Sexual Dysfunction in POTS

Postural Orthostatic Tachycardia Syndrome (POTS) is a disorder of the autonomic nervous system that impacts many aspects of daily life, including sexual health. While POTS is primarily known for causing symptoms like dizziness, fatigue, and rapid heart rate upon standing, both research and patient-reported experiences highlight the significant effect it has on sexual function. Addressing sexual dysfunction is essential to improving quality of life for POTS patients, as it not only affects their physical health but also emotional well-being and intimate relationships.

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Prevalence and Impact of Sexual Dysfunction in POTS

A 2024 study by Blitshteyn et al. revealed that sexual dysfunction is prevalent among POTS patients, affecting both men and women. In a study involving 160 women and 29 men with POTS, patients reported significantly lower scores in sexual desire, arousal, and satisfaction compared to healthy individuals. For women, the Female Sexual Function Index (FSFI) indicated reduced sexual desire, arousal, and satisfaction. In men, the International Index of Erectile Function (IIEF) showed marked difficulties with erectile function, orgasm, and overall satisfaction​.

The physiological symptoms of POTS, such as tachycardia (rapid heart rate) and low blood pressure, disrupt normal sexual response. In women, these autonomic imbalances often lead to lower sexual desire and difficulty achieving satisfaction, while men experience erectile dysfunction and challenges with orgasm. This study highlights how POTS impacts not only the physical aspects of sexual activity but also the emotional and relational facets of intimacy​.

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Sexual Dysfunction in Women with POTS

Women with POTS often report various sexual difficulties, with decreased sexual desire being one of the most prevalent symptoms. In Blitshteyn's study, the FSFI revealed that desire and arousal scores were significantly lower in women with POTS than in healthy controls​. This can be attributed to several factors:

• Autonomic Dysregulation: The parasympathetic nervous system, which regulates arousal and lubrication, is impaired in POTS, leading to difficulties in sexual response .
• Hormonal Fluctuations: POTS has been linked to gynecological disorders, including menstrual irregularities and lightheadedness during menstruation, which may further reduce sexual desire .
• Fatigue and Pain: Women with POTS often report extreme fatigue and pain, such as headaches or body aches, which can make sexual activity physically exhausting​.

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Sexual Dysfunction in Men with POTS

Men with POTS frequently report erectile dysfunction (ED) as one of the most challenging aspects of their condition. Erectile dysfunction in POTS can be traced back to autonomic dysregulation, where blood flow to the genitals is impaired due to erratic control of the sympathetic and parasympathetic systems​. The 2024 study found that men with POTS scored significantly lower on the IIEF in the areas of erectile function, orgasmic function, and sexual desire​.

• Erectile Dysfunction: ED in men with POTS may occur because of decreased blood flow, hormonal imbalances, or medication side effects . The failure of the autonomic nervous system to properly regulate blood pressure and circulation is a primary cause.
• Orgasmic Dysfunction: Difficulty achieving orgasm or reduced sexual satisfaction is another common issue, often linked to fatigue or impaired blood flow during sexual activity​.

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Causes and Contributing Factors of Sexual Dysfunction in POTS

Sexual functioning is heavily influenced by the autonomic nervous system, which regulates blood flow, heart rate, and other processes necessary for sexual arousal and response. In POTS, the balance between the parasympathetic and sympathetic nervous systems is disrupted, leading to issues like erectile dysfunction and difficulty with arousal. The parasympathetic nervous system, which is responsible for genital arousal and lubrication, is often out of sync with the sympathetic system, which regulates stress responses and excitement. This miscommunication between the two systems can severely impair sexual functioning​.

Depression also plays a significant role in sexual dysfunction among POTS patients, particularly for women. The 2024 study found that depressive symptoms were strongly associated with sexual dysfunction, amplifying the challenges patients face. While depression was a major factor for women, age was a more significant predictor of sexual dysfunction in men, with older patients experiencing more severe symptoms​.

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Patient-Reported Experiences

Patient communities have long reported sexual dysfunction as a major issue in POTS, often sharing personal strategies and coping mechanisms to manage these difficulties. These real-world experiences offer valuable insights into how POTS affects sexual health beyond the findings of clinical studies.

1. Extreme Fatigue and Low Sexual Drive
   It is widely known in patient communities that fatigue plays a huge role in reducing sexual drive. Many women with POTS report feeling too tired or weak to engage in sexual activity, even when they experience a desire for intimacy. Some patients manage this by increasing their salt or electrolyte intake before engaging in sex to stabilize their blood pressure and reduce the risk of fainting or dizziness during the act.
2. Erectile Dysfunction and Managing Physical Strain
   Erectile dysfunction is commonly reported by men with POTS, with many finding it difficult to maintain an erection or reach orgasm. Some patients have found relief by engaging in sexual activities while lying down, which helps reduce strain on the heart and stabilize blood flow. Lying down also prevents fainting, which can occur when standing or engaging in more physically demanding positions.
3. Vasovagal Response (Fainting) During Intimacy
   Many patients report experiencing nausea, vomiting, or lightheadedness during sexual activity due to a vasovagal response (fainting), a misfiring of the vagus nerve. This autonomic response can occur even during activities that do not involve penetration, such as making out, and has been a significant barrier to maintaining a healthy sex life for many POTS patients. Slowing down, taking breaks, and closely monitoring heart rate during intimacy are strategies some have adopted to manage this issue.
4. Heart Rate Monitoring and Pacing
   It’s well known in the patient community that pacing sexual activity is crucial for preventing adverse symptoms like dizziness or fainting. Some patients use heart rate monitors, such as Apple Watches or other fitness devices, to keep track of their heart rate during sex. By slowing down when heart rate spikes or taking breaks as needed, many are able to continue sexual activity without triggering severe autonomic symptoms. Others have found success by keeping the head lower or lying on their side to prevent sudden changes in blood pressure.
5. Post-Sexual Activity Exhaustion
   Many POTS patients report feeling severely sick or weak after sexual activity, describing it as similar to post-exertional malaise. Recovery can take hours or even an entire day. Some patients have shared that they feel as though they need to take anxiety medications or rest for extended periods to recover from the physical exertion of sex. This post-activity exhaustion is a significant deterrent to maintaining an active sex life, with some patients avoiding intimacy altogether to prevent feeling ill afterward.

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General Strategies for Managing Sexual Dysfunction in POTS

POTS patients have developed several strategies to help manage sexual dysfunction. These include:

• Position Adjustments: Many patients find that lying down or avoiding upright positions helps manage heart rate and blood pressure, reducing the risk of fainting or dizziness during sexual activity.
• Hydration and Electrolytes: Staying hydrated and increasing salt intake before sex can help prevent drops in blood pressure. Many patients recommend electrolyte drinks like Gatorade or liquid IVs for stabilizing their condition during intimacy.
• Medications: Some patients take beta blockers or midodrine to manage their heart rate and blood pressure, which can reduce the intensity of symptoms during physical exertion.
• Communication with Partners: Openly discussing physical limitations and adjusting expectations with partners can help alleviate the pressure to perform, improving the emotional aspect of intimacy even if the physical side is limited.

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Next Steps for Research on Sexual Dysfunction in POTS

This groundbreaking research confirms what patients have reported for years and opens a new line of discovery in POTS research. For the first time, sexual dysfunction in POTS has been examined in a structured clinical study, validating the experiences of patients who have long struggled with these issues in silence. However, much more research is needed to fully understand the mechanisms behind sexual dysfunction in POTS and to develop targeted treatments.

Future studies should explore the hormonal, neurological, and cardiovascular factors that contribute to sexual dysfunction in POTS. Long-term research is also necessary to evaluate the effectiveness of current treatment strategies and medications in managing both sexual dysfunction and autonomic symptoms. Understanding the complex relationship between autonomic dysfunction, mental health, and sexual function is key to providing comprehensive care for POTS patients.

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FAQ

Does EDS have any overlap with erectile dysfunction (ED) in men?

While there is no direct link between EDS and erectile dysfunction in the literature, the overlap of symptoms such as vascular dysfunction, autonomic dysregulation, and chronic pain suggests that men with EDS may be at increased risk for developing ED. The biggest overlap is likely the shared short hand name for the conditions (ED vs. EDS) which often causes confusion for people who are not familiar with Ehlers-Danlos Syndrome.

Does POTS affect erectile dysfunction?

Yes, Postural Orthostatic Tachycardia Syndrome (POTS) can contribute to erectile dysfunction due to autonomic nervous system dysfunction, which affects blood flow regulation necessary for maintaining an erection.

Does dysautonomia cause sexual dysfunction?

Yes, dysautonomia, which affects the autonomic nervous system, can lead to sexual dysfunction by disrupting normal processes involved in sexual arousal, blood flow, and organ function.

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References

1. Reichgott, M. J. (1990). Clinical Evidence of Dysautonomia. In Walker HK, Hall WD, Hurst JW (Eds.), Clinical Methods: The History, Physical, and Laboratory Examinations (3rd ed.). Boston: Butterworths. Available from: https://www.ncbi.nlm.nih.gov/books/NBK400/
2. Peggs, K. J., Nguyen, H., Enayat, D., Keller, N. R., Al-Hendy, A., & Raj, S. R. (2012). Gynecologic disorders and menstrual cycle lightheadedness in postural tachycardia syndrome. International Journal of Gynaecology and Obstetrics, 118(3), 242-246. https://doi.org/10.1016/j.ijgo.2012.04.014
3. Basson, R., Rees, P., Wang, R., Montejo, A. L., & Incrocci, L. (2010). Sexual function in chronic illness. Journal of Sexual Medicine, 7(1 Pt 2), 374-388. https://doi.org/10.1111/j.1743-6109.2009.01621.x
4. Meston, C. M., & Frohlich, P. F. (2000). The neurobiology of sexual function. Archives of General Psychiatry, 57(11), 1012-1030. https://doi.org/10.1001/archpsyc.57.11.1012
5. Blitshteyn, S., Lange, A., Corinaldi, C., Guy, P., & Brook, J. (2024). Sexual dysfunction in postural orthostatic tachycardia syndrome (POTS): A cross-sectional, case-control study. Journal of Clinical Medicine, 13(8), 2274. https://doi.org/10.3390/jcm13082274

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