelation of the many etiologic factors involved, and the impact on several important areas of life all contribute to our interest in treating difficult sexual pain dis- orders.31 More importantly, the high prevalence of sexual pain disorders, combined with the paucity of adequate treatments for this women’s sexual health problem, makes this work all the more meaningful and valuable.

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