Summary
Objective
Data on sexual function of men with spina bifida (SB) is limited. We aimed to assess
sexual activity and erectile dysfunction (ED) in a large international sample of men
with SB.
Methods
Men with SB (≥18yo) were recruited in an international online survey via clinics and
social media. We collected data on demographics, ambulation (Hoffer classification),
penile rigidity (Erection Hardness Score), sexual activity and ED (International Index
of Erectile Function). Non-parametric tests were used.
Results
A total of 162 men (median age 35, 62% shunted, 38% community ambulators) reported
sexual desire similar to the general population (p = 0.82), but 55% were dissatisfied
with their sex life (Summary Table). Overall, 36% reported full penile rigidity with erections, more commonly with better
ambulation (p = 0.01), 69% had ever experienced orgasm and 84% ejaculated. In 44 men
(27%) attempting sexual intercourse in the last 4 weeks, 59% had ED (11% severe, 7%
moderate, 14% mild-moderate, 27% mild). In this group, 91% of men reporting less than
full penile rigidity had ED, compared to 30% with full penile rigidity (p = 0.001).
Overall, partnered non-genital contact in the last 3 months was reported by 56%, solo
masturbation: 62%, partnered intercourse: 48% (31% vaginal). Of 54 men who used phosphodiesterase
type 5 inhibitors (PDE5I), 80% reported improved erections, 56% improved intercourse.
Overall, 40% reported non-genital erogenous zones as most pleasurable, especially
with poorer ambulation (p = 0.002, chest/nipples: 73%).
Comment
Strengths of this study include anonymous, voluntary, online participation maximizing
participation of a heterogenous, international population. Whenever available, we
compared findings to published values for the general population. Since romantic and
sexual activity is a complex intersection of interest, opportunity and ability, a
more comprehensive assessment was beyond the study's scope. Future work will focus
on the interplay with issues like incontinence.
Conclusions
Summary TableSexual activity and function.
| Outcome | Nonambulators (n = 81) | Household ambulators (n = 19) | Community ambulators (n = 33) | Normal ambulators (n = 29) | p-value | Overall (n = 162) |
|---|---|---|---|---|---|---|
| Sexual desire (median, IRQ) (IIEF items 11 and 12) | 7 (6–9) | 8 (5–9) | 7 (6–9) | 7 (6–8) | 0.97 | 7 (6–9) |
| Overall sex life satisfaction, regardless of sexual activity in the last 4 weeks | ||||||
| Very satisfied | 4 (4.9%) | 2 (10.5%) | 4 (12.1%) | 5 (17.2%) | 0.06 | 15 (9.3%) |
| Somewhat satisfied | 9 (11.1%) | 1 (5.3%) | 9 (27.3%) | 3 (10.5%) | 22 (13.6%) | |
| Equally satisfied and dissatisfied | 14 (17.3%) | 2 (10.5%) | 3 (9.1%) | 5 (17.2%) | 24 (14.8%) | |
| Somewhat dissatisfied | 14 (17.3%) | 7 (36.8%) | 5 (15.2%) | 8 (27.6%) | 34 (21.0%) | |
| Very dissatisfied | 35 (43.2%) | 5 (26.3%) | 9 (27.3%) | 6 (20.7%) | 55 (34.0%) | |
| Missing | 5 (6.2%) | 2 (10.5) | 3 (9.1%) | 2 (6.9%) | 12 (7.4%) | |
| Erection hardness | ||||||
| Does not get bigger | 13 (16.1%) | 1 (5.3%) | 0 (0.0%) | 2 (6.9%) | 0.003 | 16 (9.9%) |
| Bigger but not hard | 3 (3.7%) | 1 (5.3%) | 0 (0.0%) | 0 (0.0%) | 4 (2.5%) | |
| Hard but not hard enough for penetration | 19 (23.5%) | 1 (5.3%) | 4 (12.1%) | 3 (10.3%) | 27 (16.7%) | |
| Hard enough for penetration but not completely hard | 22 (27.2%) | 7 (36.8%) | 10 (30.5%) | 8 (27.6%) | 47 (29.0%) | |
| Completely hard and fully rigid | 17 (21.0%) | 9 (47.4%) | 17 (51.5%) | 15 (51.7%) | 58 (35.8%) | |
| Missing | 7 (8.6%) | 0 (0.0%) | 2 (6.1%) | 1 (3.5%) | 10 (6.2%) | |
| Romantic and sexual activity in the past 3 months | ||||||
| Any non-genital partnered contact | 36 (44.4%) | 10 (52.5) | 25 (75.8%) | 20 (69.0%) | 0.01 | 91 (56.2%) |
| Cuddled | 30 (37.0%) | 9 (47.4%) | 24 (72.7%) | 16 (55.2%) | 0.01 | 79 (48.8%) |
| Kissed | 33 (40.7%) | 8 (42.1%) | 24 (72.7%) | 16 (55.2%) | 0.02 | 81 (50.0%) |
| Held hands | 35 (43.2%) | 10 (52.6%) | 25 (75.8%) | 19 (65.5%) | 0.01 | 89 (54.9%) |
| Masturbated alone | 50 (61.7%) | 14 (73.7%) | 18 (54.6%) | 18 (62.1%) | 0.62 | 100 (61.7%) |
| Used a sex toy | 7 (8.6%) | 5 (26.3%) | 5 (15.2%) | 9 (31.0%) | 0.02 | 26 (16.1%) |
| Tested or treated for sexually transmitted infections | 2 (2.5%) | 1 (5.3%) | 1 (3.0%) | 3 (10.3%) | 0.25 | 7 (4.3%) |
| Any partnered intercourse | 29 (35.8%) | 6 (31.6%) | 24 (72.7%) | 18 (62.1%) | <0.001 | 77 (47.5%) |
| Touched partner's genitals | 26 (32.1%) | 6 (31.6%) | 24 (72.7%) | 17 (58.6%) | <0.001 | 73 (45.1%) |
| Partner touched my genitals | 21 (25.9%) | 6 (31.6%) | 22 (66.7%) | 16 (55.2%) | <0.001 | 65 (40.1%) |
| Gave oral sex | 16 (19.8%) | 4 (21.1%) | 17 (51.5%) | 16 (55.2%) | <0.001 | 53 (32.7%) |
| Received oral sex | 16 (19.8%) | 5 (26.3%) | 13 (39.4%) | 15 (51.7%) | 0.01 | 49 (30.3%) |
| Vaginal sex | 12 (14.8%) | 4 (21.1%) | 19 (57.6%) | 15 (51.7%) | <0.001 | 50 (30.9%) |
| Anal sex | 5 (6.2%) | 1 (5.3%) | 2 (6.1%) | 6 (20.7%) | 0.12 | 14 (8.6%) |
| Median age at first sexual contact (IQR) | 18 (16–25) | 18.5 (16–26) | 19 (18–25) | 20 (17–25.5) | 0.63 | 19 (16–25) |
Full Table available in the Online Appendix.
Keywords
Abbreviations:
SB (spina bifida), ED (erectile dysfunction), EHS (Erection Hardness Score), IIEF (International Index of Erectile Function), PDE5I (phosphodiesterase type 5 inhibitors)To read this article in full you will need to make a payment
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Article info
Publication history
Published online: March 06, 2023
Accepted:
March 1,
2023
Received in revised form:
February 21,
2023
Received:
January 6,
2023
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2023 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.
