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Background In women with cervical cancer, treatment causes changes in vaginal anatomy and function. The effect of these changes on sexual function and the extent, if any, to which they distress women are not known.
Methods In 1996 and 1997, we attempted to contact 332 women with a history of early-stage cervical cancer (age range, 26 to 80 years) who had been treated in 1991 and 1992 at the seven departments of gynecological oncology in Sweden and 489 women without a history of cancer (controls) to ask them to answer an anonymous questionnaire about vaginal changes and sexual function.
Results We received completed questionnaires from 256 of the women with a history of cervical cancer and 350 of the controls. A total of 167 of 247 women with a history of cancer (68 percent) and 236 of 330 controls (72 percent) reported that they had regular vaginal intercourse. Twenty-six percent of the women who had cancer and 11 percent of the controls reported insufficient vaginal lubrication for sexual intercourse, 26 percent of the women who had cancer and 3 percent of the controls reported a short vagina, and 23 percent of the women who had cancer and 4 percent of the controls reported an insufficiently elastic vagina. Twenty-six percent of the women who had cancer reported moderate or much distress due to vaginal changes, as compared with 8 percent of the women in the control group. Dyspareunia was also more common among the women who had cervical cancer. The frequency of orgasms and orgasmic pleasure was similar in the two groups. Among the women who had cervical cancer, the type of treatment received had little if any effect on the prevalence of specific vaginal changes.
Conclusions Women who have been treated for cervical cancer have persistent vaginal changes that compromise sexual activity and result in considerable distress.
In areas with a high frequency of screening for cervical cancer, the majority of new cases are diagnosed in middle-aged women who have early-stage cancers. These women have an excellent prognosis,12 and most of them live for many years with the sequelae of the disease and of its treatment. We conducted a study to determine the prevalence of vaginal changes among women who had been treated for cervical cancer and the extent to which these changes affected their sexuality and caused distress.
Methods
We attempted to enroll all 332 women under the age of 80 years with a history of early-stage (IB or IIA12) cervical cancer who had been treated at the seven departments of gynecological oncology in Sweden between January 1, 1991, and December 31, 1992, and who were registered and alive on November 1, 1996. We randomly selected 489 women without cervical cancer, matched for age and region of residence, from the Swedish Population Register, as a control group. Between November 1996 and May 1997, we sent these 821 women a letter explaining the objectives of the study and inviting them to participate in it. Those who did not return the enclosed response form within two weeks were telephoned. Of the 821 women, 708 agreed to be included in the study. They were then sent a questionnaire about vaginal changes and sexual function, to be answered anonymously, and a registration form to be returned separately. All information about treatment was obtained from the women in order to safeguard their anonymity. The study was approved by the Regional Ethics Committee at the Karolinska Institute.
The questionnaire, which was developed on the basis of successive in-depth interviews with patients and clinicians, was similar to our questionnaire on male sexual function.13,14 It included 136 questions for the women who had cervical cancer and 115 questions for the controls. It was designed to assess the symptoms of sexual dysfunction, such as reduced sexual interest; altered responses to sexual arousal; vaginal shortness and inelasticity; the frequencies of intercourse and orgasm; and orgasmic pleasure. We classified painful intercourse (dyspareunia) according to the location, with "superficial" referring to the introitus, or outermost part of the vagina, and "deep" referring to the apex of the vagina or within the pelvis.
We asked about the characteristics of each symptom (frequency, intensity, duration, and quality) and the degree of distress it caused. For example, the question, "Have you noticed during the past 6 months that the moistness of your vagina (lubrication) has not been sufficient for sexual intercourse?" had the following possible answers: "Not relevant, I have not engaged in intercourse," "Not at all," "A little," "Moderately," and "A lot." The corresponding distress was assessed on a verbal scale of intensity15 with the question, "If you have noticed during sexual activity that the moistness of your vagina (lubrication) was diminished during the past 6 months and if this were to persist for the rest of your life, how would you feel about it?" The possible answers were "Not relevant," "It does not distress me at all," "It distresses me a little," "It distresses me moderately," and "It distresses me a lot." Information was also collected on potential confounding and effect-modifying variables, such as level of education, occupation, employment status, prior sexual abuse, concurrent diseases and their treatment, recurrence of cancer, and estrogen-replacement therapy.
In Sweden, the standard treatment for women with early-stage cervical cancer is surgery with or without preoperative intracavitary radiotherapy, the latter at the discretion of the physician responsible. The surgery typically consists of radical hysterectomy and resection of pelvic lymph nodes. Most women with lymph-node metastases are treated postoperatively with external radiotherapy. Women who are not candidates for surgery because of advanced age or concomitant disease are treated with radiotherapy alone.
The responses to the questionnaire were dichotomized, and the results are presented as relative risks, calculated as the proportion of women who had cervical cancer reporting the particular problem divided by the proportion of controls reporting it. Estimated relative risks and associated 95 percent confidence intervals were adjusted for age by the Mantel–Haenszel method.16,17
Results
Information was supplied by 256 (77 percent) of the 332 women with a history of cervical cancer and 350 (72 percent) of the 489 controls. Their mean ages at the time of answering the questionnaire were 51 and 52 years, respectively, but the age distribution within the groups varied (Table 1). Among the women who had cervical cancer, the mean age at the time of treatment was 45 years. The proportion of women living alone at the time of the study was higher in the group of women who had cervical cancer than in the control group. The distribution of treatments is shown in Table 1. Fifty-six percent of the women who had cervical cancer were using oral or transdermal estrogen, as compared with 21 percent of the controls. Thirteen women who had cervical cancer reported a recurrence of the cancer, which persisted in 3 of the 13 at the time of the study.
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Approximately half the women in both groups reported infrequent orgasms (less than twice per month), and 7 percent of the women in both groups reported that they had not achieved orgasm in the previous six months despite being sexually active. Nine percent of the women in each group reported little or no orgasmic pleasure.
Superficial or deep dyspareunia was more common among the women who had cervical cancer than among the controls at the time of the study, whereas it was uncommon in both groups five years earlier. Vaginal bleeding during intercourse was also more prevalent among the women who had cervical cancer. Vaginal shortness was associated with superficial and deep dyspareunia, whereas reduced elasticity and lubrication were associated with superficial dyspareunia only (data not shown). Fifty-seven percent of the women who had cervical cancer and 36 percent of the controls reported moderate or much distress at the prospect of having persistent problems with intercourse.
Treatment with surgery alone was associated with increased risks of insufficient vaginal lubrication, vaginal shortness, and reduced vaginal elasticity (Table 4). As compared with surgery alone, intracavitary or external radiotherapy or both in addition to or instead of surgery had a small effect, if any, on the risks of reduced vaginal lubrication, reduced genital swelling, vaginal shortness, or vaginal inelasticity.
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Thirty-two percent of the women who had cervical cancer and 25 percent of the controls reported little or no satisfaction with their present sexuality. When asked about how they would feel if their sexual problems persisted for the rest of their lives, 39 percent of the women who had cervical cancer and 34 percent of the controls with such problems reported that they would experience a moderate or high level of distress.
Discussion
We found that women who had been treated for cervical cancer had changes in their vaginal anatomy and function that had negative effects on their sexual function. The changes included decreased lubrication and genital swelling during arousal and reductions in perceived vaginal length and elasticity during intercourse. Furthermore, a large proportion of the women indicated that they were distressed by these changes and their effects on sexual intercourse.
Although numerous studies have documented the distress associated with the loss of a breast, changes in the vagina have been neglected in this respect. A Medline search performed in mid-1998 with the combined terms "cancer," "breast," and "distress" yielded 197 references. In contrast, a search in which the term "vagina" was substituted for "breast" yielded only two references. One might assume that vaginal changes would affect sexual function at least as much as the loss of a breast. An obvious reason for the predominant interest in the breast is that, in developed countries, breast cancer is more common than cancer of the female genital organs.18 Nevertheless, the paucity of literature on the effect of vaginal changes is noteworthy, and it may not be irrelevant to speculate about nonscientific reasons. For men, female breasts may have aesthetic as well as sexual value, which may influence research policies in academic medicine, where male investigators predominate.
Vaginal changes that may restrict coital pleasure include those that cause pain or bleeding during intercourse, those that interfere with the pleasure of feeling penile penetration and movement, and anatomical changes that interfere with achieving orgasm. The prevalence of dyspareunia was high among the women with a history of cancer whom we studied, and this disorder may be related to various changes in the vagina. In our study, disease status did not explain the relation between the specific vaginal changes and dyspareunia, and it is unlikely that the women with dyspareunia had pain because sexual activity reminded them of their cancer. Damage to peripheral nerves and small vessels as well as hormonal deficiencies and fibrosis may influence vaginal lubrication and genital swelling. Surgical removal of tissue, adhesions within the pelvis, and fibrosis may contribute to the perception of vaginal shortness and inelasticity.
The differences between the two study groups with respect to orgasmic frequency and pleasure were small, indicating that the physical changes induced by cervical cancer and its treatment do not influence this aspect of sexuality. An intact clitoris may be sufficient for satisfactory orgasm, and our data indicate that the absence of the uterus has little effect in this regard.
The percentage of women who had initiated sexual intercourse regularly was similar in the two groups. We did not determine the predictors of this variable, and we do not know whether some women, for instance, have intercourse primarily to satisfy their partners, rather than to satisfy themselves. It is reasonable to assume that pain during sex and possibly also bleeding reduce pleasure for women. One interpretation of our findings is that the frequency of intercourse is not an appropriate measure of the effect of treatment on sexual function in women with cancer.
Many of the women who had cancer had probably been castrated as a result of surgical removal of the ovaries, a disturbed blood supply due to surgery, or radiotherapy. Castration lowers serum testosterone and estrogen concentrations. Apart from the women who underwent radiotherapy alone, libido did not differ among the women according to the treatment they received. We have no information on serum hormone concentrations, but our data suggest that ovarian hormones have minor effects, if any, on libido and the frequency of intercourse in women treated for cervical cancer.
A probable mechanism for some of the vaginal changes associated with the treatment of cervical cancer is reduced estrogen secretion. Lubricants and systemic and, to a lesser degree, local estrogen therapy, which increase lubrication, were used more often by the women who had cervical cancer than by the controls. In addition, psychological and sociological factors probably have an important role in sexual behavior. The women in the two groups reported a similar level of satisfaction with their partners, but more of the women who had cancer were single, suggesting that some relationships end as a consequence of cervical cancer. Our findings confirm the observation that infertility may be a major problem,19 but only a small proportion of women in our study associated infertility with compromised sexuality. The majority of women reported little or no distress due to the loss of the uterus.
We used an anonymous questionnaire that was answered at home. This method probably results in fewer investigator-derived errors than, for example, a personal interview or an identifiable questionnaire.20,21 Sweden maintains population-based registers that allowed us to avoid potential problems of selection. In addition, our study was national, and an effort was made to minimize noncompliance.
Physicians caring for women with cervical cancer should discuss possible disease- and treatment-related vaginal changes that may affect sexual function and should address this topic before and after treatment. We found that there was no age above which sexual function was not important to the women in our study, and efforts to prevent vaginal changes, or to relieve them after therapy, should therefore be considered for women of all ages.
Supported by grants from the Swedish Cancer Society and the Cancer Society of Radiumhemmet, Stockholm.
We are indebted to the heads of the departments of gynecological oncology in Sweden at the time of the study — Drs. Karin Boman (Umeå), Bo Frankendal (Stockholm), György Horvath (Göteborg), Thomas Högberg (Lund), Birgitta Pettersson (Uppsala), Per Rosenberg (Linköping), and Bengt Sorbe (Örebro) — who made the study possible by providing the names and addresses of the patients; and to Dr. Berit Sjögren at the Department of Female and Child Health, Karolinska Hospital, Stockholm, for valuable advice.
Source Information
From the Divisions of Gynecological Oncology (K.B., E.Å.-L.) and Clinical Epidemiology (K.B., P.W.D., L.H., G.S.), Department of Oncology, Radiumhemmet, Karolinska Institute; the Department of Urology, Huddinge Hospital (L.H.); and the Division of Epidemiology, Karolinska Hospital (G.S.) — all in Stockholm, Sweden.
Address reprint requests to Dr. Steineck at Clinical Epidemiology, Norrbacka, S:2 06, Karolinska Hospital, S-171 76 Stockholm, Sweden, or at gunnar.steineck{at}onkpat.ki.se.
References
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