The survey was accessed by 249 participants, 209 of which consented to participate in the study, and 143 completed the survey in completion or skipping occasional prompts. Participants had a mean age of 27.4 years (± 5.5 years SD), were male (100%), and were predominantly white (72%) (Table 1). Of these participants, the reported average duration of HF symptoms were 3.9 years (± 3.7 years SD), with a range of 1 month to 16 years (Table 1). When asked if HFS symptoms occurred following a specific incident such as an injury, rough sex, excessive masturbation, etc., 58% reported yes, 14% reported no, and 38% reported not sure (Fig. 2).
Table 1
Characteristics of sample (n = 143)
Characteristic
|
Response
|
%
|
Age
|
Mean ± SD, years
|
27.4 ± 5.5
|
|
Range, years
|
18–45
|
|
Gender
|
Male
|
143
|
100
|
Transgender
|
0
|
0
|
Female
|
0
|
0
|
Race
|
White
|
103
|
72.0%
|
Black or African American
|
5
|
3.5%
|
American Indian or Alaskan Native
|
2
|
1.4%
|
Asian
|
16
|
11.2%
|
Native Hawaiian or Pacific Islander
|
0
|
0
|
Othera
|
17
|
11.9%
|
Duration of HFS symptoms
|
Mean ± SD, years
|
3.9 ± 3.7
|
|
Range, years
|
0.08–16
|
|
SD standard deviation |
aLatino, Arab, Hispanic with white skin, Mixed (Scandinavian and North African), Middle Eastern / Arab, mixed south Asian and European, Indian, Saudi Arabian mixed Asian white, unknown mixed. |
Based on the sparse literature and the common complaints observed in the online community, we compiled a comprehensive list of HFS-associated symptoms for participants to identify as having, not having, or not being sure (Fig. 3). In descending order of prevalence, participants responded yes to the following symptoms: changes in penis shape and/or size (e.g., shrunken, contracted, or noncompressible) (92.3%), rigid penis when not erect (90.9%), psychological distress, anxiety, and/or depression (89.5%), weak, tight and/or overactive pelvic floor muscles (85.3%), rigid penis upon palpation/touch (79.6%), numbness/loss of sensation anywhere on the penis (74.8%), difficulty or inability to have an erection (74.1%), decreased force of urinary stream (72.7%), changes in dorsal vein size (71.8%), cold glans (66.7%), loss of morning erections (66.2%), constipation (48.9%), generalized penile pain (46.0%), pain at the base of the penis (40.0%), scrotal pain (37.1%), penile stinging (35.5%), perineal pain during ejaculation (35.0%), penile pain during ejaculation (34.8%), penile burning (31.4%), scrotal numbness (30.7%), additional foreskin (21.3%), penile itching (18.6%), pain with urination (15.6%), inability to achieve orgasm (14.3%), and inability to ejaculate (9.3%).
Participants disclosed the daily activities that made their HFS symptoms better or worse (Supplementary Figs. 1 and 2). Participants reported the following activities that improve their symptoms: laying down (73.0%), stretching (44.1%), sitting (31.4%), cardio exercises (16.1%), isometric exercises (12.9%), weight lifting exercises (10.3%), standing (10.3%), sexual intercourse (8.9%), and masturbation (6.6%). Ten percent of participants reported “other” which included breathing exercises, hot bath/shower, pressing on the dorsal nerve, caffeine, or trigger point release. Conversely, participants reported the following activities that worsen their HF symptoms: masturbation (75.9%), standing (64.5%), weight lifting exercises (56.0%), cardio exercises (50.0%), sexual intercourse (45.7%), sitting (36.0%), stretching (19.9%), isometric exercises (15.2%), and laying down (7.2%). Nineteen percent of participants reported “other” which included coughing, squats, climbing stairs, alcohol, marijuana, caffeine, bowel movement, Kegel exercises, sleep difficulties, stress, diet, and pelvic floor training.
Participants were asked to select any comorbid conditions they had (Fig. 4). The most common comorbidities among the sample were pudendal neuralgia (16.9%), migraines/headaches (16.2%), spine abnormalities such as scoliosis (15.6%), disc bulge (13.3%), and disc herniation (13.2%), temporomandibular joint dysfunction (8.1%), and femoroacetabular impingement (8.0%). Thirteen percent of participants reported “other” which included Ureaplasma infection, chronic prostatitis, nail bed infections, ear infections, Zoon’s balanitis, yellowish prostatic fluid, and Candida overgrowth in stomach. Only 2.2% reported having Ehlers-Danlos Syndrome (EDS), and of those, three reported having hypermobile EDS and one reported having Classical-Like EDS.
Additionally, participants reported any other areas of the body they felt pain that was not from an obvious physical injury or trauma (Fig. 5). In descending order, patients reported pain in the lower back (64.7%), groin (60.0%), hips (35.6%), abdomen (30.8%), buttocks (27.6%), pubic bone (26.1%), neck (23.3%), mid back (19.4%), knee (17.2%), foot (14.2%), upper back (13.6%), shoulders (11.9%), ribs (9.7%), and ankle (7.5%). Eleven percent of participants reported “other” which included perineum, inner thigh, lower abdomen, jaw, shins, tailbone/coccyx, left eye, and pelvic floor.
Participants were asked to evaluate the efficacy of any treatments they received for their HFS symptoms using a six-point PGIC scale: 0 = worse, 1 = no improvement, 2 = little improvement, 3 = moderate improvement, 4 = great improvement, 5 = complete cure (Fig. 6). Of those who participated in therapies, PDE5 inhibitor treatment received the highest average score (2.6 ± 1.1) followed by pelvic floor physical therapy (1.8 ± 0.9), shockwave therapy (1.6 ± 1.1), diet/nutrition changes (1.6 ± 0.8), nerve blocks (1.6 ± 0.8), muscle relaxants (1.5 ± 0.6), anti-inflammatory medications (1.5 ± 0.7), cognitive therapy (1.4 ± 0.7), and nerve pain medications (1.4 ± 0.5).
Self-reported satisfaction with treatments was assessed with an 11-point slider scale (0 = completely dissatisfied to 10 = completely satisfied). PDE5 inhibitor treatment received the highest satisfaction score (4.8 ± 2.6), followed by PFPT (3.5 ± 2.4), cognitive therapy (2.9 ± 2.4), diet/nutrition changes (2.8 ± 2.6), nerve pain medications (2.7 ± 2.6), anti-inflammatory medications (2.6 ± 2.1), muscle relaxants (2.5 ± 2.0), shockwave therapy (2.0 ± 2.4), and nerve blocks (1.9 ± 1.5).