Abstract
Introduction
Hidradenitis suppurativa (HS) can significantly impact patients' relationships.
Methods
Using an anonymous electronic survey, we aimed to determine what aspects of sexual relationships are affected by HS discomfort and patients' reluctance to discuss HS with their partner.
Results
Among the 873 participants, 60.9% reported that some aspect of their relationship was affected by HS discomfort, with the greatest being their sexual encounters with spouse (49.1%). Furthermore, 43.0% (320) of participants reported feeling reluctant to discuss HS with their spouse/significant other, with the more common reason being fear of partner seeing boils and scars (84.7%). Multiple aspects of relationships can be affected by HS such as sexual encounters, overall relationship, and finding a relationship. Additionally, several communication barriers are present, such as fear of partner seeing boils and scars, partner thinking they had an infection such as a sexually transmitted disease, and fear of bloody or malodorous drainage, among others. The presence of anogenital pain, Hurley stage, gender, and age significantly affect these findings.
Conclusion
Addressing HS-related relationship disturbances should be included in HS management.
Keywords: Hidradenitis suppurativa, Sexual encounters, Sex, Relationship, Partner, Spouse
Introduction
Hidradenitis suppurativa (HS) is a chronic dermatosis characterized by painful abscesses, sinus tracts, and scarring typically in intertriginous regions. HS has been associated with a decrease in quality of life (QoL) and sexual health [1]. There is limited literature on intimate relationships affected by HS and challenges present when discussing HS in relationships. Herein, we aimed to determine what aspects of sexual relationships are affected by HS discomfort and patients' reluctance to discuss HS with their partner.
Methods
An anonymous electronic survey was distributed in North American HS specialty clinics and to Facebook HS support groups between December 2017 and June 2019. Participants answered a series of demographic questions and self-reported their Hurley stage based on written descriptors. In the survey, Hurley stage 1 was defined as “single or multiple boil formation without tunnel formation and scarring,” Hurley stage 2 was defined as “recurrent single or multiple boils, widely separated, with limited tunnel formation and scarring,” and Hurley stage 3 was defined as “diffuse or widespread involvement of multiple interconnected tunnels and boils.” Participants were then asked to select all that applied to what aspects of your life are affected by your discomfort (pain or itch) and why they felt reluctant to discuss HS with their spouse or significant other. Statistical analyses were performed using JMP® (version 14.0, SAS Institute Inc., Cary, NC, USA). Categorical data were evaluated with Pearson's χ2 test.
Results
There were 873 participants (90.0% female) with a mean age of 35.7, and a mean BMI of 35.0. The majority of the participants reported being white (70.6%), followed by Hispanic (9.7%), and African American (9.2%). 51.2% of participants were married, 38.9% were never married, and 9.9% were divorced. Most of the participants reported being Hurley-2 (51.0%), followed by Hurley-3 (35.9%) and Hurley-1 (13.0%) (Table 1).
Table 1.
Patient demographics and disease severity
| Demographics | Overall mean (SD) | Participants reporting relationship disturbance, mean (SD) | Participants reporting no relationship disturbance, mean (SD) | p value |
|---|---|---|---|---|
| Age, years (n = 873) | 35.7 (10.75) | 36.1 (10.3) | 35.1 (11.4) | 0.91 |
| BMI (n = 823) | 35.0 (9.11) | 34.9 (9.1) | 35.1 (9.2) | 0.76 |
| Income (n = 820) | ||||
| Annual household income | 69,107 (62,612) | 67,895 (58,832) | 71,019 (68,207) | 0.5 |
| Annual income per household member | 27,247 (31,316) | 24,341 (30,212) | 28,455 (32,671) | 0.5 |
| Household members, n | 2.9 (1.4) | 3.1 (1.3) | 2.7 (1.3) | 0.7 |
| Gender, n (%) | ||||
| Male | 85 (10.0) | 49 (57.7) | 36 (42.4) | 0.68 |
| Female | 784 (90.0) | 481 (61.3) | 303 (38.7) | |
| Race, n (%) | ||||
| White | 617 (70.6) | 387 (63.6) | 230 (37.3) | |
| Hispanic | 85 (9.7) | 52 (61.2) | 33 (38.8) | 0.1 |
| African American | 81 (9.2) | 39 (48.2) | 42 (51.8) | |
| Other | 90 (10.5) | 52 (57.7) | 38 (43.3) | |
| Marital status, n (%) | ||||
| Married | 447 (51.2) | 278 (52.2) | 169 (49.7) | |
| Divorced | 86 (9.9) | 50 (9.4) | 36 (11.0) | 0.71 |
| Never married | 340 (38.9) | 205 (38.5) | 135 (39.7) | |
| Living situation, n (%) | ||||
| Lives with spouse/partner | 515 (59.6) | 318 (61.0) | 197 (57.9) | |
| Lives with other family | 213 (24.7) | 125 (23.4) | 88 (26.0) | 0.64 |
| Lives alone | 136 (15.7) | 81 (15.5) | 55 (16.2) | |
| Employment status, n (%) | ||||
| Employed | 540 (62.5) | 354 (67.4) | 225 (66.0) | |
| Retired | 35 (0.4) | 13 (2.4) | 22 (6.5) | 0.94 |
| Unemployed | 389 (33.4) | 165 (30.2) | 186 (27.5) | |
| Disease characteristics | ||||
| Hurley stage, n (%) | ||||
| 1 | 106 (13.0) | 61 (11.5) | 45 (15.9) | |
| 2 | 415 (51.0) | 256 (48.3) | 159 (56.2) | 0.0017 |
| 3 | 292 (35.9) | 213 (40.2) | 79 (27.9) | |
| Presence of HS skin pain, n (%) | ||||
| Underarms | 433 (49.6) | 315 (59.2) | 118 (19.1) | 0.0001 |
| Groin* | 447 (51.2) | 354 (66.6) | 93 (15.1) | 0.0001 |
| Buttocks* | 365 (41.8) | 297 (55.8) | 68 (11.0) | 0.0001 |
| Genitals* | 292 (33.4) | 246 (46.2) | 46 (7.4) | 0.0001 |
| Between thighs | 373 (42.7) | 300 (56.4) | 73 (11.8) | 0.0001 |
| Behind thighs | 114 (13.1) | 96 (18.1) | 18 (2.3) | 0.0001 |
| Below breasts | 220 (25.2) | 181 (34.0) | 39 (6.3) | 0.0001 |
| Neck | 55 (0.6) | 45 (8.5) | 10 (1.62) | 0.0001 |
| Abdominal folds | 138 (15.8) | 118 (22.2) | 20 (3.2) | 0.0001 |
| Behind ears | 42 (0.5) | 35 (5.5) | 7 (1.1) | 0.0001 |
| Aspects of relationships affected by HS discomfort, n (%) | 532 (60.9) | |||
| Sexual encounters with spouse | 429 (49.1) | |||
| Relationship with spouse/partner | 301 (34.5) | |||
| Ability to find relationship | 176 (20.1) | |||
| Reluctant to discuss HS with spouse/significant other, n (%) | 320 (43.0) | |||
| Fear of partner seeing boils and scars | 271 (84.7) | 224 (42.0) | 47 (13.8) | 0.0001 |
| Fear of partner thinking they have an infection such as an STI | 191 (59.7) | 161 (84.3) | 30 (15.7) | 0.0001 |
| Fear of drainage# | 185 (57.8) | 159 (86.0) | 26 (14.0) | 0.0001 |
| Fear of pain during intercourse | 110 (34.4) | 100 (90.9) | 10 (9.1) | 0.0001 |
| Fear of sexual relationships worsening HS | 91 (28.4) | 78 (85.7) | 13 (14.3) | 0.0001 |
| Other | 43 (13.4) | 38 (88.3) | 5 (11.7) | 0.0001 |
BMI, body mass index. Bold values are statistically significant.
Anogenital region.
Bloody or malodorous drainage.
Aspects of Relationships Affected by Discomfort
60.9% (532) of participants reported some aspect of their relationship was affected by HS discomfort, including their sexual encounters with spouse (49.1% [429]), relationship with spouse/partner (34.5% [301]), and ability to find a relationship (20.1% [176]). Hurley-3 participants were significantly more likely to report that HS discomfort has affected their relationship with spouse/partner (73.0 vs. 60.1%; p = 0.0003), their sexual encounters with spouse (61.6 vs. 47.4%; p < 0.0001), and their ability to find a relationship (25.3 vs. 19.2%; p = 0.04) than Hurley-1 and −2 participants. Patients with pain from HS in the anogenital area were significantly more likely to report that HS discomfort affected their ability to find a relationship (25.4 vs. 5.2%; p < 0.0001), their relationship with their spouse/partner (43.7 vs. 8.7%; p < 0.0001), and their sexual encounters with spouse (64.4 vs. 10.3%; p < 0.0001) (shown in Fig. 1). Females were significantly more likely to report an effect on their relationship with spouse/partner (35.8 vs. 22.4%; p = 0.04) and on their sexual encounters with spouse (50.1 vs. 40.0%; p = 0.02) due to HS discomfort than males. Participants <30 years old were significantly more likely to report HS discomfort affected their ability to find a relationship than those ≥30 years old (54.5 vs. 45.5%; p = 0.003). Participants ≥30 years old were significantly more likely to report that HS discomfort affected their relationship with spouse/partner (38.5 vs. 27.2%; p = 0.0007) and their sexual encounters with spouse (61.6 vs. 47.4%; p < 0.0001) than those <30 years old (Table 2).
Fig. 1.
Impact of anogenital pain on patient relationships.
Table 2.
Aspects of relationships affected by discomfort and reluctance to discuss HS
| Gender (female vs. male), % | Age (≥30 vs. <30 years old), % | Hurley-3 versus Hurley-1 and 2, % | Anogenital involvement of HS versus not, % | |
|---|---|---|---|---|
| Aspects of relationships affected by discomfort | ||||
| Sexual encounters with spouse | 50.1 versus 40.0 p = 0.02 | 61.6 versus 47.4 p = 0.0001 | 61.6 versus 47.4 p = 0.0001 | 64.4 versus 10.3 p = 0.0001 |
| Relationship with spouse/partner | 35.8 versus 22.4 p = 0.04 | 38.5 versus 27.2 p = 0.0007 | 73.0 versus 60.1 p = 0.0003 | 43.7 versus 8.7 p = 0.0001 |
| Ability to find a relationship | 19.4 versus 27.1 p = 0.23 | 45.5 versus 54.5 p = 0.003 | 25.3 versus 19.2 p = 0.04 | 25.4 versus 5.2 p = 0.0001 |
| Reluctance to discuss HS | ||||
| Reluctance to discuss HS | 44.1 versus 34.2 p = 0.34 | 45.5 versus 41.6 p = 0.002 | 44.9 versus 41.9 p = 0.71 | 43.3 versus 41.7 p = 0.64 |
| Fear of partner seeing boils and scars | 86.4 versus 68.0 p = 0.03 | 82.3 versus 88.9 p = 0.11 | 87.4 versus 83.4 p = 0.34 | 86.2 versus 79.5 p = 0.15 |
| Fear of bloody or malodorous drainage | 56.1 versus 76.0 p = 0.93 | 59.6 versus 54.7 p = 0.73 | 68.9 versus 51.3 p = 0.002 | 64.4 versus 35.6 p = 0.0001 |
| Fear of partner thinking they have an infection such as an STI | 60.5 versus 48.0 p = 0.33 | 52.2 versus 72.7 p = 0.0003 | 68.9 versus 54.3 p = 0.01 | 61.1 versus 54.8 p = 0.33 |
| Fear of pain during intercourse | 34.0 versus 40.0 p = 0.72 | 32.0 versus 38.5 p = 0.24 | 42.2 versus 29.7 p = 0.02 | 38.4 versus 20.6 p = 0.004 |
| Fear of sexual relationships worsening HS | 28.9 versus 24.0 p = 0.71 | 27.1 versus 30.7 p = 0.48 | 30.3 versus 27.1 p = 0.55 | 30.4 versus 21.9 p = 0.16 |
HS, hidradenitis suppurativa; STI, sexually transmitted infection. Bold values are statistically significant.
Reluctance to Discuss HS
Among the 43.0% (320) of participants that reported feeling reluctant to discuss HS with their spouse/significant other, 84.7% (271) reported it was due to fear of potentially revealing their boils and scars to their partner. Other reasons included: fear of partner thinking they had an infection such as a sexually transmitted disease (STI) (59.7% [191]), fear of potentially having to reveal their bloody or malodorous drainage to their partner (57.8% [185]), fear of pain during intercourse (34.4% [110]), fear of sexual relationships worsening HS (28.4% [91]), and 13.4% (43) reported it was due to other reasons.
Hurley-3 participants were significantly more likely to report being reluctant to discuss HS with a spouse/significant other due to fear of bloody or malodorous drainage (68.9 vs. 51.3%; p = 0.002), fear of their partner thinking they have an infection such as an STI (68.9 vs. 54.3%; p = 0.01), and fear of pain during intercourse (42.2 vs. 29.7%; p = 0.02) than Hurley-1 and −2. Patients with pain from anogenital involvement were more likely to report reluctancy to discuss HS with a spouse/significant other due to fear of pain during intercourse (38.4 vs. 20.6%; p = 0.004) and fear of bloody or malodorous drainage (64.4 vs. 35.6%; p < 0.0001). Females participants were significantly more likely to be reluctant to discuss HS with a spouse/significant other due to fear of partner seeing boils and scars than males (86.4 vs. 68.0%; p = 0.03). Participants under 30 years old were significantly more likely to be reluctant to discuss HS with a spouse/significant other because they feared the partner would think they have an infection such as an STI than those that were ≥30 (72.7 vs. 52.2%; p = 0.0003). Participants that were ≥30 years old were significantly more likely to be reluctant to discuss HS with a spouse/significant (45.5% vs. 41.6%; p = 0.002) than those that were <30 years old.
Discussion
Our study demonstrates that a significant proportion of people who have HS may experience disturbances in relationships and sexual function. More than 40% of participants are reluctant to discuss HS with their spouse/partner most commonly due to fear of having to reveal their lesions to their partner and fear of partner thinking they have an STI. As highlighted in Table 2, anogenital pain due to HS, Hurley stage, gender, and age significantly influenced how HS discomfort affected participants' relationships and their reasons for being reluctant to discuss HS.
Prior studies have also reported that female gender and genital/groin involvement are significantly associated with sexual distress [2]. Furthermore, disease severity and anogenital involvement are associated with an overall impairment in QoL [1]. Sexual disturbances may also be related to mental health comorbidities commonly found in HS such as depression and anxiety. Prior studies have similarly found that compared to healthy controls, HS patients feel less acceptable as a sexual partner, have a less enjoyable sexual life, reduced sexual health, and diminished QoL [1, 3]. Our current study builds upon these findings by highlighting that in addition to sexual relationships, HS discomfort also affects patients' general relationship with spouse/partner and affects the ability to find new relationships. Furthermore, sexual impairment is not limited to patients with HS, as their partners also report a diminished QoL [4]. Several studies have suggested healthcare providers address HS patients' sexual health concerns [1, 2, 5, 6, 7, 8]. However, there is a paucity of literature addressing the importance of patient-partner communication on relationships and sexual health improvement. Our study further identifies specific reasons that patients may be reluctant towards these conversations to help guide physicians on appropriate patient education.
In our experience and observations, conversations about HS with a spouse/partner are often challenging due to the stigma and misinformation around the disease. Spending more time asking questions, counseling, and educating patients on sexual health and relationships can reduce these challenges. Specifically, educating patients and partners that HS is not an STI is important. Additionally, finding the appropriate treatment plan to mitigate disfigurement, and discussing ways to minimize pain and discharge during sexual encounters is beneficial. Ultimately, installing patient confidence through education can help empower them to have open communication with their partner/spouse about HS and improve their relationship. Limitations of this study may include the predominantly female participants that may not fully represent the sex distribution of HS, self-reported Hurley stages, voluntary response bias from individuals who have experienced sexual impairments, and the responses from HS social media support groups may not reflect the entire HS population.
Conclusion
Addressing HS patient concerns about sexual health, relationships, and healthy communication strategies is a necessary part of HS management. Referrals for individual and/or couple counseling may be warranted. Future studies are needed to: (1) identify strategies targeting the communication challenges, education, and stigma around HS; (2) design treatment plans and measure outcomes; and (3) strategically implement findings into clinical settings.
Statement of Ethics
This study was deemed exempt by the University of Arizona Institutional Review Board. Informed consent was not directly obtained but inferred by completion of the questionnaire/survey participation.
Conflict of Interest Statement
V.Y.S. is on the board of directors for the Hidradenitis Suppurativa Foundation (HSF), is a stock shareholder of Learn Health, and has served as an advisory board member, investigator, speaker, and/or received research funding from Sanofi Genzyme, Regeneron, AbbVie, Eli Lilly, Novartis, SUN Pharma, LEO Pharma, Pfizer, Incyte, Boehringer Ingelheim, Aristea Therapeutics, Menlo Therapeutics, Dermira, Burt's Bees, Galderma, Kiniksa, UCB, Target-PharmaSolutions, Altus Lab/cQuell, MYOR, Polyfins Technology, GpSkin, Skin Actives Scientific, and the National Eczema Association. J.L.H. is on the board of directors for the Hidradenitis Suppurativa Foundation (HSF) and is a consultant for Novartis and speaker for AbbVie.
Funding Sources
Not applicable.
Author Contributions
All authors meet the ICMJE criteria for authorship.
Alyssa M. Thompson: Analysis/interpretation of data, drafting the work, final approval for publication, and accountable for work.
Jonathan W. Rick: Analysis/interpretation of data, drafting the work, final approval for publication, and accountable for work.
Devea R. De: Analysis/interpretation of data, drafting the work, final approval for publication, and accountable for work.
Jennifer M. Fernandez: Conception of the work/acquisition of data, critical revisions, final approval for publication, and accountable for work.
Melody Maarouf: Conception of the work, critical revisions, final approval for publication, and accountable for work.
Justine R. Seivright: Analysis/interpretation of data, revising intellectual content, final approval for publication, and accountable for work.
Jennifer L. Hsiao: Conception of the work/acquisition of data/interpretation of data, critical revisions, final approval for publication, and accountable for work.
Vivian Y. Shi: Conception of the work/acquisition of data/interpretation of data, critical revisions, final approval for publication, and accountable for work.
Data Availability Statement
The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.
Funding Statement
Not applicable.
References
- 1.Janse IC, Deckers IE, van der Maten AD, Evers AWM, Boer J, van der Zee HH, et al. Sexual health and quality of life are impaired in hidradenitis suppurativa: a multicentre cross-sectional study. Br J Dermatol. 2017;176:1042–1047. doi: 10.1111/bjd.14975. [DOI] [PubMed] [Google Scholar]
- 2.Cuenca-Barrales C, Ruiz-Villaverde R, Molina-Leyva A. Sexual distress in patients with hidradenitis suppurativa: a cross-sectional study. J Clin Med. 2019;8:532. doi: 10.3390/jcm8040532. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Andersen PL, Nielsen RM, Sigsgaard V, Jemec GBE, Riis PT. Body image quality of life in patients with hidradenitis suppurativa compared with other dermatological disorders. Acta Derm Venereol. 2020;100:adv00107. doi: 10.2340/00015555-3464. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Włodarek K, Głowaczewska A, Matusiak Ł, Szepietowski JC. Psychosocial burden of hidradenitis suppurativa patients' partners. J Eur Acad Dermatol Venereol. 2020;34((8)):1822–1827. doi: 10.1111/jdv.16255. [DOI] [PubMed] [Google Scholar]
- 5.Alavi A, Farzanfar D, Rogalska T, Lowes MA, Chavoshi S. Quality of life and sexual health in patients with hidradenitis suppurativa. Int J Womens Dermatol. 2018;4:74–79. doi: 10.1016/j.ijwd.2017.10.007. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Kurek A, Peters EM, Chanwangpong A, Sabat R, Sterry W, Schneider-Burrus S. Profound disturbances of sexual health in patients with acne inversa. J Am Acad Dermatol. 2012;67:422–8.e1. doi: 10.1016/j.jaad.2011.10.024. [DOI] [PubMed] [Google Scholar]
- 7.Sampogna F, Abeni D, Gieler U, Tomas-Aragones L, Lien L, Titeca G, et al. Impairment of sexual life in 3,485 dermatological outpatients from a multicentre study in 13 European countries. Acta Derm Venereol. 2017;97:478–482. doi: 10.2340/00015555-2561. [DOI] [PubMed] [Google Scholar]
- 8.Yee D, Collier EK, Atluri S, Jaros J, Shi VY, Hsiao JL. Gender differences in sexual health impairment in hidradenitis suppurativa: a systematic review. Int J Womens Dermatol. 2020;7:259–264. doi: 10.1016/j.ijwd.2020.10.010. [DOI] [PMC free article] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.