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Hard flaccid syndrome symptoms, comorbidities, and self-reported efficacy and satisfaction of treatments: a cross-sectional survey

Abstract

Hard flaccid syndrome (HFS) is a poorly understood condition with no formal consensus on its definition. We aimed to advance the understanding of HFS by evaluating symptom prevalence, cause of symptom onset, comorbidities, and self-reported efficacy and satisfaction with current treatments. An online, open, 42-question survey on Qualtrics with purposive and convenience sampling methods was conducted between May 9 and June 9, 2023 on participants self-identifying as having HFS. Participants were recruited through social media platforms. Only 58.0% of participants reported their HFS symptoms began following a specific incident/injury. Changes in penis shape/size (92.3%) and rigid penis when not erect (90.9%) were the most common complaints. Activities such as laying down and stretching improved symptoms in 73.0% and 44.1% of the participants, respectively, while masturbation and standing worsened symptoms in 75.9%, and 64.5% of the participants, respectively. Pudendal neuralgia (16.9%) was the most prevalent comorbid condition. Of those who participated in therapies, phosphodiesterase-5 (PDE5) inhibitor treatment had the highest patient global impression of change (PGIC) score (2.6 ± 1.1), indicating little to moderate improvement in symptoms. All other therapies scored between 1 and 2, indicating no change to little improvement in symptoms: pelvic floor physical therapy (PFPT) (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). Overall, a direct injury to the penis may not necessarily be the only cause of HFS for some patients, and current therapies generally do not benefit most patients. A better understanding of the root causes of HFS and innovative treatment strategies are greatly needed for HFS patients.

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Fig. 1: Participant flow chart among survey participants.
Fig. 2: Percentage of participants whose HFS symptoms began following an incident and/or injury.
Fig. 3: Symptoms and their prevalence among the HFS participants.
Fig. 4: Comorbid conditions among the HFS participants.
Fig. 5: Pain in other areas of the body, excluding a direct injury/trauma/accident, among HFS participants.
Fig. 6: PGIC scores of therapies among HFS respondents.

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Data availability

The data that support these findings are available upon reasonable request from the corresponding author.

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Acknowledgements

We thank all participants for their willingness to participate in our study. We thank all social media groups for allowing us to advertise the study on their groups.

Funding

No financial assistance was received in support of this study.

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Authors

Contributions

JN: conception, organization, and execution of research project; advertised study on social media; acquired IRB exempt status; designed survey on Qualtrics; collected, managed, and analyzed data; wrote manuscript. DMS: assisted with execution of research project, data interpretation, and manuscript writing.

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Correspondence to Jenny Niedenfuehr.

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The authors declare no competing interests.

Ethical approval

This study qualified for exempt status from University of Florida Institutional Review Board since it was an online survey that had no substantial risks to participants, the participants were not identifiable, and the data was confidential.

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Niedenfuehr, J., Stevens, D.M. Hard flaccid syndrome symptoms, comorbidities, and self-reported efficacy and satisfaction of treatments: a cross-sectional survey. Int J Impot Res (2024). https://doi.org/10.1038/s41443-024-00853-2

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