Hidradenitis suppurativa (HS)/acne inversa is a recurrent, chronic, inflammatory, debilitating skin disease of the hair follicle that usually presents after puberty with painful, deep-seated, inflamed lesions in the apocrine gland-bearing areas of the body [1
]. As the disease progresses, permanent scarring occurs in the form of sinus tracts. These lesions, besides pain, can cause suppuration, unpleasant odor and pruritus.
The World Health Organization (WHO) defines quality of life as an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns [2
]. It is a broad-ranging concept affected in a complex way by the person’s physical health, psychological state, personal beliefs, social relationships and their relationship to salient features of their environment [2
]. Recent studies show that the reduction in quality of life in patients with HS is one of the most significant among dermatological patients and comparable to other diseases such as cancer, diabetes, cardiovascular disease and chronic obstructive pulmonary disease [3
According to WHO, sexual health is a state of physical, mental and social wellbeing in relation to sexuality [6
]. Sexuality is considered to be quite important for maintaining good mental health and a basic need that cannot be separated from other aspects of human life [7
]. Several studies indicate that sexual function is directly related to quality of life [8
]. Chronic diseases can have a negative impact on sex life through different mechanisms [10
Psoriasis is the most investigated chronic dermatological disease in terms of its impact on patients’ sexuality. Measured using validated questionnaires, the prevalence of sexual dysfunction varies between research from 40% to 55.6%, with patients with psoriasis having a risk of sexual dysfunction 5.5-fold higher than healthy controls [11
]. The presence of anxiety or depression, female sex, increasing age, psoriatic arthritis, genital psoriasis and psoriasis severity are factors possibly associated with sexual dysfunction [11
]. Several biologic drugs seem to improve sexual dysfunction in psoriasis patients [11
In a multicentric study in 13 European countries, 23.1% of 3485 patients reported sexual difficulties, with hidradenitis suppurativa, prurigo, blistering disorders, psoriasis, urticaria, eczema and skin infections being the diseases with highest impairment [12
]. This impact was associated with anxiety, depression and suicidal ideation [12
]. However, the research did not use validated questionnaires to explore sexual dysfunction, but instead used question 9 of the Dermatology Life Quality Index.
Regarding HS, the prevalence of sexual dysfunction in women measured using validated tools ranges from 51% to 62%, and that of erectile dysfunction in men from 52% to 60% [13
]. Factors associated with sexual dysfunction in women with HS are higher educational status, disease activity, intensity of pain and unpleasant odor, absence of a stable relationship and older age at HS onset, while in men, the factors are ageing, active lesions on the genitals and increased number of active lesions [13
]. Patients with HS also suffer from more sexual distress than the healthy population; factors related to sexual distress are female sex, active lesions in the groin and on the genitals, intensity of unpleasant odor and pain and the absence of a stable relationship [13
]. Sexual function is correlated with quality of life and with mood status disturbances (anxiety and depression) [13
]. However, there is no information about how HS hinders sex life, how patients perceive themselves, whether they experience interference in their relationships or opportunities to find a partner and, if so, what this interference is. We hypothesize that HS has a high impact on these unexplored aspects of sexuality, and the aim of this study is to investigate this and to answer the following questions: Which difficulties do patients with HS experience in sexual activity? Would they like to share these difficulties with healthcare staff? What is their sexual orientation? How attractive do they feel? How does HS influence patients who are in relationships? How does HS influence patients who are single?
2. Materials and Methods
2.1. Patients and Methods
We conducted a cross-sectional study by means of a crowd-sourced online survey from 1 March to 1 April 2018. The Spanish hidradenitis suppurativa patients’ association (ASENDHI) hosted the survey on its website and posted the survey on its social media networks [14
The selection criterion was self-referred diagnosis of HS. The study was approved by the Institutional Review Board of Hospital Universitario San Cecilio (Granada, Spain, IRB code 0105-N-20) and is in accordance with the Declaration of Helsinki. Participants were informed about the survey’s anonymity and the use of their data for research purposes, and they received no compensation for participating in the survey.
The questionnaire was developed with Google Forms®
suite and was provided in Spanish. The data presented belong to a research project about sexuality and HS. Results regarding sexual and erectile dysfunction, sexual distress and associated factors have been already published elsewhere [15
In this study, questions were created both by a panel of experts and a group of patients from ASENDHI in order to evaluate the extent to which the disease has an influence on participants’ sex lives. The survey included questions about difficulties in their sex life due to HS, which healthcare professional they would trust to share their sexual problems with, perceived attractiveness and sexual orientation. In the case of patients in a stable relationship, there were also questions about the role of their partners and how HS affects their relationships. In the case of single patients, there were also questions about their feelings when they meet new people and how HS affects their opportunities to meet people/establish a relationship. We did not use validated questionnaires because there are no tools available to explore these important factors related to sexuality and private life, since other questionnaires merely explore the presence or absence of sexual dysfunction and, as mentioned above, they have already been used on HS [15
Since the questions used were new and not validated, a control group of healthy acquaintances was also recruited by ASENDHI and a survey with all the questions not directly related to HS was distributed among them. The questions used in the present manuscript for both patients with HS and healthy controls are available as supplementary material in the original Spanish version and in an English translation (Supplementary Material File S1
Sociodemographic data, biometric parameters, use of medication for other comorbidities and several characteristics of the disease were also collected. Disease severity was assessed by patients’ self-reported Hurley stage since patients with HS are capable of self-assessing their Hurley stage with a good correlation with physician assessment [20
Disease activity was assessed by the Patients’ Global Assessment (PtGA) scale, consisting of five categories (inactive, very low, low, mild and severe) [21
], and intensity of symptoms by Numeric Rating Scales (NRS) [22
], where 0 is the lowest and 10 the highest intensity of the symptom. These scales show the subjective impact of the disease on patients, with equal or greater importance than objective scales [23
2.3. Statistical Analyses
Statistical analyses were performed using the IBM software Statistical Package for Social Science version 23.0 (SPSS Inc, Chicago, IL, USA). When data were missing from any of the variables of interest, patients were excluded from the study. When missing data were found in other variables, they were imputed. We used the Shapiro–Wilk test and histograms to assess if the variables were normally distributed. Descriptive statistics were used to explore the characteristics of the sample. Continuous variables were expressed as means and standard deviations (SD) or as medians and interquartile ranges (IR). Qualitative variables were expressed as absolute and relative frequencies.
We explored factors associated with fear of rejection/reaction of the sexual partner, perceived attractiveness, interference in relationships and interference in meeting new people by means of multivariate logistic regressions, including as variables age, sex, body mass index (BMI), educational status, age at HS onset, PtGA, NRS for pain, suppuration and unpleasant odor, self-reported Hurley, the number of areas affected by active lesions, the number of areas affected by scars, the presence of active lesions in the groin and genitals and, in the case of fear of rejection/the reaction of the sexual partner and perceived attractiveness, the presence of a stable relationship. Perceived attractiveness, interference in relationships and interference in meeting new people were binary codified (yes/no) for this analysis. Significance was set for all tests at two tails, p < 0.05.
3.1. Baseline Characteristics
Three hundred and ninety-three participants with HS completed the questionnaire, seven of them incompletely. The final sample therefore consisted of 386 participants, 79.27% (306/386) of which were women and 20.73% (80/386) men, resulting in a male–female ratio of 3.8:1. Their mean age was 37.81 (9.26) years old. Seventeen point six percent (68/386) of the patients were in Hurley stage I, 45.1% (174/386) in stage II and 37.3% (144/386) in stage III (Table 1
). We also collected 157 healthy controls, with no statistically significant differences from patients with HS in terms of sex (73.25% (115/157) were women and 26.75% (42/157) men, p
= 0.16) or age (mean age = 37.5 (12.03) years old, p
= 0.74). BMI was significantly lower in healthy controls (24.66 (4.47) kg, p
When comparing patients with HS with and without a stable partner, there were no differences in genital involvement (35.5% (103/290) vs. 40.6% (39/96), respectively, p = 0.37 for the difference), inguinal involvement (64.1% (186/290) vs. 60.4% (58/96), p = 0.51), PtGA (3.7 vs. 3.6, p = 0.62), number of active regions (2.5 (0.1) vs. 2.7 (0.2), p = 0.4), NRS for pain (6.7 (0.2) vs. 6.2 (0.3), p = 0.18) or Hurley stage (I: 16.2% (47/290), II: 44.1% (128/290), III: 39.7% (115/290) vs. I: 21.9% (21/96), II: 47.9% (46/96), III: 30.2% (29/96), p = 0.2). NRS for unpleasant odor was higher among patients with a stable partner (5.9 (0.2) vs. 4.8 (0.3), p < 0.01).
3.2. Perceived Difficulties in Sexual Activity
When participants were asked how HS affected their sexual relationships (Table 2
), almost half reported feeling fear of rejection or of the reaction of their sexual partner, while in the healthy control group, 37.6% (59/157) reported feeling fear of rejection at some point in their lives (p
< 0.05), mainly due to insecurity (27.39%, 43/157) and concerns about physical appearance (26.12%, 41/157). Factors significantly associated with this feeling in patients with HS were younger age (OR = 1.05 (95% CI: 1.02–1.08), p
< 0.001), the absence of a stable relationship (OR = 7.72 (4.24–14.06), p
< 0.0001) and the number of areas affected by scars (OR = 1.14 (1.02–1.28), p
< 0.05). We found trends toward statistical significance in self-reported Hurley (III vs. I, OR = 2.06 (0.97–4.38), p
= 0.059). Patients also felt that symptoms significantly affected their relationships, with pain being the most important symptom in women (65.4%, 200/306) and suppuration in men (56.3%, 45/80). Some participants also thought that treatment made sexual relations difficult (10.6%, 41/386).
Regarding the healthcare staff they would share their sexual problems with, a considerable percentage of participants with HS would not talk with anyone (37.6%, 145/386); women preferred a psychologist or a sexologist (41.2%, 126/306), and men felt most comfortable with their dermatologist (31.3%, 25/80) (Table 2
). This is the opposite to the healthy control group, where most would like to share their sexual problems (95.5%, 150/157, p
< 0.0001), mainly with a psychologist or a sexologist (82.2%, 129/157).
3.3. Sexual Orientation
Regarding sexual orientation, most participants were heterosexual (87.5% (70/80) of men and 94.8% (290/306) of women). Eleven point three percent (9/80) of men and 1.3% (4/306) of women were homosexual and 1.3% (1/80) of men and 3.9% (12/306) of women were bisexual. Sexual orientation was similar in the control group: 88.1% (37/42) of men and 89.57% (103/115) of women were heterosexual, 11.9% (5/42) of men and 3.48% (4/115) of women were homosexual, and 6.95% (8/115) of women were bisexual.
3.4. Perceived Attractiveness
Participants were also asked to rate their perceived sexual attractiveness (Table 3
). The differences with the control group were again significant (p
< 0.0001). It is noteworthy that 38.75% (31/80) of men and 45.75% (140/306) of women with HS considered themselves as “less attractive than average” or “not at all attractive”. Factors related to lower perceived attractiveness in patients with HS were NRS for unpleasant odor (OR = 1.14 (1.04–1.26), p
< 0.01), NRS for suppuration (OR = 1.14 (1.01–1.27), p
< 0.05) and the absence of a stable relationship (OR = 1.81 (1.1–2.96), p
< 0.05); the presence of active lesions in the groin showed trends toward statistical significance (OR = 1.62 (0.97–2.7), p
3.5. Sexuality in Patients with HS in a Stable Realtionship
Sixty-seven point five percent (54/80) of men and 77.1% (236/306) of women were in a stable relationship. Although it was not statistically significant, women reported more support (p = 0.22) and greater help with overcoming the fear of rejection (p = 0.09) than men, whereas help with lesion dressing in intimate areas was higher in men (p < 0.05).
It is significant that around 70% of participants, regardless of sex, state that HS negatively affects their relationship (Table 4
). PtGA was related to the perception of relationships being negatively affected (OR = 1.45 (1.01–2.08), p
< 0.05); the number of areas affected by active lesions showed trends toward statistical significance (OR = 1.3 (0.98–1.72), p
3.6. Sexuality in Single Patients with HS
Thirty-two point five percent (26/80) of men and 22.9% (70/306) of women were single. When patients were asked how they felt when they meet someone they could have a relationship or sexual relations with, women experienced greater fear of rejection (p = 0.11) than men, and the percentage of women who did not want to meet people because of HS was also higher (p = 0.22). Less than a quarter of participants felt excited when they met new people. On the other hand, in the control group, 77.5% (31/40) of the participants felt excited when meeting new people (p < 0.0001) and 22.5% (9/40) stated fear of rejection of the new partner for whatever reason (p < 0.0001).
A striking fact is that almost 95% of women and more than 80% of men stated that HS had a negative influence on their chances of having a relationship or sexual relations (Table 5
). We did not find any significant association of the explored factors with this feeling.
In conclusion, HS has a significant impact on important aspects of quality of life, such as sexuality and private life. Symptoms, and sometimes treatment, affect sexual activity. Many patients experience greater feelings of rejection and lower perceived attractiveness than healthy people. Body image alteration may play an important role, as it demonstrates the association between fear of rejection and the number of areas affected by scars. The absence of a stable relationship is also an important risk factor. However, there is also a noticeable impact on stable relationships, in part due to disease activity. A high percentage of single participants thought that the disease decreased their possibilities of having a sexual/sentimental partner, reflecting their sexual distress and lack of confidence. A considerable number of participants would like to share their sexual problems with health professionals, so patients should be asked about their sexual difficulties and specialized attention should be provided when necessary.