Contemporary studies report the prevalence of PD to be approximately 0.4–3.2% of men in the United States [13]. The psycho-sexual consequences of erectile dysfunction are frequently severe and have been well described [14, 15]. So far, there has been a paucity in the literature on the psycho-sexual impact of PD from the perspective of patients themselves. Our investigation revealed a variety of similarities and differences in comparison to the psycho-sexual morbidity described in existing literature. The major source of distress for men with PD in previous investigations was aesthetic concerns regarding the shape and size of their penis, even if function was normal. Men with PD were more distressed by the appearance of their penis than pain [16]. Similarly, our qualitative data showed that concerns about curvature were mentioned at the highest frequency of all physical PD symptoms and bothered patients the most. We speculate that curvature poses the most prominent visual deformity and therefore most frequently apparent issue for PD patients, resulting in significant adverse psychological impact more so than any other physical manifestation.

Kuja-Halkola, Henningsohn, D’Onofrio, Mills, Adolfsson, Larsson, et al. carried out the largest population based cohort study on PD to date and found that patients with PD were more likely to have psychiatric disorders including substance abuse, anxiety disorder, depression, self-injurious behavior, general psychiatric outcomes and alcohol misuse than men without PD [17]. Our investigation similarly identified the presence of substance use disorder in a subset of patients. Although substance use may act as a coping mechanism for PD patients, the presence of substance use disorder may cause further harm through additional comorbidities, psychological consequences, and increased social isolation [5]. Self-injurious behaviors are powerful predictors of suicide [18], but the percentage of patients with actual suicidal ideation was not reported by Kuja-Halkola, Henningsohn, D’Onofrio, Mills, Adolfsson, Larsson, et al. Unique to our study was the identification of PD patients with suicidal ideation. Online health forums may be valuable resources in reducing this burden as previous investigations have demonstrated the efficacy of these communities in producing long-term behavioral changes and alcohol use reduction [19]. Regardless, the excess risk of self-injurious behaviors and suicidal ideation necessitates psychological intervention and reduction of these risks stands out as an important objective for care providers. Clinicians should be aware that substance use disorder and suicide is a risk in some PD patients.

PD often impacts the sexual experience of both male and female sex partners (FSPs). The psychological consequences for FSP are often underappreciated [5, 20]. In our study, sexual partners developed sexual dysfunction including sexual dissatisfaction, dyspareunia, and decreased libido. Additionally, we found partners sometimes felt helpless, undesired, and responsible for the disease when their partners struggled with PD. We speculate that they are often left in solitude when they are not included in the evaluation and treatment plan, resulting in increased emotional distress and suffering. Female sexual dysfunction in the general population is common, estimated to impact 10–80% of women depending on age and study methodology [21,22,23]. Farrell, Ziegelmann, Bajic, and Levine found that that 25% of FSPs of patients with PD had evidence of sexual dysfunction based on survey responses. Referral to an expert in sexual health is warranted in these circumstances [5]. These issues may culminate in relationship disruptions and alienation of partners who often provide invaluable emotional and social support for PD patients. Additionally, our investigation found that couples developed alternative methods for achieving sexual satisfaction other than penetrative intercourse. Sex therapy may therefore promote self-acceptance and encourage couples to explore different approaches for achieving sexual satisfaction. Thus, it is important to engage both patients and partners during evaluation and treatment. Further studies should additionally investigate the impact PD on men who have sex with men. Although previous investigations have found that gay men experience greater psychosocial burden due to PD, there is a gap in the literature detailing the impacts on their male sexual partners [24].

Although psychological distress is often triggered by physical symptoms, we found that treating PD did not always resolve psychological and relationship issues. This finding is in agreement with previous investigations which have demonstrated that surgical straightening of penile curvature improved intromission comfort and penile features, but failed to improve interpersonal relationships or psychogenic ED [25]. Thus, it is important to note that depressive symptoms remained consistently high over time, suggesting PD has a lasting psychological impact [2]. For urologists, this reinforces the benefit of inquiring about psychological issues in their patients with PD and maintaining longitudinal postoperative follow up. Psychological evaluation should also be an integral component of preoperative evaluation. It helps to gauge the patient’s readiness to and expectations of surgical intervention. Any unrealistic or inappropriate expectations should be identified and addressed by the surgeon to ultimately improve patient satisfaction. Furthermore, we found that IPP and incision and grafting were associated with the highest rates of negative emotions following surgical intervention.

Among the posters affected by PD, only a portion sought or were referred to psychological intervention. This may be attributed to the fact that physicians are often unaware of the psychological sequalae of PD on patients [4]. Psychological therapy typically takes place in three different forms: individual, couple, and group therapy [3]. It may be directed at emotional, psycho-sexual, and relationship problems caused by PD. It may further take place at the time of diagnosis or follow up given the chronicity of the condition. Among patients and partners who posted about receiving therapy in any format during our investigation, the majority failed to see psychological improvements. This resistance of depressive symptoms to conventional therapy highlights the need for future investigations directed toward novel multimodal management strategies for PD associated psychological distress. It is also advisable to compare the change in psycho-sexual status of partners before and after treatment. Overall, these steps will enable clinicians to better assist couples affected by PD to overcome the complex interplay between physical and psychological burden.

Our study contained several limitations. A major limitation is the limited sample size of posters from three forums. As well, patients and their partners may suffer from a physical or psychological condition and simply not share it online. Conversely, multiple posts on different forums may have been made by the same poster. Patients and partners willing to post online may be inherently different from those who do not post, so it is unknown whether these results are generalizable to the general population. Some codes were limited in the amount of details they could capture. For example, codes such as curvature and pain due to PD do not elaborate on the severity of these symptoms. Furthermore, the qualitative design of our study is inherently subjective during the coding process and there may have been differences in code application depending on the coder. We attempted to account for this through calculation of Cohen’s kappa coefficient and thorough discussion of correct interpretation and code application. Our study design further limited analyses to descriptive statistics. Non-heterosexual men and their partners are also likely underrepresented in this analysis. Although we are able to note depressive symptoms such as sadness and self-identified depression, it is impossible to make psychiatric assessments given our methodology and these symptoms should not be taken as clinically significant diagnoses. Additionally, we analyzed posts from three particular forums that had the most publicly available information, but the opinions of these posters do not necessarily represent those of the general PD population. Evaluation of additional primary sources beyond online social health networks may capture a broader sample of PD patients.