Paul Enzlin1, 2 , Hilde Toelen2 and Kristel Mulders2
(1)
Institute for Family and Sexuality Studies (Department of Neurosciences KU Leuven), Leuven, Belgium
(2)
Centre for Clinical Sexology and Sex Therapy (UPC KU Leuven), Leuven, Belgium
Paul Enzlin
Email: Paul.Enzlin@upckuleuven.be
25.1 Introduction
This chapter focuses on couple-based interventions for sexual rehabilitation in the context of cancer.
· This couple focus is in line with the idea that cancer is in fact a “relationship disease” – reflecting the idea that (when in a heterosexual or homosexual relationship) a patient never has cancer alone, i.e., his/her partner will also be (e.g., emotionally, practically, financially, sexually) affected by the cancer.
· This couple focus is also in line with the idea that sexuality is a “relationship” issue – not in a normative sense, but – reflecting the fact that sexuality is meaningful behavior for each partner apart and for the relationship as a whole. This view on sexuality is rooted in the general systemic idea that one’s (sexual) behavior has an impact on the (sexual) behavior of the other, and vice versa, and that (sexual) behavior gains its meaning in the context of a (intimate) relationship. This view on sexuality implies that sexual problems will also have an impact on the patient, on the partner, and on the relationship, and that in sexual rehabilitation, in the context of cancer, “the couple” should be regarded as “the patient.” Moreover, as it has been established that couple-focused interventions can be effective in, e.g., reducing psychological distress and facilitating communication between partners, so can a couple-based approach also be helpful in reestablishing the sexual relationship [1].
25.2 Cancer, Couples, and Sexuality
A cancer diagnosis can probably be characterized as a “biopsychosocial disaster” for the patient and his/her partner. While this is probably true for all patients, some couples report that the cancer diagnosis leads to an intensification of their partner relationship. In that intensification, they get closer to each other, they are able to ignore “redundant” frustrations, and succeed to focus on priorities and on what they (still) have. In many couples, however, partners differ in how they cope with the threats and emotions (e.g., anxiety, feelings of disappointment, grief) imposed by the cancer diagnosis. Such a difference in coping may burden the relationship and lead to an emotional distance between partners, resulting in, e.g., anxiety about losing each other, physical distance – literally: no touching – between partners.
Moreover, cancer often provokes sexual concerns. It is known that various types of cancer and various types of treatment may have different impacts on the aspects of sexuality – including:
· Sexual functioning (e.g., erectile dysfunction, genitopelvic pain/penetration disorder, problems with lubrication)
· Sexual experience (e.g., sexuality provoking feelings of grief or sadness instead of pleasure, sexual activity stopping as a consequence of patients feeling themselves undesired or unattractive due to, e.g., scars)
· Fertility (e.g., infertility due to chemotherapy)
· Importance of sex (e.g., sex may lose its importance when one can no longer perform due to, e.g., dyspareunia or erectile dysfunction; sex may become more relative in light of cancer-induced existential anxiety)
· The meaning of sex (e.g., feeling healthy, feeling a (wo)man, source of comforting and soothing)
· Sexual satisfaction [2]
Meanwhile, it is well known that after cancer (treatment), sexual functioning, sexual experience, and sexual satisfaction are not merely the consequences of the physical damage to the body due to the cancer (e.g., penile cancer, breast cancer) and the short- and long-term consequences of its treatment(s) (e.g., chemically induced menopause), but that the association between cancer and sexual functioning/sexual experience is complex [3]. Sexual satisfaction after cancer is indeed also related to psychological adjustment of both partners, but especially to the quality of the relationship, including (sexual) difficulties that were present already before the cancer diagnosis [4]. Therefore, it is important for health professionals to rule out whether the sexual problem of a couple is a sexual problem per se – that needs sex-focused therapeutic attention – or a symptom of another (old or new) underlying (personal or relational) problem – that needs a broader individual or relationship psychotherapeutic focus. The association between partner relationship and sexual satisfaction is also complex, but it is suggested that people with higher relationship satisfaction also report a higher level of sexual satisfaction [5].
25.3 Cancer Survivors, Partners, and Sexuality: Renegotiating and Restarting
After the initial (emotional) crisis instigated at first by the diagnosis and then by the continued coping during the process of cancer treatment, emotional and physical intimacy – as a source of comfort and soothing – may initially be(come) more important than sexuality itself [6]. Nevertheless, at a certain moment, in most couples – for some, early during treatment, and for others much later – sexuality regains its importance. However, reestablishing a new sexual balance, with new routine and new habits, is for most couples a serious challenge.
The basis of searching new ways consists of two elements:
1. (a)
2. (b)
If a couple needs help with their search for sexual renewal, couple’s sexual rehabilitation should start with the health professional trying to join and align with the couple and discuss the mandate to open up this dialog about the couple’s perspective on their (active or inactive) sexual future and what they want. Apart from correct information about what is still possible, clarifying the dynamics of the couple can be helpful in opening that dialog. Such dialog may unravel the reactions, understanding, demands, or patience of both partners. Besides, it may reduce the distress about sexuality in the couple and help to cope with the changes in sexual functioning, sexual experience, and all the adaptations needed in the sexual domain [7]. But, it may also reveal that the interaction between partners may also increase the distress about sexuality. Typically, a vicious circle of avoidance is seen. For the patient, the avoidance of the partner to talk about sexuality or to initiate sexual contact is often seen as proof that the partner does not find him/her attractive any more. For the partner, the lack of initiative of the patient is seen as proof that sex is no more priority or too burdensome. Together, this can cause for both of them withdrawal from physical contact. Similarly, based on the perception – or experience – that every physical contact or touching between partners should always lead to sexual activity including intercourse, all other forms of expression of affection can diminish and even disappear from the partner relationship – including sexual intercourse itself [2]. Such interactive processes may result in increasing (physical and emotional) distance between two – loving – partners.
A next step is clarifying that disclosing one’s feelings and needs is a necessary starting point to (re)create a new sexual repertoire. How emotionally risky that may seem, personal disclosure is the basis for both (reinstalling) intimacy and sexual renegotiation. Successful sexual renegotiation is based on good and open couple communication and the ability to search for, and willingness to experiment with, alternative – e.g., nonintercourse-based – sexual practices. However, many couples are unable to (re)negotiate sexuality due to factors such as fear of creating feelings of guilt in the patient (e.g., feeling less a woman/man if you cannot give your partner what (s)he wants) [2]; feelings of guilt in the partner (e.g., based on the idea that initiating sex or being sexually demanding is not compatible with a caring role); dominant discourses of masculinity, femininity, and sexuality (e.g., the coital imperative). The observation that many couples are unable to renegotiate sexuality is in contrast to the data that suggest that the sooner the couples resume sexual activity after the cancer treatment, the fewer problems they will experience [4]. Thus, it seems that couples with difficulties to renegotiate sexuality may profit from extra support.
25.4 Cancer Survivors, Partners, and Sexuality: What Could We Do?
The idea of couple sexual rehabilitation also implies that both partners are included in the sessions from the beginning and that health professionals should start with trying to get to know:
1. (a)
2. (b)
3. (c)
4. (d)
5. (e)
After investing in learning to know the couple’s relationship, their sexual history, and expectations for the future, the health professional could start with psycho-education about couples, cancer, and sex. In psycho-education, areas that can be covered include, e.g.:
1. (a)
2. (b)
3. (c)
4. (d)
Psycho-education may be helpful in reducing anxiety, in creating a sense of control, in improving communication between partners, and in increasing overall psychological well-being, relational and sexual satisfaction of both partners. Thus, health professionals can play a key role by offering this kind of information in psycho-education and help couples come to terms with their (confusing) feelings and cope with their uncertainties, worries, and problems about the impact of cancer on sexuality.
However, psycho-education will often not be enough for couples to be able to adjust to the relationship and/or sexual difficulties that popped up after the cancer diagnosis. Couples may need more specific help to start sexual renegotiation. An interesting framework that can be used in couple sexual rehabilitation to help couples with sexual renegotiation is the “Balance method” as developed by Gianotten [8]. This method is based on the assumption that sexual function is the total sum of inhibitory and stimulating factors that may influence several aspects of sexuality, such as responsiveness to sexual stimuli, sexual desire, sexual arousal, and orgasm. In this model, balance does not refer to “to be in balance,” but refers to the total weight of the inhibitory and the total weight of the stimulating factors. If the total weight of stimulating factors is heavier than that of the inhibitory factors, this will result in sexual functioning, and vice versa: more inhibitory factors will not lead to sexual functioning. Gianotten [8] describes four phases in his model. In the first phase, a thorough sexual history-taking is done, including making an inventory of inhibitory factors, thereby making a difference between unchangeable inhibitory factors (e.g., physical damage, personality characteristics, education, and the culture one is born in) and changeable inhibitory factors (e.g., performance anxiety, unrealistic expectancies, negative cognitions about sexuality). Couples are informed that there is no use in keeping to try to change the unchangeable factors and/or to try to restore the old situation. In the second phase, couples are helped to get insight in their situation by discussing the balance model, starting with a graphical presentation of the inhibitory factors. A list of inhibitory factors is made as long as possible, thereby taking into account the perspective, i.e., thoughts, worries, and anxieties, of both partners. Then, the list is discussed with the couple that is asked to confirm whether this list is a correct representation of their situation. Consequently, the couple is challenged by the questions: “Whether they believe that the situation is changeable?” and “Whether they would like to change this or not?” An important advantage of this approach is that the couple can see that there are several causes at stake, and thus not only one, i.e., the cancer and all its consequences, and that there is more than one changeable cause which could help both partners to see more possibilities to change. After this, a discussion of the stimulating factors is introduced in which the couple is challenged to think about the possibilities to increase or promote these stimulating factors. It is thereby important to stress that stimulating factors may refer to all senses and kinds of sensuality, i.e., seeing, smelling, hearing, tasting, feeling (e.g., vibration), and that it is also important to take into account environmental factors and the broader (relationship) atmosphere (e.g., giving compliments to your partner, confirmation), apart from (realistic) expectations and fantasy that may also be stimulating. In discussing stimulating factors, health professionals should be sensitive about the timing to propose specific options or aids and try to find a balance between being explicit about what they propose while taking into account the possibilities of the couple (e.g., discussing vibrator use should be done in an open, suggestive, and – not imposing – way as this may not be part of or fit into the sexual repertoire of a couple). Health professionals should be attentive to also discuss: (1) the myth that sex should be spontaneous, as this might be in contrast to the need to plan sexual activity and make some preparations before being able to have sex (e.g., in case of a stoma as a consequence of colon cancer); (2) that restarting sexual activity is a shared responsibility for both partners; especially when couples stopped having sex for a long time, they often have problems to restart again, and this implies that discussing stimulating factors can also be threatening for both partners and should be done sensitively. When attempts to increase the stimulating factors as a way to increase pleasure and arousal were not completely successful, in a third phase, the possibility of a symptomatic treatment (e.g., vacuum device, ICI, PDE-5 inhibitors, lubricant) of sexual dysfunction is being proposed including a discussion of the pros and cons of using these. Gianotten (2008) believes that symptomatic treatment is but a second-order choice after attempts to empower the couple to find their own solution, to prevent that couples get dependent on medication or aids in their sexual expression. In the last phase – when symptomatic treatment is not helpful, or in these cases where patients and partners cannot accept these as “fitting” solutions – the meaning of sexuality in the past and the future is discussed. This means that the couple should be enabled to mourn about the lost abilities and be invited to adjust their ideas and ideals about sexuality and put forward other goals or other ways of (mutual) stimulation or satisfaction, in such way that it is in line with their (real) possibilities and own and shared expectations [8].
In certain cases, all the above-mentioned might not be enough, which means that couples should be referred to a mental health professional with extensive specialty training for an intensive couple- or sex therapy based approach of sexual rehabilitation.
Conclusion
This chapter described the distressing character of relationship and sexual side effects of cancer for patient and partner, and showed that cancer may induce feelings of isolation, distress, and (sexual) inadequacy in both partners and may result in emotional distance and a loss of sexual intimacy between partners. While communication about sexuality is known to improve managing the changes in the sexual relationship after cancer, many couples seem to have difficulties to foster this kind of communication. Furthermore, the idea of couple sexual rehabilitation as a holistic approach to sexual rehabilitation is introduced. In such a holistic approach, topics that should be covered are: (a) relational intimacy (e.g., self-disclosure, partner-disclosure, emotional connection, shared values and dreams); (b) physical affection (e.g., handholding, hugging, physical touch, kissing, cuddling); (c) nonpenetrative sexuality (e.g., sexual massage, genital caressing, mutual masturbation, deep kissing, oral sex, sex toys); and (d) penetrative sexuality (e.g., in cases with ED possibly supported by PDE5inhibitors, ICI; in cases with vaginal atrophy possibly supported by a lubricant). Covering all these topics is doing justice to the complexity of sexuality in (heterosexual as well as homosexual) couples and hopefully is helpful for couples to see and develop more possibilities, to find ways to accept sexual losses, to develop new sexual paradigms, and to restart (a new kind of satisfying) sexuality.
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