EP682 - Impact of Hirschsprung’s Disease on Sexual Function and Quality of Life

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Purpose/Background: Pelvic surgery is known to cause post-operative sexual dysfunction due to disruption of innervation during dissection. The sexual, urologic, and gynecologic outcomes of patients with congenital colorectal conditions like Hirschsprung’s Disease (HSCR), who underwent one or more pelvic surgeries in childhood, remain under-explored in the literature.

Methods/Interventions: Adult patients with HSCR treated at our institution were administered a validated survey specific to their sex assigned at birth: the International Index of Erectile Function (IIEF) for males, and both the Female Sexual Function Index (FSFI) and Sexual Quality of Life – Female (SQOL-F) for females. Validated survey scores were compiled based on guidelines for each individual metric. All patients regardless of gender also answered questions on sexual orientation, contraception, and their perspectives on how HSCR has impacted their life, with opportunities for free response. Descriptive statistics were used.

Results/Outcomes: Of 109 patients contacted, 23 participants provided complete responses and were included in the study, 14 males and 9 females. Male patients had a median age of 22.5 years (IQR 20.5 – 35.5), and females of 23.0 years (IQR 21.0 – 31.0). All patients were cisgender, and all but one male patient reported current or previous sexual activity.

Five female patients reporting current sexual activity responded to the FSFI, with a median FSFI score of 27.4 (IQR 27.0 – 27.4). None met the established cut-off of < 26.55 for likely sexual dysfunction, however the median pain domain score was 1.6 (IQR 1.6 – 3.6), indicating dyspareunia is common in our cohort. All female patients responded to the SQOL-F, with a median score of 69.0 (IQR 66.0 – 71.0). In the original validation study, those with known sexual dysfunction had a mean score of 59.0, and those without of 90.1. Other gynecologic characteristics are summarized in Table 1. Of the 13 male patients who had been sexually active, the median total IIEF score was 56.5 (IQR 24.0 – 67.0). Median erectile function domain score was 23.0 (IQR 14.0 – 29.0), with an established cut-off of < 25 indicating likely erectile dysfunction. Most (N=11, 78.6%) reported their penis is hard enough for penetration when they do get an erection.

Regarding their Hirschsprung’s Disease, 42.9% of male patients and 33.3% of female patients reported they felt HSCR has affected their sexual life. One patient cited trauma related to his medical care for Hirschsprung’s Disease. Other patients reported embarrassment from abdominal scarring, presence of an ostomy, or incontinence. Most patients, 92.9% of males and 77.8% of females, reported they had never discussed sexual issues with their doctor.

Conclusion/Discussion: Scoring tools like the IIEF and FSFI are limited in their ability to assess the full scope of an individual’s sexual experience and satisfaction. Our results suggest that even patients with “normal” function as assessed by a scoring tool may face challenges with intimacy and experience decreased sexual quality of life. Colorectal surgeons are uniquely positioned to screen patients with complex pelvic surgery such as HSCR for sexual dysfunction and refer to the appropriate specialist to improve their overall quality of life.