The current study confirms that many individuals with MM experienced disruptive sexual changes following diagnosis or treatment and engaged in active attempts to adapt their sexual practices to varying degrees. This study uniquely describes how specific MM-related consequences impact sexual expression. Consistent with the extant literature, few patients communicated with their providers about sexual concerns. Importantly, the conversations that did occur were largely generic and genital-focused and did not appear to address the unique needs reported by MM survivors.
This study is the first to report several disease- or treatment-related sexual concerns unique to MM survivors that served as barriers to engaging in sexual activity. These include experiences/fears of bone pain, bone fracture, contraction of illness or infection, and vaginal bleeding or bruising due to sexual activity. One study to date reported that fears of infection or illness are a common concern after HSCT treatment6 and may thus be common to both MM survivors and HSCT recipients, whereas concerns relating to bone disease may be more unique to MM6. High incidence of bone disease and low levels of platelets and white blood cells are known issues in MM survivors12 and were reflected in participants’ concerns. For example, they reported both experiencing bone pain as a barrier during sexual activity and fears of internal bruising as a factor causing avoidance of or anxiety about engaging in sexual activities. However, the prevalence and medical legitimacy of these concerns are unknown and represent an area of further research.
Additional barriers described by MM survivors such as low sexual desire, erectile difficulties, vaginal dryness, and dyspareunia have been well documented in other cancer populations20. Fatigue, impaired mobility, and body image disturbances reported here are also common among cancer survivors2,21. Loss of sensation due to peripheral neuropathy was reported but its effects on sexuality are not well documented2,22. Treatments for such concerns are recommended if patients exhibit significant sexual distress or want symptom management23.
Many participants described making adaptations to their sexual expression to cope with cancer-related sexual challenges. For example, they used sexual medications, non-medical sexual aids, modifying sex (e.g., less strenuous positions, non-penetrative activities), and switching to solitary sexual activities. Similarly, emphasizing non-penetrative forms of sexual activity has been identified as a useful strategy for cancer survivors and older adults24,25.
Not all participants reported making adapting sexual expression. Consistent with previous studies, some participants avoided sexual activity, suppressed sexual thoughts, and felt distant from their partners because of sexual challenges26. Participants in other studies have also reportedly prioritized survival and were less concerned with sexuality27.
Consistent with prior studies, patient-provider sexuality discussions were limited20. This is unsurprising as the absence of research documenting sexual concerns post-MM has hindered providers’ capacity to have informed conversations about sexuality2,21. Only a small subset of the sexual concerns reported by participants were addressed by their providers and recommendations primarily aimed to restore penetrative intercourse and ignored psychosocial aspects of sexuality. Body image disturbances and fatigue were also significant but conversations about how these concerns impacted sexuality were absent. Additionally, none of the disease-specific barriers participants described experiencing were mentioned as discussion topics during patient-provider conversations. This suggests that when sexuality conversations occur, they may not be tailored to the range of concerns MM survivors describe.
There appeared to be gender differences in patient-provider communication about sexuality characterized by men reporting this more often. Barriers to sexual health communication may differentially impact individuals based on gender. For example, men’s treatment focused on erectile function and excluded psychosocial considerations known to enhance sexual activity after cancer29. This trend may reflect erectile dysfunction (ED) being the primary sexual concern in men8 and the nature of available treatments30, specifically ED medication which is typically viewed as successful, acceptable, and time efficient. In contrast, women tend to endorse a wider variety of sexual symptoms5 which providers often feel less confident in treating30. Furthermore, treatments may need to be multi-modal and may be considered less effective, less acceptable, and more time-consuming30,31.
Patient perceived barriers to communication may also play a role. Participants in this study reported feeling their concerns were not taken seriously, feeling uncomfortable discussing a stigmatized topic, believing sexuality is outside their provider’s area of expertise, not viewing sexuality as a priority, and time constraints. These barriers are consistent with those identified in other studies of cancer survivors and do not appear unique to MM27,32.
Recommendations for Improving Patient-Provider Communication About Sexuality. To meet the diverse and disease-specific sexual concerns endorsed by MM survivors, it is pertinent to look beyond genital functioning. Providers should prepare to give recommendations relating to bone health, infection/illness, bleeding/bruising, fatigue, and peripheral neuropathy. Attending to concerns about body image disturbance and relationship adjustment and being able to provide appropriate referrals (e.g., to psychosocial services) is an important form of support. Communication barriers can be mitigated using routine screening tools (e.g., 5-item Sexual Distress Scale – Short Form34 ) and open-ended questions about sexuality22,32.
Given the disease-specific barriers that those with MM described, the following recommendations may be helpful to consider:
i) Bone Disease-Related Concerns. Patients with bone disease complications who wish to engage in penetrative intercourse could experiment with different sexual positions to avoid discomfort. Consultation with an occupational therapist can also address assistance with positioning10,11,37. The American Cancer Society provides illustrations of low-impact positions for sex after cancer10,11 but this resource may be less applicable to non-heterosexual couples10,11. Body supports (e.g., pillows, massage tables) can alleviate pressure on bones and joints10,11. Finally, taking pain medication one hour before sexual activity, focusing on fantasies, and exploring non-penetrative forms of sexual activity (e.g., mutual masturbation, erotic massage) may also be useful strategies10,11.
ii) Infection Related Concerns. Concerns about the risk of infection during chemotherapy is common. Infection risk is deemed higher when the patient’s neutrophil counts are <0.5 with the risk of mucosal bleeding higher when the platelet counts are <10. Clinicians often advise caution when partaking in high intensity or impact physical activity when these laboratory parameters are met. As such, individual risk during sexual intercourse should be assessed, considering individual and disease-related factors. Patients whose fear of infection outweighs the risks should be counselled, as they may be unnecessarily avoiding sexual activity.
iii) Bleeding/Bruising Related Concerns. Apprehension around bleeding during chemotherapy is common, and should be discussed and rationalized, and any experiences should be investigated and managed. These concerns were limited to women. Counselling regarding modifying sexual positioning and incorporating more non-penetrative/external vulvar stimulation may be appropriate.
Finally, an interdisciplinary approach for sexual concerns is recommended. This approach allows patients to understand their unique risk factors from a medical perspective, assess their values and risk tolerance from a psychosocial perspective, and assist with positioning and strengthening from a rehabilitation perspective. Providers should thus have a referral network and a variety of resources to accommodate diverse sexual concerns2. An excellent table outlining types of providers and appropriateness for referral can be found in Richards et al., (2011)2.
Clinical Implications. Researchers should continue to characterize sexuality in the MM population so that survivorship care is tailored to their unique needs. Providers should assess possible risks for MM patients engaging in sexual activity, have discussions about sexuality with their patients, and help patients adapt their sexual expression after diagnosis. A comprehensive referral network can further improve the healthcare experiences of people with MM.
Limitations and Future Directions. The first limitation to this study is a lack of diversity in terms of ethnicity and gender identity in the sample which may limit the generalizability of findings. Second, participation was based on self-selection, and it is unclear whether experiences would differ among those who decided not to participate. Third, online recruitment may have excluded those with technological barriers to participation. Fourth, the emergence of the COVID-19 pandemic may have affected participant responses. Finally, data quality is dependent on participant honesty15.
Future studies should better characterize sexuality in MM survivors to help providers tailor treatments and resources to their unique needs. First, qualitative studies with in-depth interviews may provide a richer understanding of how MM impacts sexuality. Second, studies should explore the prevalence of the mentioned MM-related barriers for engaging in sexual activity and how distressed patients are about these concerns relative to other sexual concerns. Third, the medical legitimacy of MM-specific concerns should be assessed to inform clinical recommendations for risk assessment and recommendations. This may be particularly helpful for individuals who avoid sexual activity due to fears of consequences (e.g., internal bleeding) without knowing the odds of this occurring. Fourth, examining dyadic perspectives would allow better insight into interpersonal dynamics. Finally, the sexual impact of peripheral neuropathy described in this study is a poorly understood but potentially broadly relevant topic that is worthy of further investigation.