Persistent Genital Arousal Disorder Overview
Learn About Persistent Genital Arousal Disorder
In our understanding of human health, there is a clear and important distinction between sexual desire and the body’s physical response of arousal. For individuals living with a rare and deeply misunderstood condition known as Persistent Genital Arousal Disorder (PGAD), this distinction is at the heart of a daily struggle. PGAD is a distressing condition characterized by spontaneous, persistent, and unwanted feelings of genital arousal that occur in the complete absence of any sexual interest or desire. It is not a psychological disorder or a form of hypersexuality; it is a legitimate and often debilitating medical condition. Due to its sensitive nature and a profound lack of awareness, many who suffer from PGAD do so in silence, filled with shame, confusion, and fear. This guide aims to shed light on this challenging condition, providing clear, compassionate information to validate the experiences of those affected and outline the path toward diagnosis and management.
Persistent Genital Arousal Disorder (PGAD) is defined by a set of specific criteria established by international experts in sexual medicine. According to the International Society for the Study of Women’s Sexual Health (ISSWSH), PGAD is characterized by persistent or recurring, unwanted sensations of genital arousal that are intrusive and distressing.
The key features that define the condition are:
- The feelings of physical arousal (such as tingling, throbbing, pressure, and sensitivity in the genitals) last for hours, days, or even longer.
- These sensations are not associated with any feelings of sexual desire, excitement, or romantic thoughts.
- The arousal is not relieved by one or more orgasms. In fact, for many, an orgasm can provide only momentary relief or can even make the symptoms worse.
- The persistent sensations cause significant personal distress, anxiety, and can interfere with daily life.
- The symptoms cannot be attributed to another medical condition, such as an infection, or to a medication’s side effect.
It is important to differentiate PGAD from hypersexuality. Hypersexuality (sometimes called sex addiction) is a psychological condition characterized by excessive sexual thoughts, fantasies, and urges that are difficult to control. PGAD, in contrast, is a physiological problem. The physical sensations of arousal are entirely disconnected from the mind’s desire for sexual activity. For the person experiencing it, the sensations are as unwanted and intrusive as a chronic itch or a persistent ringing in the ears.
While PGAD was first described and is most commonly diagnosed in women, a similar condition of unwanted and persistent arousal can also occur in men. The condition is sometimes called Restless Genital Syndrome, drawing a parallel to the uncomfortable sensations of Restless Legs Syndrome.
In my experience, PGAD is one of those deeply misunderstood conditions where patients suffer in silence, often misjudged or ignored before receiving proper care.
Analogy: Imagine your body is sounding an alarm, but there’s no fire. PGAD is like a false arousal alarm that keeps ringing without reason, leaving the person overwhelmed, confused, and often desperate for relief.
For many years, PGAD was mistakenly thought to be a purely psychological issue. Today, it is understood to be a complex medical condition with physiological roots, although the exact cause is often difficult to pinpoint and is likely different for different individuals. It is not a psychological disorder, but it causes immense psychological distress.
Research points to several potential underlying causes, most involving the nervous system or blood flow in the pelvic region.
Neurological Causes
This is a leading area of investigation. The unwanted sensations are believed to be a form of neuropathy or nerve dysfunction.
- Small Fiber Sensory Neuropathy: Damage or hypersensitivity of the small nerve fibers that supply sensation to the genitals can cause them to send spontaneous, inappropriate signals to the brain, which are interpreted as arousal.
- Pudendal Nerve Entrapment: If the pudendal nerve becomes compressed or irritated by surrounding muscles or ligaments, it can lead to the symptoms of PGAD.
- Spinal Cord Issues: Conditions affecting the lower spinal cord, where the nerves to the pelvis originate, can be a cause. Tarlov cysts, which are fluid-filled sacs that form on the nerve roots at the base of the spine, have been identified as a cause of PGAD in some patients by pressing on the relevant nerves.
- Restless Legs Syndrome (RLS) Connection: There is a strong clinical overlap between PGAD and RLS. Some researchers believe PGAD may be a specific manifestation of RLS, essentially a “restless genital syndrome.”
Vascular Causes
Problems with pelvic blood flow can also cause symptoms. Pelvic venous insufficiency, a condition where veins in the pelvis become swollen and congested with blood (similar to varicose veins in the legs), can cause feelings of pressure and throbbing that mimic the sensations of PGAD.
Pharmacological Causes
In some individuals, the onset of PGAD has been linked to the use of, or more commonly, the withdrawal from certain medications, particularly Selective Serotonin Reuptake Inhibitors (SSRIs) used to treat depression and anxiety.
Clinically, I’ve seen PGAD triggered after abrupt antidepressant withdrawal or pelvic surgery, making it crucial to take a full medication and neurological history.
PGAD can develop suddenly or gradually, and it may appear in people with no prior history of sexual dysfunction. It is a rare disorder, and it can affect women of any age, though it is often reported in post-menopausal women.
Some potential associations and risk factors that have been noted in clinical practice include:
- A history of anxiety, depression, or obsessive-compulsive disorder (OCD): It is a classic “chicken-and-egg” question whether these conditions are a risk factor for PGAD or a direct psychological consequence of living with its distressing symptoms.
- A history of Restless Legs Syndrome.
- Having Tarlov cysts or other spinal issues.
- Starting or stopping antidepressant medications.
- In some cases, a minor physical trauma to the pelvis or lower back has preceded the onset of symptoms.
Patients often feel ashamed or confused, thinking something is psychologically wrong. But PGAD is a physical condition with real biological underpinnings.
PGAD symptoms are persistent, distressing, and typically not relieved by orgasm. The key feature is that the arousal is unwanted and intrusive, not tied to sexual activity or thoughts.
This sensation is often described differently by different individuals, but commonly includes:
- A feeling of intense pressure, swelling, or congestion in the clitoris, vagina, or labia.
- Tingling, vibrating, or buzzing sensations.
- A feeling of being constantly “on the verge” of an orgasm, but without any sense of pleasure or desire.
- The symptoms are physically located in the genitals but are not experienced as “sexual.”
This core symptom is accompanied by a specific set of qualifying criteria that are essential for the diagnosis:
- The arousal sensations are not caused by any sexual thoughts, feelings of desire, or sexual stimulation.
- The sensations are intrusive, distracting, and distressing.
- The feeling is not relieved by having an orgasm. While an orgasm might provide a few minutes of relief, the sensations typically return quickly, and sometimes with even greater intensity.
- The symptoms persist for hours, days, or continuously, and can significantly interfere with a person’s ability to concentrate, work, sleep, and engage in daily activities.
- There is no other medical cause, such as a urinary tract infection or skin condition, that can explain the symptoms.
In my clinical experience, patients describe PGAD as feeling “trapped in their own body”, they often avoid relationships, public places, or even sitting, due to the unpredictability of symptoms.
PGAD diagnosis must be made by a knowledgeable and compassionate healthcare provider, such as a gynecologist specializing in sexual medicine, a urologist, or a neurologist. The process is one of both confirmation of symptoms and careful exclusion of other causes.
- A Detailed and Sensitive Medical History: A provider will ask specific questions based on the established diagnostic criteria to understand the nature of the sensations and, crucially, their unwanted and non-sexual quality.A Thorough Physical and Pelvic Examination: This is done to rule out any infections, skin disorders, or other apparent physical abnormalities.
- Psychological Evaluation: This is important for identifying and treating the coexisting anxiety, depression, and distress that are a natural reaction to living with PGAD. It is not done to imply that the cause is “all in your head.”
- Specialized Testing: If a specific underlying cause is suspected, further testing may be ordered to investigate it. This can include:
- Neuroimaging: An MRI of the spine and pelvis may be performed to look for Tarlov cysts or other sources of nerve compression.
- Vascular Ultrasound: A specialized Doppler ultrasound can be used to look for evidence of pelvic venous insufficiency.
- Neurological Testing: A referral to a neurologist may be required to test for small fiber neuropathy or other nerve disorders.
I always stress that PGAD is not “in the patient’s head”, but addressing emotional distress is just as important as identifying any physical causes.
There is no universal cure for PGAD, but many patients find partial or full relief with a multidisciplinary approach.
1. Self-Care and Coping Strategies
These are important first steps that individuals can take to try to gain some control over the symptoms.
- Trigger Identification: Keeping a detailed symptom diary can help identify any activities, foods, or situations that seem to worsen the sensations.
- Distraction: Engaging the brain in a complex, non-sexual mental task can sometimes help to divert attention.
- Numbing or Cooling: Applying cold packs or ice packs to the genital area can help to reduce the sensations of arousal.
- Mindfulness and Relaxation Techniques: While not a treatment for the physical cause, they can be powerful tools for managing the anxiety and panic that often accompany the symptoms.
2. Physical Therapy Specialized pelvic floor physical therapy
This is a key treatment for many individuals. A trained therapist can identify and help release tension and trigger points in the pelvic floor muscles that may be irritating the nerves that supply the genitals.
3. Medications
There is no FDA-approved medication specifically for PGAD. All use of medication is “off-label,” based on case reports and clinical experience. Medications that may be tried include:
- Drugs for Nerve Pain: Medications like gabapentin, pregabalin, or amitriptyline are often used to help calm down hypersensitive nerves.
- Anxiolytics: Low doses of benzodiazepines like clonazepam may be used to help reduce the “over-firing” of the nervous system.
4. Treating the Underlying Cause
If a specific underlying cause is identified, treating it can lead to resolution of the PGAD symptoms. This could include procedures to treat Tarlov cysts or treatments for pelvic venous insufficiency.
I’ve found that many patients improve when they feel validated, supported, and treated with a mix of physical and emotional therapies. No single solution works for everyone, but hope often begins with understanding.
Persistent Genital Arousal Disorder is a real, physiological, and profoundly distressing medical condition that has remained in the shadows for far too long. It is a condition of unwanted physical sensation, completely divorced from sexual desire, that can inflict immense psychological suffering and isolation. It is crucial for both patients and the medical community to understand that PGAD is not a moral failing or a psychiatric invention; it is a complex neurological and sensory disorder. While the path to diagnosis and treatment is often challenging, hope lies in increasing awareness. Early diagnosis and a compassionate, multidisciplinary approach can greatly improve quality of life.
- International Society for the Study of Women’s Sexual Health (ISSWSH). (2021). Persistent genital arousal disorder. Retrieved from https://www.isswsh.org/resources/public-education/persistent-genital-arousal-disorder-pgad
- National Organization for Rare Disorders (NORD). (2023). Persistent Genital Arousal Disorder. Retrieved from https://rarediseases.org/rare-diseases/persistent-genital-arousal-disorder/
- National Institutes of Health, Genetic and Rare Diseases Information Center (GARD). (2023). Persistent genital arousal disorder. Retrieved from https://rarediseases.info.nih.gov/diseases/10971/persistent-genital-arousal-disorder
Irwin Goldstein is an Urologist in San Diego, California. Dr. Goldstein is rated as an Elite provider by MediFind in the treatment of Persistent Genital Arousal Disorder. His top areas of expertise are Persistent Genital Arousal Disorder, Erectile Dysfunction (ED), Vulvodynia, Hormone Replacement Therapy (HRT), and Reconstructive Urology Surgery.
Robyn Jackowich practices in Kingston, Canada. Ms. Jackowich is rated as an Elite expert by MediFind in the treatment of Persistent Genital Arousal Disorder. Her top areas of expertise are Persistent Genital Arousal Disorder, Vulvodynia, and Chronic Pain.
Caroline Pukall practices in Kingston, Canada. Ms. Pukall is rated as an Elite expert by MediFind in the treatment of Persistent Genital Arousal Disorder. Her top areas of expertise are Persistent Genital Arousal Disorder, Vulvodynia, Chronic Pain, and Vaginismus.
