Psychosexual Adjustment Following Pelvic Exenteration

Abstract

Fifteen pelvic exenteration patients from 2 institutions participated in semistructured interviews and objective assessment to examine postoperative psychologic, social, and sexual functioning. Analyses of variance indicated significant differences between the sexually active and nonactive patients and the patients with a neovagina and those with no vaginal capacity only in the area of sexual functioning, not in psychologic or social adjustment. Descriptive statistics for the entire group of patients provide a view of psychosocial adjustment for the average pelvic exenteration patient. Long after such patients are asymptomatic and clinically free of disease, they appear mildly distressed and depressed. However, these women report active and satisfactory levels of social and free-time activities. Sexual functioning continues as the area of greatest disruption for these patients and, as a group, they resemble severely sexually dysfunctional healthy women. This investigation provides a substantive look at the post-treatment life circumstances of these patients and offers a data base for future investigations.

Pelvic exenteration is a mutilating operation that has gained acceptance for treating centrally recurrent gynecologic malignancies because of the absence of any other curative treatment method. Although much has been written about the medical aspects of this surgery, there have been few descriptive studies of the psychologic adjustment required or the alteration in sexual functioning that occurs for these patients.

Previous psychosocial studies of gynecologic oncology patients have relied primarily on semistructured interviews with the patients conducted by primary-care physicians or consulting social service personnel. On occasion, this strategy has been supplemented with global measures of personality or projective techniques such as the Rorschach test for assessing unconscious processes.¹ Neither of these latter techniques was viewed as appropriate since personality measures do not provide an estimate of current functioning and projective techniques have reliability and validity limitations. Thus, for the present investigation, an assessment strategy was designed to elicit unique experiences of the participants as well as standardized information using objective psychologic measures enabling comparison of the sample with relevant normative groups.

This strategy has been previously discussed² but will be overviewed briefly. The plan of the investigation was to obtain a description of 3 domains seen as important for these patients: psychologic, social, and sexual functioning. A more specific interest was the patients’ present functioning in these areas, and inferences or attempts to assess pre-exenteration or even precancer status were kept to a minimum. It was believed that the most accurate perspective could be obtained by gathering data on present functioning rather than by focusing on a retrospective report of pretreatment functioning, which is subject to bias and memory deficits. An attempt was also made to obtain a sample large enough to allow generalization to the population of exenteration patients.

Standardized tests that have demonstrated reasonable reliability and validity and have provided normative data for normal and clinical samples were used. In this way, the present data could be compared with that of other investigators testing other clinical groups (eg, psychiatric patients, healthy but sexually dysfunctional women, cancer patients, individuals with poor social adjustment, and maritally distressed couples). Objective data that could also be useful for future investigators studying exenteration patients or other oncology groups were then generated.

Materials and Methods

Subjects participated in an extensive descriptive assessment lasting approximately 2 hours. Patients were contacted by an author at their respective institution and the assessment was conducted during follow-up clinic visits to the Divisions of Gynecologic Oncology at the University of California at Los Angeles or the University of Iowa at Iowa City. During the first hour an individual semistructured interview was conducted by the first author, who was unfamiliar to the patient and naive to all aspects of the subject’s gynecologic treatment and psychosocial functioning. A questionnaire battery was completed by the subject during the second hour. Because of time limitation, a few subjects completed a portion of the questionnaires at home.

Description of the 15 participants (13 white, 2 black) is provided in Table 1. At the time of the interview, the mean age of the sample was 54 years. The average time since surgery was 5 years, 6 months, and all patients were clinically free of disease. The sample had completed high school and had taken on additional coursework in college or professional school. Fourteen subjects were Protestant and one Catholic, with the typical patient describing herself as religious. Total family income was on the average less than $8000 per year, with the patient’s assets contributing approximately 45% of the annual total. Seven patients lived alone, and 8 lived with a spouse or partner, 2 of these women also living with their children.

Table 1.

Descriptive Characteristics of Pelvic Exenteration Sample

Subject	Location	Age (yr)	Months since operation	Marital status pre/post exenteration	Employment or position	Initial diagnosis (site and stage)	Previous treatment	Type of exenteration	Neovagina type
1	CA	57	122	M/D	Unemployed; disability	Cervix; Ib	Radiotherapy; TAH/BSO	Total; subsequent colostomy closure	Split-thickness skin graft
2	CA	45	16	M/M	Housewife	Cervix; IIb	Radiotherapy	Total	Gracilis myocutaneous graft
3	CA	53	17	M/M	Housewife; mother	Cervix; IIIb	Radiotherapy	Total	Gracilis myocutaneous graft
4	CA	49	84	M/D	Unemployed; disability	Vagina; II		Total	Split-thickness skin graft
5	CA	51	32	D/D	Unemployed; disability	Cervix; IIb	Radiotherapy	Total	Williams vaginoplasty
6	CA	56	91	M/M	Housewife	Cervix; IIb	Radiotherapy	Total	Split-thickness skin graft; subsequent Williams vaginoplasty
7	CA	47	17	D/D	Office manager; mother	Cervix; IIIb	Radiotherapy	Total	Gracilis myocutaneous graft
8	CA	28	7	M/M	Housewife	Cervix; Ib	Radiotherapy; TAH/BSO	Total; subsequent colostomy closure	Gracilis myocutaneous graft
9	CA	73	103	M/D	Retired	Cervix; IIb	Radiotherapy	Anterior	Split-thickness skin graft
10*	CA	54	22	M/M	Housewife	Cervix; Ib	TAH; radiotherapy	Total; with radical vulvectomy	None; declined reconstruction
11	IA	56	135	W/W	Part-time housekeeper	Cervix; IIb	Radiotherapy	Total	None; declined reconstruction
12	IA	61	84	W/M	Housewife	Cervix; unstaged	Radiotherapy	Total; colostomy closure	Williams vaginoplasty
13	IA	50	80	W/W	Unemployed; disability	Cervix; Ib	Radiotherapy	Total	None; declined reconstruction
14	IA	55	111	M/M	Housewife	Cervix, in situ	TAH	Anterior	Split-thickness skin graft
15	IA	70	27	D/D	Retired	Cervix; Ib	Radiotherapy	Total	None; declined reconstruction

CA = California; M = married; D = divorced; TAH = total abdominal hysterectomy; BSO = bilateral salpingo-oophorectomy; IA = Iowa; W = widowed.

^*Because of the nature of this patient’s surgery, data from assessment measures were initially excluded from analyses. However, comparisons were made with the mean values from the subgroups to which she belonged (CA sample, not sexually active, no vaginal capacity) and her data fell into the same patterns.

Assessment Measures

Psychologic Distress

Symptom Checklist-90.³

This is a 90-item self-report inventory covering common complaints of medical and psychiatric outpatients. A subject rates how each symptom has bothered her during the past week on a 5-point scale from not at all to extremely. Nine symptom areas and a global index of current psychologic distress are scored.

Beck Depression Inventory.⁴

This is an inventory of 21 depressive symptoms (eg, crying, sleep problems, weight loss, thoughts of self-injury) and attitudes (eg, feelings of failure or worthlessness, discouragement about the future, loss of interest in other people). The subject is asked to indicate which of 4 statements for each item best describes herself during the past month. The purpose of this inventory is to establish the stability and pervasiveness of depression for an individual rather than the existence of a transitory sad mood.

Psychosocial Adjustment

Katz Social Adjustment Scales.⁵

This inventory assesses an individual’s performance of social (eg, visiting friends, relatives, neighbors) and free-time (eg, hobbies, community activities, reading) activities. The subject indicates whether she performs each activity frequently, sometimes, or never. She next indicates whether she is satisfied with this level of activity or would like to be doing more or less. Four scores are obtained: level of social activities, satisfaction with social activities, level of free-time activities, and satisfaction with free-time activities.

Marital adjustment

For women engaged in an ongoing heterosexual relationship, a modified version of the Dyadic Adjustment Scale⁶ was used to assess their self-reported satisfaction with the arrangement. It includes areas of possible disagreement (eg, finances, religion, household tasks, career decisions), satisfaction (eg, laughing together, working together on a project), and global descriptions of its current status (eg, extremely unhappy to a perfect relationship).

Sexual Functioning

Derogatis Sexual Functioning Inventory.⁷

Four subtests were selected for use. The past and current activities scale includes a variety of sexual behaviors from kissing to intercourse. Respondents indicate activities in which they have ever participated for the past scale and indicate which have occurred in the last 60 days for the current scale. This then provides estimates of the subject’s sexual repertoire as well as the range of current activity. The satisfaction scale assesses satisfaction with foreplay, orgasm, and partner’s performance. The body image scale includes 15 attitude statements about general bodily appearance and sexual body parts. Finally, one item provides a global evaluation of the subject’s current sexual life. Subjects pick one statement along a 9-point scale to describe their present sexual life. The following descriptors were used: 0 = could not be worse; 1 = highly inadequate; 2 = poor; 3 = somewhat inadequate; 4 = adequate; 5 = above average; 6 = good; 7 = excellent; and, 8 = could not be better.

Heterosexual Behavior Hierarchy.⁸

This is a hierarchic listing of 23 sexual behaviors (eg, kissing, intercourse, touching partner’s genitals). Subjects rate each item on a 7-point scale from 0 (no anxiety) to 6 (extreme anxiety) in terms of the nervousness, tension, or anxiety they experience when engaging in the behavior.

Sexual Arousal Inventory.⁹

This inventory includes 28 sexual/erotic experiences (eg, dancing, intercourse, reading erotic literature). Subjects report the degree of pleasant sexual arousal experienced during each activity from −1 (adverse effect on sexual arousal) to 5 (activity always causes sexual arousal).

Results

Analysis of Variance

One-way analysis of variance comparisons were made for 3 main effects: sample (California versus Iowa), current sexual activity (active versus not active), and presence or absence of a neovagina. These factors were not crossed for the analyses because of the small numbers of subjects for the comparisons.

Analysis of variance comparisons were first made to determine differences due to sample. The only significant difference was for present employment status (F = 14.04, P < .0028). Whereas the majority of California patients (9 of 10) were unemployed (3 of these receiving disability payments because of their illness), the Iowa patients were approximately evenly distributed among the categories of unemployed, employed, and retired. On all other measures of psychologic, social, or sexual functioning, there were no significant differences between the California and Iowa samples.

Comparisons were next made between currently sexually active and nonactive patients. Sexually active subjects must have engaged in sexual intercourse or an equivalent activity at least once per month for the preceding 6 months to be defined as sexually active. (This is not the same as a comparison between those with and without a neovagina because included within the not sexually active group were 3 women with a neovagina; 2 of these women were without partners and one was reluctant to resume sexual activity despite an interested partner.) The only significant difference between the groups on the demographic variables was the percentage contributed by the subject to her total family income (F = 183.91, P < .0001). Because the majority of the women not sexually active were also without a partner (and an additional income contributor), they contributed approximately 80% to their family income. This was in contrast to the sexually active women, many of whom had husbands; who contributed between 1 and 10% of the family income.

The only significant difference between the sexually active and not active patients was in the area of sexual activity, as might be expected. Sexually active women reported a mean of 15 different sexual activities occurring during the previous 2 months, whereas nonactive women reported .3 activities for the same period. Among the sexually active women there was also a significantly greater frequency of intercourse and kissing: Intercourse occurred on the average once to twice per month and heterosexual kissing with their partner on 2 to 3 occasions per week. For the women who were not sexually active, intercourse never occurred and occasions of heterosexual kissing with their partner were less than once per month. Perhaps more importantly, however, the mean global evaluation of their sexual life for the sexually active women was above average, and that for the nonactive women was poor, indicating on the average dissatisfaction with the absence of sexual activity for this latter group. In contrast to these significant differences, there were no differences between the sexually active and not sexually active exenteration patients in the areas of psychologic distress or social adjustment.

Analysis of variance comparisons between the patients with a neovagina and those with no vaginal capacity also revealed significant differences in employment status (F = 5.43, P < .04), as in the geographic sample comparison. This difference reflects the fact that the majority of the patients with neovaginas were unemployed at the time of the interview, whereas some of the patients without vaginas had maintained employment or were retired. The only major area for significant differences between the groups was sexual functioning, again as expected. The neovagina patients reported a frequency of heterosexual partner kissing on the average of once per week, whereas the group with no vaginal capacity indicated a complete absence of this activity. In contrast, neovagina patients reported no masturbatory activity, although patients without vaginas reported masturbation occurring on the average less than once per month. Again as with the other comparisons, there were no differences between the groups on measures of psychologic distress or social functioning.

Descriptive Statistics

Data from the measures of psychologic distress and social adjustment for the entire sample are presented in Table 2. In terms of psychologic distress, the majority of subtest scores for the symptom checklist were 0.5 to 1.5 standard deviations above the mean expected for normal, healthy individuals.¹⁰ The lowest scale score was for hostility and the highest for anxiety. However, the reader is cautioned not to interpret the scale scores as separate and distinct dimensions of somatization, anxiety, depression, or other conditions. Intercorrelations were calculated between the 9 subscales and the global index. Forty-three of 45 correlations were significant and positive, ranging from .53 to .96. Thus, the subscales should be regarded as tapping related and perhaps similar dimensions of global psychologic distress rather than, for example, anxiety or depression per se. A score of 10 on the Beck Depression Inventory has been recommended as a cutoff score for medical patients,¹¹ in contrast to the score of 13 that is often used for healthy normal individuals. The 12.28 mean for this sample corroborates the findings from the Symptom Checklist-90 and indicates a mild level of depression or distress for the exenteration patients as a group.

Table 2.

Descriptive Statistics from Assessment Measures

	Mean raw score	Percentile	Description
Psychologic distress
Symptom Checklist-9010
Somatization	.71	82nd
Obsessive–compulsive	.70	78th
Interpersonal sensitivity	.71	85th
Depression	.91	85th
Anxiety	.91	88th
Hostility	.45	73rd
Phobic anxiety	.37	84th
Paranoid ideation	.50	76th
Psychoticism	.34	85th
Global Severity Index	.70	85th
Beck Depression Inventory4	12.28
Psychosocial adjustment
Social adjustment5
Level of social activities	39.86		Mean for well-adjusted criterion group = 40.1
Satisfaction with social activities	1.71		Mean for well-adjusted criterion group = 4.7
Level of free-time activities	39.82		Mean for well-adjusted criterion group = 43.8
Satisfaction with free-time activities	12.36		Mean for well-adjusted criterion group = 26.8
Marital adjustment13	104.33		Mean for average married couples = 114.8
			Mean for average divorced couples = 70.7

The measures used to assess psychosocial adaptation clearly reflect satisfactory adjustment. The social adjustment scores are comparable to those provided for adjusted normals.¹² In fact, these patients reported engaging in more and having greater satisfaction with their level of social and free-time activities. This may be due partially to the majority of the exenteration patients being unemployed and/or on disability. As such, the patients in this sample may have had more freedom in their schedules to maintain social/free-time activities than did the normative samples. It is also important to note that the level of performance of social and free-time activity subscales of the social adjustment inventory were significantly and negatively correlated with the measures of psychologic distress, P ranging from −.62 to −.84. This may indicate that if women are able to maintain their activities, they may be less prone to psychologic distress, or vice versa. The mean score of 104 on the measure of marital adjustment approximates the mean obtained for average nondistressed couples and is considerably better than the score of 70 reported for divorced couples.⁶

The summary of the measures assessing sexual functioning (Table 3) indicates that the women in the pelvic exenteration sample are similar to those seeking treatment for sexual difficulties. In terms of the previous repertoire of sexual behavior, these women engaged in fewer numbers of different sexual activities when compared with other healthy normal women. However, at present, they report reductions in sexual activity far below the norms provided for sexually dysfunctional women.⁷ Emotionally and cognitively, these women also report limited capacity for sexual arousal for a variety of erotic activities. Scores at the 15th percentile have been previously reported by women seeking treatment for primary orgasmic dysfunction.¹³ These patients report greater sexual anxiety and a much lower level of sexual satisfaction than do sexually dysfunctional women.^7,13

Table 3.

Descriptive Statistics for Sexual Functioning Measures

	Mean raw score	Percentile	Description
Sexual repertoire and frequency of sexual activities
Past sexual activity7	17.79	20th	Mean for sexually dysfunctional women = 19.19
			Mean for nonpatient normal women = 20.05
Current frequency of intercourse	.92		Less than once per month
Current frequency of masturbation	.08		Virtually not at all
Current frequency of kissing	2.23		1–2 times per month
Current frequency of fantasy	1.23		Less than once per month
Current sexual activity7	7.71	2nd	Mean for sexually dysfunctional women = 19.19
			Mean for nonpatient normal women = 20.05
Emotional and cognitive components of sexual activity
Sexual arousability9	61.42	15th	Mean item rating 2.19 (range −1–5) = activity possibly causes sexual arousal
Heterosexual sexual anxiety8	54.91		Mean item rating 2.62 (range 0–6)
Sexual satisfaction7	4.5	14th	Mean score for sexually dysfunctional women = 4.21
			Mean score for nonpatient normal women = 8.89
Sexual identity/self-concept
Body image7	22.50	5th	Mean score for sexually dysfunctional women = 20.11
			Mean score for nonpatient normal women = 14.66
Ideal frequency of intercourse7	3.46		2–3 times per week
Current global evaluation of sexual life7	3.33	20th	Somewhat inadequate:
			Mean score for sexually dysfunctional women = 2.34 (poor)
			Mean score for nonpatient normals = 4.81 (above average)

Finally, 3 measures were used to assess sexual identity and self-concept. Globally, these women described their current sexual life as somewhat inadequate, perhaps reflected in part by the discrepancy between their current and ideal frequency of intercourse. In addition, the body image score is 2 standard deviations below the mean for normal healthy women and 0.5 standard deviation below the mean for healthy sexually dysfunctional women.⁷

Discussion

These objective data confirm previous subjective data that have suggested that cancer and its resulting treatment, specifically pelvic exenteration, constitute a distressing situation. When compared with other cancer patients’ scores on the Symptom Checklist-90,¹⁴ these scores do not indicate the women to be uniquely distressed, although they report disruption long after they are asymptomatic and apparently free of disease. In fact, during the interviews some patients reported understandable concerns of cancer recurrence given the course of their disease, and feelings that they might be overly responsive to aches and pains due to such fears. As a group they experience substantial and significant levels of distress, as indicated on the Symptom Checklist-90 and the Beck Depression Inventory, in comparison to healthy women; however, this may represent the chronic life circumstance for cancer patients or those who have had a recurrence rather than the singular condition of pelvic exenteration patients.

From another perspective, however, these patients were able to maintain a reasonable level of adjustment in major life areas. Reports obtained from the interviews may be useful in interpreting these findings. Certainly some activities, such as swimming, dancing, and horseback riding, become impossible for some patients due to leg swelling or chronic fatigue. Other patients not so incapacitated are able to maintain these activities. Perhaps a more common social restriction voiced by several patients was due to a colostomy. Many described hesitancies to dine out or stay overnight because of the paraphernalia they would have to bring or the hours spent in the bathroom in the morning. Yet, it appears that at least most patients can maintain high levels of, and satisfying involvement in, social and independent free-time activities. Also, to the extent that a patient is able to maintain or begin such activity, she may also experience or report less distress about her situation.

In terms of marital adjustment, women engaged in ongoing heterosexual relationships at the time of the interview described them as stable and satisfactory, corroborating the findings from the adjustment scale. Three of the 5 women who were divorced reported that this had occurred shortly after their cancer diagnosis or during the period of recovery from exenterative surgery. These women believed that their marital difficulties were not due to the body changes that resulted; instead, they viewed their spouses as becoming frightened of cancer and its life-threatening course, a fear which brought new stresses or exacerbated existing ones. These unfortunate situations are in contrast to the experience of one woman who was a widow at the time of surgery. She has subsequently remarried, describes herself as quite happy, and chose the descriptor “could not be better” to describe her sexual relationship with her husband.

As other reports have suggested,^1,15–17 the complete loss of sexual activity for some patients and the significant disruption of this function for virtually all patients was a clear outcome. These women reported previously having varied sexual lives, and at this point there is a marked reduction in sexual activity. In addition, the majority of the women desired at least a 3-fold increase in activity when indicating an ideal frequency of intercourse.

When comparisons were made between the sexually active and nonactive women, 2 important subgroups within each area were identified—those women who were satisfied and those who were dissatisfied with their present situation. For the satisfied sexually active women (N = 4), the vaginal reconstruction had gone well and they were able to maintain a satisfactory level of activity. The dissatisfied group (N = 3) reported disruption in the frequency of sexual activity, dissatisfaction with variety of the activity or their arousal, or problems with the neovagina or its use (eg, the length was too short, the cavity too large, there was a chronic discharge, painful intercourse). The group not sexually active included both women who were content with the end of their sexual activity (N = 4) and those who were not (N = 4). This latter group included women who had a neovagina but were without a partner and one woman who was uncomfortable about resuming sexual activity despite an interested partner.

Disruption in activity was coupled with emotional responses or cognitions that also hindered sexual adjustment. These women report levels of sexual arousal, satisfaction, and sexual anxiety that are comparable to those reported by healthy women with sexual difficulties assessed by other investigators.^7,9,13 Some women reported such fears as having their partners see them nude or only partially clothed. Some women without partners were reluctant to initiate even friendly contact with men due to concerns about sexuality. Not knowing how to describe their bodily changes, of fear of being seen as repulsive and thus being rejected, kept some women from male companionship even aside from any sexual involvement that might ensue.

An area of importance for these women is sexual identity or self-concept. One important component is body image. Investigators have noted the significance in this area for gynecology–oncology patients,¹⁸ and one study has found greater disruption for pelvic exenteration patients than for hysterectomy or vulvectomy patients.^l9 The data from the present investigation corroborate the magnitude of body image disturbance for these patients. Objective evidence indicates that reconstructive surgery does not significantly enhance body image; however, incidental reports from patients lead these investigators to believe that it may have a positive impact as individual women have reported not feeling like a woman until reconstructive surgery was performed. Vaginal reconstruction performed well with few continuing complications enables some patients to maintain a sexual relationship that addresses their needs, given the circumstances imposed with a life-threatening disease. Until more women are followed and evaluated, the effects of vaginal reconstruction on body image for the typical patient remain unknown.

The observations from this study may be of assistance for future patients. Although virtually all (14 of 15) patients reported that they would go through this surgery again to survive, there was not a consensus on the preparatory information received. Approximately half (N = 6) the patients felt they were adequately informed about the exenteration procedures; pelvic drawings were provided with verbal explanations, and multiple discussions were held to minimize confusion. Ostomy professionals were also valued. For the other patients, the information was somehow inadequate in quantity or quality.

All patients undergoing reconstructive surgery believed discussion of sexual functioning was inadequate. All reported minimal information or an unrealistic impression of what to expect from their neovagina. It would seem that there is no basis for statements such as, “Sexual intercourse will feel the same,” or “You should be able to have intercourse just as you do now.” Although providing a passage for penile penetration, most women complained of an inability to voluntarily constrict the vaginal introitis. In addition, some stated that the neovagina was too short, too large, or associated with a chronic discharge. Some women (N = 3) could maintain their orgasmic ability, but for others orgasm was lost or achieved only with extra effort. All women believed there should be discussion regarding sexuality with the woman and her partner before and following surgery by a trained individual comfortable in such matters. In most cases, expertise in the treatment of sexual dysfunction would also seem advisable.

In summary, a profile of psychosocial adjustment for the pelvic exenteration patients in this sample has emerged. Psychologically, these women remain a mildly distressed and depressed group. They engage in reasonable levels of social and free-time activities. Disruption of sexuality, however, is a clear outcome for virtually all patients. This includes reduction in the frequency of sexual activity, low sexual arousal and satisfaction, and disruption of sexual confidence and body image. These difficulties appear to be more or less distressing to a patient depending on the availability of a sexual partner and the patient’s own desire for the continuation of her sexual life.