Hidradenitis suppurativa and intimacy

In this issue, Alavi et al. (2018) address the important problem of sexual health in patients with hidradenitis suppurativa (HS). In a cross-sectional, case-control study, Alavi et al. compare the quality of life as measured by the Dermatologic Quality of Life Index with four validated questionnaires on sexual health in 50 patients with HS and matched controls (Finlay and Khan, 1994). The research found that HS-related disturbances of sexual health could predict 72% of the Dermatologic Quality of Life Index score reduction in men and 46% in women.

It is not the first time that HS has been identified as a cause of impaired sexual health and health-related quality of life but medical science mostly works not by offering absolute associations but rather through incremental data that substantiate a suspected association. Therefore, it is important to have data from different populations to even out temporal, social, cultural, economic, and other factors that may otherwise influence our interpretation of data. Previous studies have documented similar problems in Dutch and German populations (Janse et al., 2017, Kurek et al., 2012). The important questions are, which aspects of HS are responsible, and how do we best help our patients?

Several aspects of this complex inflammatory skin disease may be involved including general and local physical comorbidities. The general physical comorbidities of HS such as metabolic syndrome and cardiovascular disease may play an independent role in the impaired sexual health of HS in both male and female patients (Miner et al., 2012, Schulster et al., 2017). Similarly, more localized mechanical problems due to arthritis may influence the sex life of patients (Schneider-Burrus et al., 2016). These factors require awareness from the dermatologist and often a collaboration in a multidisciplinary setting with internal medicine specialists and others.

HS is not without symptoms itself, and physical problems may be directly linked to the diagnosis of HS. Pain and itching are prominent skin symptoms among patients and with the locations of the lesions on skin that is often involved in sexual intimacy, disease control becomes of the utmost importance (Ring et al., 2016a, Ring et al., 2016b, Zouboulis et al., 2015). Patients often have undisclosed but extensive self-management regimes of HS-associated pains that need to be asked for specifically to be identified (Ring et al., 2016a, Ring et al., 2016b). During a clinical examination, the sizes of the affected areas have been found to associate with pain (Vangipuram et al., 2016).

Most patients with HS, however, report having a sexual partner, which suggests that the impairment is not absolute and therefore, the psychological comorbidities also play a role. Patients with HS not only score lower on quality of life questionnaires but also have significant scores on depression and anxiety indices, all of which has relevance to impaired sexual health (Kouris et al., 2016, Shavit et al., 2015).

The psychological comorbidities are clinically highly significant. A recent nationwide Danish registry study found that patients with HS have a significantly higher risk of completed suicide than the rest of the population, which indicates that psychological comorbidities may be even more significant to the lives of patients with HS than their physical comorbidities although even here patients show a higher overall mortality (Egeberg et al., 2016, Thorlacius et al., 2018). For optimal management, this requires dermatologists to be aware of these comorbidities and occasionally the collaboration with clinical psychologists or psychiatrists.

Finally, and perhaps most importantly, the nature of the disease may profoundly influence sexual health. The disease is stigmatizing not due to the nature of the inflammatory lesions but the lay perception of the lesions as unclean (Esmann and Jemec, 2011, Matusiak et al., 2010). This stigma is likely associated with low resilience, partner violence, and a plethora of other negative elements in the lives of patients with HS (Kirby et al., 2017, Sisic et al., 2017).

For this issue to be addressed meaningfully, we need professional empathy. All patients require our empathy but few dermatological patients suffer from diseases with a similar negative effect on the life-course of the average patient (Ibler and Jemec, 2013). In this context, the paper by Alavi et al. is an important contribution to the literature and reminds us of the private plight of our patients. The paper reminds us of the need to ask, to learn, and to empathize in order to heal.