Patient Perspectives on Hidradenitis Suppurativa and Infertility: A Survey Study.

Demographics of the 312 respondents are summarized in Table 1 . Mean age was 35.7 (SD: 7.4, range: 18–50), and 66.6% (207/311) had been pregnant before. The average number of pregnancies, live births, and miscarriages was 2.9 (SD: 2, range: 1–15), 1.8 (SD: 1.4, range: 0–9), and 0.8 (SD: 1.3, range: 0–11), respectively. Of the 248 respondents who had ever tried to conceive, 103 (41.5%) tried unsuccessfully for 1 year or more; these respondents were more likely to report having a diagnosis of polycystic ovarian syndrome (PCOS) (43.7% vs. 18.6%, p < 0.0001) and depression (59.2% vs. 41.4%, p = 0.01) compared to those who successfully became pregnant after trying for less than 1 year. Amongst the 61 respondents who experienced infertility but had not used fertility treatments, barriers to pursuing fertility treatments included: concerns about financial support/insurance coverage (47.5%), fertility treatments worsening HS (21.3%), employment (11.5%), difficulty finding a provider to help with fertility treatment (11.5%), reasons related to partner (11.5%), HS making fertility treatments less effective (9.8%), and social support (8.2%). Respondents’ demographic characteristics SD, standard deviation; HS, hidradenitis suppurativa; N, number. a Other: pediatrician ( n = 1), infectious disease doctor ( n = 1), oncologist/plastic surgeon ( n = 1), unspecified ( n = 5). b Uterine issues: endometriosis ( n = 21), uterine fibroids ( n = 15), polyps ( n = 3), adenomyosis ( n = 2), urgent frequent incontinence ( n = 1). c Pelvic issues: PID ( n = 4), aggressive HPV ( n = 1), endometriosis/adenomyosis ( n = 1), “inflammation” ( n = 1), schwannoma tumor ( n = 1), endometriosis ( n = 1). d Sexual dysfunction issues: low libido ( n = 3), vaginismus ( n = 1), sexual dysfunction ( n = 1), vulvodynia ( n = 1), unspecified ( n = 1). e Ovarian issues: early menopause ( n = 1), fibroids and cysts ( n = 1), diminished ovarian reserve ( n = 1), endometriosis ( n = 1), ovarian cancer ( n = 1). Use of fertility treatments was reported by 18.5% (46/248) of respondents who had ever tried to conceive. Amongst the 103 respondents who had tried to conceive unsuccessfully for 1 year or more, 42 (40.8%) had ever tried fertility treatments. Fertility treatments included oral medications (82.6%, 38/46) followed by injectable medications (39.1%, 18/46), in vitro fertilization or frozen embryo transfer (23.9%, 11/46), artificial insemination (19.6%, 9/46), and surrogate pregnancy (2.2%, 1/46). Oral medications used most often included clomiphene (81.6%, 31/38) and letrozole (28.9%, 11/38). The majority of respondents reported either no change (73.7%, 28/38 or 77.8%, 14/18) or improvement (15.8%, 6/38 or 11.1%, 2/18) in HS symptoms with oral or injectable fertility medications; a minority (10.5%, 4/38 or 11.1%, 2/18) endorsed worsening of HS. Over three-fourths of respondents (78.3%, 36/46) who used fertility treatments had tried to become pregnant for 1 year or more before pursuing these treatments. Of the 59 respondents who had never tried to become pregnant, 39% reported that their HS impacted this decision and they were more likely to be non-White (86.1% vs. 56.5%, p = 0.03), current smokers (52.1% vs. 22.2%, p = 0.04), and diabetic (100% vs. 0%, p = 0.01). Respondents’ perspectives on HS and fertility are presented in Figure 1 . Over 40% of respondents endorsed that HS has made their family planning more difficult (45.4%, 123/271) and that having HS negatively affects their fertility (43.6%, 119/273). Of the 128 respondents who had not taken fertility-enhancing medications, 24.2% believed that fertility treatments would worsen HS while only 2.3% believed they would improve HS. Respondents’ perspectives on HS and fertility. Top HS treatments that respondents were concerned may affect fertility included oral antibiotics (44.9%), hormonal medications (38.8%), and biologics (35.9%). These were followed by topical antibiotics (22.4%), over-the-counter pain medications (18.9%), prescription pain medications (18.9%), oral/intravenous steroids (16%), oral retinoids (15.1%), intravenous antibiotics (12.8%), intralesional steroids (11.5%), and methotrexate (8.7%). Nearly one-third (33%) of participants expressed no concerns about any treatment.

Our study found that 41.5% of respondents who ever tried to conceive reported having tried unsuccessfully for 1 year or more, and of these respondents the majority had not ever used fertility treatments. Respondents were concerned about the impact of fertility treatments on HS disease course, but most women who used fertility medications did not experience worsening of symptoms. Nearly 40% of females who did not try to conceive indicated that HS had influenced this decision. Respondents also expressed concern regarding the impact of HS therapies on fertility. The reported infertility rate amongst our study respondents was markedly higher than the infertility rate of 6–8% in the general US population [ 4 ]. Participants who experienced infertility were more likely to have comorbid PCOS, which may partially account for increased infertility rates since PCOS has a known association with infertility [ 5 ]. The prevalence of PCOS among patients with HS has been reported to be higher than the general population (9% vs. 2.9%, p < 0.0001) [ 6 ]. In addition, chronic inflammation in HS may suppress the hypothalamic-pituitary reproductive axis, which can lead to anovulation [ 7 ]. Moreover, patients with HS are at increased risk of sexual dysfunction due to appearance of HS lesions, pain, drainage, fatigue, and embarrassment [ 8 , 9 ]; as a result, decreased rates of sexual activity may also have contributed to the high rate of infertility within the study population. Though obesity is a known risk factor for infertility [ 10 ], there was no difference in rates of obesity between those respondents who reported infertility versus those who did not. Our study supports the findings of an Israeli retrospective study of 4,191 HS patients that reported high rates of infertility in females with HS compared to the general population (odds ratio: 3.10, p < 0.001) [ 11 ]. Increased infertility rates have also been observed in patients with other chronic inflammatory conditions such as atopic dermatitis and rheumatoid arthritis [ 12 , 13 ]. The majority of respondents did not experience worsening of symptoms with oral or injectable fertility treatments; counseling patients regarding this finding may ease some of the anxiety surrounding these medications. Worsening of acne with clomiphene has been reported [ 14 ], which may be a reason why some patients are concerned about the effects of these medications on HS symptoms. Of the respondents who never attempted to conceive, nearly 40% stated that HS had impacted this decision. HS can also negatively influence sexual encounters due to the embarrassment associated with having malodorous lesions and pain related to sexual activity [ 15 , 16 ]. By engaging in open dialogue with patients, particularly with minority patients, about the impact of HS on reproductive health, providers may be able to mitigate potential barriers to intimate relationships and family planning. Importantly, an earlier HS survey study found that topic of sexual health is best discussed with great sensitivity, only after establishing rapport [ 17 ]. Since 67.3% of respondents expressed concerns about the effects of at least one HS treatment on fertility, addressing these potential apprehensions may also increase HS medication adherence. Study limitations include recall bias, self-reported Hurley stage, and predominantly White respondents, which limits the generalizability of the findings. Moreover, 38.8% of respondents had a bachelor’s degree or higher which may have skewed the results. Overall, females with HS have concerns regarding their reproductive health in the context of their skin condition. Dermatologists can play a vital role in educating and counseling patients during family planning discussions and likely improve HS treatment adherence in those who are concerned about the impact of HS treatments on fertility.

Dermatologists should be aware that hidradenitis suppurativa patients have concerns regarding fertility and fertility treatments.

Hidradenitis suppurativa (HS) is a chronic, debilitating skin condition that presents with recurrent abscesses, nodules, sinus tracts, and scarring [ 1 ]. Although HS disproportionately affects women of childbearing age in the USA and HS appears to be a risk factor for adverse pregnancy outcomes [ 2 , 3 ], data regarding the impact of HS on fertility are sparse. Moreover, there is a paucity of literature on how fertility treatments may affect HS symptoms. In this study, we elicited the perspectives of female patients to better understand the concerns regarding the impact of HS and HS treatments on reproductive health, as well as the impact of fertility treatments on HS disease course.

J.L.H. is on the Board of Directors for the Hidradenitis Suppurativa Foundation, has served as a consultant for Boehringer Ingelheim, Novartis, and UCB, and has served as a consultant and speaker for AbbVie. 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, Alumis, Aristea Therapeutics, Menlo Therapeutics, Dermira, Burt’s Bees, Galderma, Kiniksa, UCB, WebMD, TARGET-Pharmasolutions, Altus Laboratory, MYOR, Polyfin, GpSkin, and Skin Actives Scientific. A. Garg is an advisor for AbbVie, Aclaris Therapeutics, Anaptys Bio, Aristea Therapeutics, Boehringer Ingelheim, Bristol Myers Squibb, Incyte, InflaRx, Insmed, Janssen, Novartis, Pfizer, UCB, Union Therapeutics, and Viela Biosciences, and receives honoraria; A. Garg receives research grants from Abbvie, UCB, and National Psoriasis Foundation and is co-copyright holder of the HS-IGA and HiSQOL instruments. There was no financial transaction for the preparation of this manuscript. All other authors report no conflicts of interest.

We would like to thank the members of Hope for HS, HS Connect, and HS Warriors for participating in our survey.

This article has no funding source.

An anonymous survey was distributed with permission through online HS support groups between June and July 2022. Respondents between the ages of 18 and 50 who were assigned female sex at birth were eligible to participate. Survey questions addressed: demographics, HS disease characteristics, pregnancy history, fertility treatment history, perspectives regarding the impact of HS or HS treatments on fertility and the impact of fertility treatments on HS. Comparative statistics were performed using t tests/χ 2 tests to assess associations between demographics and survey responses. A p value of <0.05 was considered significant. This study is IRB exempt at the University of Southern California.

This study was approved under the exempt category by the institutional review board at the University of Southern California. The need for informed consent was waived by the Institutional Review Board at the University of Southern California.

R.M. led the writing, reviewing, and editing of the manuscript. T.S., S.P., D.R.D., A. Gierbolini, A.A., A. Garg, R.G.M., and V.Y.S. contributed toward conceptualization, reviewing, and editing of the manuscript. J.L.H. led the conceptualization and administration of this project and also contributed toward reviewing and editing the manuscript.