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Abstract

People with Parkinson’s disease (PD) present with problematic sexual behaviors that are often misunderstood or ignored. Sexual problems in PD are part of a non-motor syndrome, and they play a prominent role in the life of affected individuals and their partners. Based on our considerable clinical experience, we describe four common types of sexual preoccupation behaviors in people with PD: (1) sexual behavior with underlying sexual dysfunction, (2) sexual desire discrepancy with partner after restored desire, (3) hypersexuality and compulsive sexual behavior, and (4) sexual behavior with underlying restless genital syndrome. We also suggest methods of assessing and diagnosing these sexual behaviors, and propose alternative possible treatments for people with PD and their partners/caregivers. Understanding these four behavioral types will assist healthcare professionals in explaining and educating people with PD and their partners, contribute to decreased stress and tension between them, and help them manage these sexual issues.

Keywords

Parkinson’s disease sexual dysfunction sexual preoccupation behavior hypersexuality compulsive sexualbehavior restless genital syndrome persistent genital arousal disorder desire

INTRODUCTION

Sexual dysfunction (SD) is one of the non-motor manifestations of Parkinson’s disease (PD) [1]. It may be directly or indirectly affected by the disease and comorbid illnesses, by medications and other treatments, by the general consequences of a chronic illness (fatigue, weakness, impaired mobility, concentration problems) and by psychosocial problems (depression, anxiety, reduced self-esteem and body image, role changes and difficulties in relationships) [2 –4]. Men and women with PD report experiencing sexual dissatisfaction [5 –7], and they rank SD as the 12th out of 24 most bothersome PD-related symptoms [8]. Earlier studies have reported two main aspects of sexual problems in people with PD: impaired sexual function (e.g., reduced desire, erectile dysfunction or orgasmic difficulties), and heightened sexual preoccupation (e.g., compulsive sexual behavior or hypersexuality) [4 , 9–12]. Impaired sexual function is more widely recognized and studied. This manuscript will focus on excessive sexuality which is less known.

Our movement disorder clinics has offered sex therapy to people with PD as an integral part of the multidisciplinary treatment approach for many years. Based on our considerable and varied clinical experience, we now describe four common sexual preoccupation behaviors (SPBs) that can be expected to challenge healthcare professionals who work with people with PD. The unique characteristic of these SPBs is that they sometimes present as increased sexual desire and sometimes as obsessive interest in sex. Their underlying etiologies, however, are altogether different. We defined four SPBs as follows: (1) sexual behavior with underlying SD, (2) sexual desire discrepancy (SDD) with the partner after restored sexual desire, (3) hypersexuality (HS) and compulsive sexual behavior (CSB) as part of impulse control disorders (ICDs), and (4) sexual behavior with underlying restless genital syndrome (ReGS). Differentiating between these four SPBs and understanding their dynamics and etiologies may be helpful in the management of problematic sexual behaviors in PD, in adjusting the pharmacological and non-pharmacological therapeutic approaches, and in providing the necessary support to the affected individuals and their partners. We also present a flowchart for the assessment and management of SPBs based on our clinical experience (Fig. 1).

SEXUAL PREOCCUPATION BEHAVIORS IN PARKINSON’S DISEASE

Sexual behavior with underlying sexual dysfunction

The SD may be a feature of the general PD presentation (due to motor or non-motor symptoms), associated with medications (e.g., antidepressants) or related to another accompanying illness (e.g., cardiovascular disease, diabetes mellitus, etc.). SPBs associated with problems in sexual functioning have been already described by Bronner and Hassin-Baer in reference to several causes of failure to successfully achieve sexual intercourse [13]. These include erectile dysfunction and premature ejaculation in men and orgasmic difficulties in both men and women, which result in sexual dissatisfaction reported by two-thirds of men and one-third of women who were interviewed in the setting of Movement Disorders Clinics [7 , 12]. Inability to achieve successful sexual intercourse may be frustrating and distressing to people with PD who may persist in attempting to have intercourse until they reach a successful and satisfying experience. If orgasm is not achieved, they may obsessively discuss sex with their partner, their physician or other healthcare professionals, and may also persistently search for professional and non-professional treatments. Although the intensive and focused preoccupation in sex may be misinterpreted as hypersexual behavior, it is not HS/CSB, but rather an ineffective way of coping with their SD.

The first step in an intervention (Fig. 1) is sex education and providing information in order to explain to the people with PD and their partners what is actually happening. For the treatment of the specific SD, they can be referred to specialists, such as physicians (urologist, family physician or neurologist) and sex therapists. Improvement of sexual function should lead to reduction of the person’s SPB. Sex therapists can offer further explanations, advice and specific tips which may be helpful to people with PD, such as: (1) planning different positions when erectile problems are caused by a change of movement in the course of sexual activity; (2) scheduling intercourse when the individuals are at their best (“on” medication state); (3) using oil or body lotions on the partner’s skin to improve foreplay and create a smooth and pleasant touch in cases of rigidity and tremor; (4) waiting longer (2-3 hours) than the usual recommended one hour before attempting intercourse when using phosphodiesterase type 5 inhibitors (PDE5-I) to treat erectile dysfunction [13]; (5) practicing a “medication vacation” for 24–48 hours prior to sexual activity when orgasmic difficulties are associated with the use of selective serotonin reuptake inhibitor (SSRI) antidepressant medications [13, 14].

Should sex therapists not be available, we suggest that a member of the healthcare team discuss the problem with the person with PD either alone or with the partner. Explanations and tips can also be supplied by written information. These couples reportedly welcome the opportunity to discuss sexual concerns and noted that written information provided a framework for initiating discussion between them [15].

Sexual desire discrepancy with partner after restored desire

Heightened interest in sexual activities was reported by 8.8% of 193 people with PD who were being treated with dopaminergic medications [10]. Those in the initial phase of PD, i.e., before and soon after diagnosis, may experience a lowered sexual interest, and sexual problems were reported in people with PD who were still drug-naïve [16]. Studies of young people with PD found changes in sexual activity, decreased libido and sexual dissatisfaction after PD onset and after the initiation of antiparkinsonian therapy with dopaminergic agents [17, 18].

Restored desire is usually welcomed by males with PD, who describe themselves as “being alive again” and “resuming their masculinity”, even if some experience SD. Based on our clinical experience, their partners frequently report that they experience a paradoxical decrease in their sexual interest. This may be related to the findings in a study of burden among 59 caregivers of people with PD which found that providing care may trigger depression in the caregiver [19], and depression is well known to increase the risk of SD, particularly in the form of a reduction in desire [20]. SDD may also be a result of such depression.

Willoughby and Vitas [21] used the term “individual SDD” to describe the difference between an individual’s desire for sexual frequency and the actual sexual frequency in the relationship. A study of 1,054 married couples found that high individual SDD for either partner was generally associated with less satisfaction, less stability, less positive communication and more couple conflict [22]. The results that emerged from that study suggested that the presence or absence of an SDD is an important element of a couple’s sexuality and overall relationship. It may have significance consequences for people with PD if their partners are the basis of their support systems.

Unfortunately, restored desire in PD is confusing and may be interpreted by partners as well as by healthcare professionals as SPB or as a manifestation of HS/CSB. Therefore, the heightened desire and SDD should be carefully evaluated, preferably by interviewing both partners separately and together [4].

The management of problems created by restored desire and SDD is very complicated. It should start with sex education that includes explanations of the dynamics of the situation to both the person with PD and the partner. Open communication with them both may reduce the intensity of the problem and the related frustration and tension. It would not be prudent to adjust the dopaminergic treatment, since doing so may deleteriously affect the functional well-being of the person with PD, and alternative approaches should be considered. Special attention should be given to the partner’s worries andburden.

When explanations and/or written material to both the people with PD and their spouses are not sufficient, and the former continue harassing their spouses or other persons, referral to sex therapists, couple therapists or psychologists should be offered. The psychological approaches that include cognitive behavioral therapy in the context of multidisciplinary management can potentially decrease emotional distress. Given the relationship between the presence of distress and the lowering of a person’s self-control [23], it is essential to reduce stress in an attempt to prevent a greater risk for problematic behaviors. Finally, there is sometimes a need to refer persons with PD to a psychiatrist and/or consider medication adjustment of dopamine replacement therapy (DRT).

Hypersexuality and compulsive sexual behavior

The frequency of HS among people with PD ranges from 1.7 to 3.5% [24 –26]. HS is one the behavioral features of persons with HS and it includes preoccupation with sexual thoughts, promiscuity, constant demands for sex, habitual use of telephone sex lines, internet pornography, sex chats or contact with sex workers. Rare aberrant sexual behaviors, such as obsessive masturbation, exhibitionism, voyeurism, fetishism, sadomasochism, pedophilia, zoophilia, and frotteurism have also been reported [27, 28].

HS may have a devastating effect on partners and family members of people with PD, contributing considerable stress within a family that is already dealing with the difficult consequences of PD [13]. Sexual health issues should be taken into account in hypersexual individuals, including sexually transmitted diseases (e.g., HIV/AIDS), unplanned pregnancies and legal consequences (e.g., lawsuit for sexual harassment or abuse) [11]. Therefore, it is imperative to detect and treat HS as early as possible.

HS may be associated with a recent increment of antiparkinsonian medications (especially dopamine agonists), dopamine dysregulation syndrome, history of drug and alcohol abuse, concomitant psychiatric problems, and concomitant impulse control disorder (e.g., gambling, shopping and eating). Interestingly, the clinical profile of patients with HS was found to be significantly different from people with PD who were not hypersexual, with the former presenting low levels of agreeableness and being more open to new risk-taking experiences [29]. Specifically, low levels of agreeableness have been correlated with an increased likelihood of sexually risky behaviors, infidelity and sexual promiscuity [30, 31]. HS can be assessed by the Parkinson’s Disease-Sexual Addiction Screening Test (PD-SAST), a valid and comprehensive screening instrument consisting of five questions for HS in people with PD [32, 33].

The treatment of HS requires the involvement of an interdisciplinary team. It is important to explain to the person with PD and his/her partner that HS is a chemical disorder linked to the effects of neurotransmitters and not to behavioral or personality changes caused by disease. As such, the neurologist may consider medication adjustments, e.g., reduction or discontinuation of dopamine agonists, use of advanced methods of dopaminergic stimulation, such as deep brain stimulation (DBS), or enteral infusion of Levodopa/Carbidopa gel (LCIG). Some studies found that DBS indirectly improves impulse control disorders, including HS, because of the marked reductions in dopaminergic medications that follow successful stimulation treatment [34]. New impulse control behaviors may occur after subthalamic DBS, but they are transient in most cases [35]. In an open-label study, all types of ICDs, including HS, improved considerably after LCIG, with nearly complete symptom resolution in all patients [36]. A prospective observational study found that 30% of ICDs resolved with LCIG treatment [37]. It is essential to deal with the prevention of risky sexual behaviors [4]. Education and support of persons with PD, their partners, caregivers and family members should be offered by a member of a multidisciplinary team who is comfortable in dealing with these sensitive issues.

Sexual behavior with underlying restless genital syndrome

ReGS, also known as persistent genital arousal disorder, is a rarely reported and often neglected sexual problem described mainly in women and one that is not specific to PD [38]. ReGS was first defined by Leiblum and Nathan as spontaneous, intrusive, and unwanted genital arousal, felt as pulsating engorgement and discomfort in the genital area, in the absence of sexual desire or stimulation [39]. It is associated with spontaneous orgasms, with feelings that orgasm is imminent or feelings that orgasmic release is needed to reduce discomfort in the genital area, although these sensations are not relieved by achieving orgasm. The proposed etiologies of ReGS are manifold and may involve a range of psychologic, pharmacologic, neurologic, and vascular origins [40]. One possible cause is either the use of or the discontinuation of serotonergic antidepressant medications, and ReGS may persist long after SSRI discontinuation [38]. ReGS seems to be a combination of genital complaints together with an overactive bladder and/or restless legs syndrome [38, 41]. It has been suggested that ReGS is mediated by fibers of the dorsal nerve of the clitoris and the pudendal nerve, which are not sufficiently inhibited [38, 41].

There are two cases of ReGS in women with PD in the literature, one a 65-year-old Canadian and the other a 62-year-old Japanese [42, 43]. Both women complained of severe and disabling symptoms in the genital region, including persistent discomfort, burning sensations, tingling and pain. These abnormal genital sensations occurred without sexual desire. Symptoms in both women exacerbated during rest at night, often triggered by sitting or lying down, and improved by walking. Physical examination failed to reveal any gynecological abnormalities. The first woman was treated with a low dose of a dopamine agonist and she reported improvement. The second woman received clonazepam and pramipexole which improved the uncomfortable genital sensation. While ReGS is rare, some researchers have suggested that it should be included in the differential diagnosis of genital symptoms and restlessness, and recommended treatment with a dopamine agonist [42, 43]. In addition, those authors assumed that ReGS and restless leg syndrome shared common characteristics, and they suggested that there was a similar underlying mechanism in people with PD [42, 43].

The clinical manifestation of ReGS may be mistakenly considered as HS, but these two SPBs are totally different. People with ReGS may try to alleviate the discomfort by rubbing the genital area or finding relief by reaching orgasm. However, unlike HS, ReGS has usually no link to sexual desire. The motivation for the frequent masturbation or sexual activity, is the desire to be relieved of genital pain and discomfort. In addition, while HS may be alleviated by discontinuation of dopaminergic medications, the discomfort and pain of ReGS may be attenuated by dopaminergic treatment.

There is no evidence-based treatment for ReGS [44], although it has been suggested that treatment with dopamine agonists can be beneficial [42]. Successful treatment requires a multidisciplinary approach and consideration of all possible causes, such as psychologic, pharmacologic, neurologic, and vascular. Pelvic floor physiotherapy should also be considered. Waldinger et al. [44] reported complete disappearance of restlessness in the genital area as well as overactive bladder complaints within two months of treatment with transcutaneous electrical nerve stimulation in two non-parkinsonian women with ReGS. Cognitive therapy, mindfulness meditation and stress reduction techniques may be helpful, and couple and sex therapy, including communication and explanation, may also contribute to better outcomes. This SPB needs to be further investigated, and publication of additional cases will enable better definition, diagnosis and understanding of the mechanisms involved.

DISCUSSION

This paper aimed to clarify SPBs in PD and to propose practical approaches to these problematic behaviors. Four types of SPB are described (Table 1), and a flowchart for assessment and treatment of SPBs is presented (Fig. 1). The Parkinson’s Disease-Sexual Addiction Screening Test (PD-SAST) is a tool used to differentiate between HS and the three other SPBs [32]. It was found to be a valid and comprehensive screening instrument for HS and therefore chosen to serve as the first step in the assessment of SPBs [33]. Interestingly, partners and caregivers may perceive the behavior as more severe and disturbing than the affected persons themselves [45]. Therefore, we recommend that the PD-SAST questionnaire be administered to both the people with PD and their partners/caregivers.

The discrepancy in perception of these behaviors between the people with PD and their partners should be clarified in the educational part of the intervention, especially the physiological source of the problem. Providing a safe place to discuss SPB individually or with partners may enable better understanding of the behavior [46]. Written information is also appreciated by all those involved [15].

This paper has some limitations. This is not an evidence-based study with validated classifications and definitions. Although the content is based exclusively on clinical experience, the extent of our clinical experience is considerable. The sex therapist plays an integral part in our movement disorders multidisciplinary teams, and her experience is based on 25 years of assessment and treatment of over 500 persons with PD and/or their partners, as well as more than 100 individuals with other neurological conditions. In addition, the sex therapist is involved in the educational and networking activity with sex therapists and healthcare professionals all over the world since 1997. Since the suggestions for management of SPBs are based on clinical experience, they should be employed with caution by novices.

Many centers around the world do not have sex therapy as an integral part of the multidisciplinary treatment of people with PD. The proposed assessment and treatment flowchart may be used by neurologists and other healthcare providers to address some of the problematic SPBs. The healthcare team can also use two helpful interventions in sex therapy and sexual medicine: (1) conducting personal, couple or group discussions which increase knowledge and reduce tension and uncertainty, and (2) providing written material with explanations and tips. Persons with PD may be referred to PD organizations (e.g., EPDA, PDF, NPF) who have considerable information and tips about sexuality available in their websites [47 –49].

In summary, our understanding of SPBs in PD is based mainly on our own clinical experience, and evidenced-based scientific knowledge is still insufficient. We hope that the proposed flowchart will serve as a base for didactic and uniform investigation of SPB cases. Practitioners are encouraged to investigate and share their cases of sexual manifestations and their treatment experience for better understanding of these perplexing and challenging clinical situations. Such a collective effort might enable the formulation of the diagnostic criteria, better classification and terminology, and evidence-based guidelines for therapeutic management.

CONFLICT OF INTEREST

The authors have no conflict of interest to report.

Author contributions:

All authors were involved in the conception, design and drafting of the article, as well as revising the intellectual content.

Footnotes

ACKNOWLEDGMENTS

No sources to report.

We thank Ms. Esther Eshkol for superb English editing of this manuscript, and we thank Mrs. Susan Calne, a dear friend and a pioneer in PD nursing, for the inspiration and support.

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Sexual Preoccupation Behavior in Parkinson’s Disease

Abstract

Keywords

INTRODUCTION

SEXUAL PREOCCUPATION BEHAVIORS IN PARKINSON’S DISEASE

Sexual behavior with underlying sexual dysfunction

Sexual desire discrepancy with partner after restored desire

Hypersexuality and compulsive sexual behavior

Sexual behavior with underlying restless genital syndrome

DISCUSSION

CONFLICT OF INTEREST

Author contributions:

Footnotes

ACKNOWLEDGMENTS

References