Jenny Niedenfuehr, MPH, CHES®, CPH
Hard Flaccid Syndrome
Niedenfuehr, J.M.; Stevens, D; Hard Flaccid Syndrome: Existing Symptoms, Treatments, and Comorbidities
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Hard flaccid syndrome (HFS) is a poorly understood condition that very few providers can treat. More research is needed to improve the quality of life for people with HFS and other penile conditions such as Mondor's disease, Peyronies, Buried Penis etc..
A recent review by Abdessater et al. (2020) defines HFS as a semi-rigid penis at the flaccid state alongside other symptoms such as urination issues (frequency, retention, pain), pain at the base, cold glans, numbness, loss of sensation, loss of size, and pain with standing. Patients may experience psychological distress and even suicidal ideation and other mood disorders such as depressionand anxiety with this conditon.
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Other symptoms may include (not reported in the literature):
Enlarged veins, perineum pain, loss of morning wood, redness/irritation, loss of libido, testicular symptoms, constipation, pain in hips, back, and abdominal area, long flaccid (irregularly long and soft).
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The main established known causes (Abdessater et al., 2020; Gul et al,. 2020; Hughes et al., 2021):
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Traumatic injury
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Excessive masturbation
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Jelqing or penile enhancement
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Vascular issues
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Pelvic floor tension/hypertonicity/dysfunction
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However, these causes may be viewed as lacking as the current research is very minimal and HFS is often viewed as a rare condition (Yachia et al., 2020).
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Other hypothesized causes:
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Damage or injury to the suspensory ligament
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Damage or injury to vascular structure of the penis
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Previous use of SSRIs
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Pudendal nerve entrapment
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Lumbar spine radiculopathy - disc abnormalities (degeneration, bulge, herniation, annular tear)
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Hernias (Inguinal, direct/indirect)
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Hip abnormalties (hip dysplasia, impingement, and labral tears)
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Ehlers-danlos syndrome
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Genito - Pelvic Dysthesia (GPD):
Goldstein et al. (2023) has categorized this condition as form of genito-pelvic dysthesia, which results from a hypogastric nerve discrepancy, further causing chronic or acute muscle contraction.
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Treatments
Treatments range from shockwave therapy, pelvic floor physical therapy, phosphodiesterase inhibitors, nerve blocks, anti-inflammatory medications, and nerve medications like gabapentin, duloxetine, and nortriptyline (Abdessater et al,. 2020; Goldstein et al., 2023). However, as reported by Gul et al. (2020), there are still subsets of patients on these online forums that are not benefiting from any of these treatments and are in need of further investigation by medical providers.
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Region 1 / End Organ
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Region 2 / Pelvic Perineum
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Region 3/ Cauda Equina
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Region 4: Spinal Cord
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Region 5: Brain
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The majority of the available literature on HFS reflects patient testimonials and interactions on support groups, internet forums, and private chat groups (Gul et al., 2020). The online communities are portrayed as channels where patients seek out health information and find social support (Jia et al., 2021). Patient perceptions can influence providers’ communication and decision making, and often providers are deemed as knowing very little about patient beliefs (Kennedy et al., 2017). While there is little literature known about HFS, patients have been shown on these online forums to express psychological distress, and negative attitudes, beliefs, and perceptions in seeking help due to dismissal, fear of dismissal, experiencing negligence, or not receiving help at all (Gul et al., 2020).
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Hard Flaccid Support:
https://www.reddit.com/r/HardFlaccidStudy/
http://www.reddit.com/r/Hard_Flaccid
https://www.reddit.com/r/HardFlaccidGroup
https://www.reddit.com/pudendalneuralgia
https://www.reddit.com/hardflaccidresearch
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References
Abdessater, M., Kalbar, A., Akakpo, W., & Beley, S. (2020). Hard flaccid syndrome: state ofcurrent knowledge. Basic and Clinical Andrology, 30, 7. https://doi.org/10.1186/s12610-020-00105-5
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Chapman, E. N., Kaatz, A., & Carnes, M. (2013). Physicians and implicit bias: how doctors mayunwittingly perpetuate health care disparities. Journal of General Internal Medicine, 28(11), 1504–1510. https://doi.org/10.1007/s11606-013-2441-1
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Chapman, A. L., Hadfield, M., & Chapman, C. J. (2015). Qualitative research in healthcare: anintroduction to grounded theory using thematic analysis. The Journal of the Royal College of Physicians of Edinburgh, 45(3), 201–205. https://doi.org/10.4997/JRCPE.2015.305
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Goldstein , I., Komisaruk, B., & Yee, A. (2023.). Hard Flaccid Syndrome Proposed to Be Secondary toPathological Activation of a Pelvic/Pudendal-Hypogastric Reflex. Hard flaccid syndrome proposed to be secondary to pathological activation of a pelvic/pudendal-hypogastric reflex - american urological association. https://auanews.net/issues/articles/2023/may-2023/hard-flaccid-syndrome-proposed-to-be-secondary-to-pathological-activation-of-a-pelvic/pudendal-hypogastric-reflex
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Gul, M., Huynh, L. M., El-Khatib, F. M., Yafi, F. A., & Serefoglu, E. C. (2020). Analysis of Internet forum discussions on hard flaccid syndrome. International journal of impotence research, 32(5), 503–509. https://doi.org/10.1038/s41443-019-0151-x
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Gul, M., Towe, M., Yafi, F. A., & Serefoglu, E. C. (2020). Hard flaccid syndrome: initial reportof four cases. International Journal of Impotence Research, 32(2), 176–179. https://doi.org/10.1038/s41443-019-0133-z
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Hall, J. A., Epstein, A. M., DeCiantis, M. L., & McNeil, B. J. (1993). Physicians' liking for theirpatients: more evidence for the role of affect in medical care. Health Psychology: Official Journal of the Division of Health Psychology, 12(2), 140–146. https://doi.org/10.1037//0278-6133.12.2.140
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Hughes, K., Parnham, A., & Lucky, M. (2018). Hard Flaccid Syndrome. Urology News, 23(1).
https://www.urologynews.uk.com/features/synopsis/post/hard-flaccid-syndrome
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Jia, X., Pang, Y., & Liu, L. S. (2021). Online Health Information Seeking Behavior: ASystematic Review. Healthcare, 9(12), 1740. https://doi.org/10.3390/healthcare9121740
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Kennedy, B. M., Rehman, M., Johnson, W. D., Magee, M. B., Leonard, R., & Katzmarzyk, P. T. (2017). Healthcare Providers versus Patients' Understanding of Health Beliefs and Values. Patient Experience Journal, 4(3), 29–37.
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Gul. M., E.C. Serefoglu, PO-01-037 Hard Flaccid: Is It a New Syndrome?, The Journal of SexualMedicine, Volume 16, Issue Supplement_2, May 2019, Page S58, https://doi.org/10.1016/j.jsxm.2019.03.194
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Metz, M. E., & Seifert, M. H., Jr (1990). Men's expectations of physicians in sexual healthconcerns. Journal of Sex & Marital Therapy, 16(2), 79–88. https://doi.org/10.1080/00926239008405254
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Perttula E. (1999). Physician attitudes and behaviour regarding erectile dysfunction in at-risk patients from a rural community. Postgraduate Medical Journal, 75(880), 83–85. https://doi.org/10.1136/pgmj.75.880.83
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Street, R. L., Jr, Gordon, H., & Haidet, P. (2007). Physicians' communication and perceptions ofpatients: is it how they look, how they talk, or is it just the doctor?. Social Science & Medicine (1982), 65(3), 586–598. https://doi.org/10.1016/j.socscimed.2007.03.036
Yachia D. (2020). Comment on "A qualitative analysis of Internet forum discussions on hardflaccid syndrome". International Journal of Impotence Research, 32(5), 551–553. https://doi.org/10.1038/s41443-019-0192-1
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