Sexuality, intimacy and gynecological cancer W.C.M. WEIJMAR SCHULTZ1 AND H.B.M. VAN DE WIEL2 1Department of Obstetrics and Gynaecology and 2Department of Medical Psychology, University Hospital Groningen, The Netherlands ABSTRACT On a psychological level, not all changes in sexual functioning after gynaecological cancer treatment automatically lead to sexual problems or dysfuncti­ons. Whether sexual dissatisfaction occurs will also depend on personal factors, social factors and the context in which these (negative) changes occur. Introduction Sexuality, intimacy and cancer. At first glance, perhaps a rather unusual combination. Many people associate sexuality and intimacy with pleasure and relaxation, whereas cancer evokes quite the opposite type of feelings - particularly an abundance of negative feelings such as rejecting physical contact, fear of damaging something, fear of becoming contaminated, not being able to have children, feelings of guilt, anticipated mourning and the fear that the disease will recur. Whether or not changes on a sexual level - brought about by the disease - are experienced as problems and become problems in the relationship, depends to a very large extent on the way in which the problems are dealt with: burying one's head in the sand and just waiting to see what happens or tackling the problem together, despite all the snags. This applies to just about everyone, doctors included. Experience has shown that resuming sexual activities after cancer is not an easy task. Sexuality is after all an outstanding example of an activity which takes place spontaneously, but this will not always be the case after confrontation with cancer. This is where the heart of the problem lies. If things no longer speak for themselves, then someone will have to speak for them - and that is difficult. Suddenly words will have to be found to discuss and express wishes, desires, options and impossibilities. Why is sexuality important? Actually, this question can be split into two: Why is sexuality important for everyone? And why is it particularly important during periods of physical distress? In general, it can be said that sexuality is so important because it makes such a major contribution to the quality of life. This means that sexuality is not so much a biological need - you can live to be one hundred without it - but more of a social need. Above all, sexual contact means social contact. The fact is, we need contact with other people and part of that contact also consists of intimacy or sexual contact. Sexuality is also important because we live in a society in which it is usual for people to be judged largely on the basis of physical and sexual attractiveness. Apart from these more general reasons, there is also a more specific reason why intimate contact is so important during illness. A major factor which contributes to the recovery process after illness is the experience of support from others, particularly from the partner. If problems arise in the partner relationship, for example problems to do with sex, then this may seriously disrupt the support process - and with it - the recovery process. In this way, the partner becomes part of the problem. Sexual interaction becomes a stress-inducing element instead of a stress-reducing element. From this point of view, sexual interaction can be considered to be a form of support and deserves - if only for this reason - all our attention. Conclusion: sex is important, also for people with cancer! What induces sexual dysfunctioning after gynaecological cancer treatment? Sexual problems are nearly always caused by a complex combination of physical problems, psychological problems and social problems. In many cases, treatment will lead to irreparable physical damage and this may affect sexual functioning. Treatment strategies for gynecological cancer typically consist of radical surgery such as radical hysterectomy and total abdominal hysterectomy, pelvic irradiation with or without vaginal irradiation, chemotherapy in case of ovarian cancer and for those with recurrent disease or extensive cervical disease at diagnosis pelvic exenteration or radical vulvectomy. Physical effects of the treatment of gynecological cancer on sexual functioning can be loss of uterine sensations, vaginal shortening, dyspareunia, loss of sensitivity, atrophic vaginitis, loss of sexual desire and stenosis of the vagina . It will be clear that disease extent and magnitude of treatment are major physical determinants of risk. However, gynecological cancer treatment affects more than just the physical integrity of a woman. Psychological disorders can have a strong negative influence on sexuality, especially in terms of experiencing sex. Specific sexual factors are only partly involved. A far more important role is played by the degree to which the coping process as a whole is progressing. Broadly speaking, this concerns emotional disturbances, other priorities, pain, general malaise, fatigue or apathy, loss of self-confidence and disruption of sexual identity. On a social level changes occur in the relational framework of sexuality. The most important consequences are role changes, changes in the meaning of sex, balance of power and problems in communication about sex. Frequently it is hardly possible to distin­guish between the physical/ psychological and social sources of sexual dysfunction. Therefore, cauti­on is required in attributing a psychogenic cause to one disorder, and exclude others. Literature Once entered the area of the consequences of genital cancer treatment it's time to take a closer look at the results of inventory studies. Unfortunately this is not very easy because the literature shows a remarkable dichotomy. Case-reports and retrospective studies show that genital cancers and their treatment frequently have a deleterious effect on sexual functioning. Loss of sexual motivation, sexual capacities, sexual behaviour and sexual satisfaction may vary between 30 and 100%. However, in the light of the results of pre-post-treatment studies, a less dramatic, although still impressive, picture can be drawn. These studies show deterioration of sexual functioning in about one third of the patiënts, especially in the areas of sexual capacities to induce sexual arousal and orgasm. Type of treatment plays an important role in determining the outcomes on these variabels. In detail: There are 5 longitudinal studies on sexual rehabilitation during the first year post-treatment for early stage gynaecological cancer(Andersen et al., 1989; Schover et al., 1989; Weijmar Schultz et al., 1991; Lalos et al., 1995; Kylstra et al., 1999). Results are unequivocal: a stable frequency of sexual activity and sexual satisfaction as well as a decline in frequency of sexual activity and sexual satisfaction, while all investigators mention sexual response disruption over time. How to put things in perspective? According to the social learning theory (Rotter, 1954) and the sexual script theory (Simon and Cagnon, 1986) sexuality can only be evaluated in subjec­tive terms, because there is no such thing as "objective sexua­lity". Therefore, evaluation of sexual functioning after gynaecological cancer has to be operationa­lized in terms of personal subjective experiences which, on an individual level, are closely related to ideal experiences and real expe­riences. Whether a woman will suc­cessfully realise her desires depends on her psychologi­cal capacity to perform sexually in such a way that she has access to these ideal experiences. It can be seen as the outcome of a cogniti­ve process in which ideal sexual experiences and real sexual experiences are weighed against each other. What are these ideal experiences? Within our Western culture, in essence two basic motives for sexual behavior can be distinguished: attempts are being made to fulfil the need for "intimacy" and attempts are being made to fulfil the need for "sexual arou­sal". Whereas sexual arousal depends more on the perception of genital sensations and physiological functions in the genital area, intimacy is more or less independent of any physical capacity or hindrance. Therefore the effects of physical changes seem to be mediated by psychological and social processes. If, in times of crisis, sexual functio­ning contributes her longing for intimacy, she will easi­ly assess her sexual inter­ac­tion with her partner as satisfacto­ry, despite of negative sensations. On the other hand, aspects of sexual functioning that are predominantly mediated by cognition, perception, and emotion may be affected by the psychotraumatic experience of having cancer, and not by physiological factors per se. To illustrate: the answers on open-ended questions in the study of Kystra for example, showed various backgrounds of changes in sexual functioning. As a cause of negative sexual changes, cancer patients often mentioned treatment-related aspects such as pain, fatigue, less lubrication, changed orgasm, and last but not least anxiety about recurrence. Positive aspects were better communication with partners, increased mutual understanding, more careful sexual contact, and more intense feelings. Healthy women weigh the pros and cons as well. They attributed such negative influences on sexuality to busy jobs, young children, less time in general, and conflicting sexual desire, etc. Positive changes were increased feelings of freedom, fun, harmony, etc. Apparently the balance of positive and negative influences determine the outcome. But, there is still another mechanism going on: response shift. Sprangers and Schwartz (1999) define response shift as a change in the meaning of one's self-evaluation of quality of life (QL) as a result of a/ a change in the respondent's internal standards of measurement; b/ a change in the respondent's values; or c/ a redefinition of quality of life. Response shift could appear under influence of such a significant life event as contracting a life-threatening disease. Post-treatment, sexual problems could be thought to be of minor importance to patients as the main aim of course is survival. The extent to which the three components of response shift are distinct or interconnected is still unknown. The result of response shift is that cancer patients do not report a lower quality of life than the normal healthy population in spite of pain, fatique, less lubrication, changed orgasm and anxiety about recurrence. What we see therefore is a interesting phenomenon: based on the physical damage predictions can be made in terms of loss of sexual arousal and orgasm. Whether these types of 'loss' will lead to a problematic sex life, seems to be determined by other, psychological variables. Sometimes this even holds for the capacity for sexual arousal and orgasm (Weijmar Schultz, 1990). This evaluation of sexual functioning after gynaecological cancer treatment can be substituted in the general model for adaptation after traumatic events. The model indicates clearly that on a psychological level, not all changes in sexual functioning after cancer treatment automatically lead to sexual problems or dysfuncti­ons. Whether sexual dissatisfaction occurs will also depend on personal factors, social factors and the context in which these (negative) changes occur. Consequences for research If sexual functioning after genital cancer treatment indeed is part of a larger adaptation process, this has far reaching consequences for sexological research and for sexual assistence. From literature on trauma adaptation for instance we know that the process of adapta­tion is characterised by the alternation or oscilation of two subprocesses: denial and intrusion. What does this simple figure mean for sexological help and re­search? To start with the last; it makes quite a different whether people answer questions about their sexual life in the intrusion-mode or in the denial-mode. Maybe this phenomenon also explains why different results are found in studies using questionnaires versus studies using interviews. The latter show significantly more sexual problems than the first. In one of our interview studies patients were asked whether they needed professional help. Nearly all patients stated they did not need any help because they could cope adequately with their situation. However, it took most of them two hours or more to tell our interviewers that they did not had any problem. What happens with patients when we ask them questions? And, to make it even more complex: if sexual experiences are reported, is this a good or a bad sign? Feelings of anxiety and depression are often referred to as 'disorders'. From a trauma perspective these fee­lings are not disorders but are in fact normal reactions to an abnormal situation. This means that the interpretation of changes in sexual life of patients after genital cancer treatment depends not only on the actual changes but also on the theoretical back­ground the researchers use. The same holds for sexual counseling. Are sexual 'dysfunctions' , e.g. loss of libido, seen as dysfunctions or adequate reactions to a pathological situation?All by all it looks as if what holds for the patients reactions after cancer treatment, trying to 'control the uncontrollable', also holds for us investigators. And precisely that makes sexologi­cal research on this topic very interesting; you can't find the answers exclusively on the level of content; you allways have to look at the context. References Andersen, B.L., Anderson, B., deProsse, C. (1989) Controlled prospective longitudianl study of women with cancer. I. Sexual functioning outcomes, Journal of Consulting Clinical Psychology, 57, pp. 683-91. Kleber, R.J., Brom, D. and Defares, P.B. (1986) Traumatische ervaringen, gevolgen en verwerking (Lisse, Swets en Zeitlinger). Kylstra, W.A., Leenhouts, G.H.M.W., Everaerd, W., Panneman, M.J.M., Hahn, D.E.E., Weijmar Schultz, W.C.M., van de Wiel, H.B.M. (1999) Sexual outcomes following treatment for early stage gynecological cancer: a prospective multicenter study. International Journal of Gynecological Cancer , 9, pp. 378-95. Lalos, A., Jacobsson, L., Lalos, O., Stendahl, U. (1995) Experiences of the male partner in cervical and endometrial cancer – a prospective interview study. Journal of Psychosomatic Obstetrics and Gynecology,16, pp.153-65. Rotter, J,B. (1954) Social learning and clinical psychology (New York, Prentice Hall). Schover, L.R., Fife,M., Gershenson, D.M. (1989) Sexual dysfunctions and treatment for early stage cervical cancer, Cancer,63, pp. 204-12. Sprangers, M.A.G., Schwartz, C.E. (1999) Integrating response shift into health-related quality of life research: a theoretical model. Social Science in Medicine, 48, pp. 1507-15. Simon, W. & Gagnon,J.H. (1986) Sexual scripts: permanence and change. Archives of Sexual Behavior, 15, 97-120. Weijmar Schultz, W.C.M., Wiel, H.B.M. van de, Bouma, J. en Janssens, J. (1990) Evolvement of psycho­sexual functioning after treatment for cancer of the vulva, a prospective study. Cancer, 66, pp. 402-407. Weijmar Schultz, W.C.M., Wiel, H.B.M. van de & Bouma, J. (1991) Psy­chosexual functioning after treatment for cancer of the cervix, a comparative and longitudinal study, Internatio­nal Journal of Gynaecological Cancer ,1: pp. 37-46. Weijmar Schultz, W.C.M., Van de Wiel, H.B.M., Hahn, E., Van Driel, M.F. (1992) Sexuality and Cancer in Women. In: Annual Review of Sex Research (Bancroft J, Davis CM, Ruppel HJ), Vol. III, pp. 151-201. Contributors W.C.M. Weijmar Schultz, MD, Gynaecologist H.B.M. van de Wiel, MS, Psychologist J. Sex & Martial Therapy, 29(s):121-128, 2003. JCO, 3/04 Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. You can help raise awareness of CAM.