Synonyms
Persistent genital arousal disorder was first described by Leiblum and Nathan in 2001 and was initially called Persistent Sexual Arousal Syndrome (PSAS). (1) The name was changed to PGAD in 2006 because the condition was due to a genital arousal problem rather than a sexual arousal problem. Genitopelvic Dysesthesia (GPD) was added to the diagnosis (PGAD/GPD) in 2019 to incorporate the unpleasant and atypical sensations like pain which also occur with this condition. (2)
Subdivisions
General Discussion
Persistent genital arousal disorder/genitopelvic dysesthesia (PGAD/GPD) is an uncommonly reported women’s sexual health concern. It is characterized by unwanted and distressing genital sensations of arousal, pain/discomfort, and/or being on the verge of orgasm or having uncontrollable orgasms. Symptoms are not associated with any type of sexual activity or thoughts, and the sensations can lead to ongoing physical pain, emotional distress, and difficulty carrying out everyday activities.
Persistent genital arousal disorder is often associated with significant negative impact on those who suffer with this condition. Women with PGAD/GPD frequently experience depression, anxiety, and other negative emotions. Women often have difficulties with relationships, sexual satisfaction, and overall well-being. They also frequently have suicidal thoughts because the condition is so distressing. (3)
Signs & Symptoms
PGAD/GPD is associated with persistent or recurrent, unwanted, intrusive, distressing sensations of genital arousal. This may include spontaneous sensations such as pressure or discomfort, engorgement, pulsating, buzzing, pounding and/or throbbing in the genital tissues such as the clitoris, labia, vagina, perineum, and/or anus. Symptoms may also include being on the verge of orgasm, experiencing uncontrollable orgasms, and/or having an excessive number or orgasms. These sensations are not associated with sexual interest, thoughts, or fantasies. Masturbation and orgasms offer little or no relief. Women who have PGAD/GPD commonly experience anxiety, depression, insomnia, irritability, alienation, feelings of hopelessness, and thoughts of suicide. (2)
Causes
Specific causes of persistent genital arousal disorder/genitopelvic dysesthesia are not fully understood, and medical research indicates that many different triggers may result in PGAD/GPD symptoms. It appears that a complex combination of biological, psychological, and social factors contribute to the development and maintenance of the condition. Some of the biological/physical factors include abnormalities with the nervous system (brain, spinal cord, and nerves) or vascular system (blood vessels). Medications, hormones, and pelvic floor muscle problems can also trigger PGAD/GPD symptoms. (2)
Various triggers that contribute to PGAD can be categorized into five separate regions of the body:
- Region 1: End organ - Refers to problems in or around the clitoris, vulva, vagina, or bladder. Hormonal changes, vulvar nerve irritation, and skin conditions such as lichen sclerosus or lichen planus can trigger symptoms. Other triggers may include genitourinary syndrome of menopause, vaginal infections, or urinary system problems such as interstitial cystitis or urethral irritation.
- Region 2: Pelvis/Perineum - Pelvic floor dysfunction, pudendal neuralgia, vascular problems such as pelvic congestion syndrome or arteriovenous malformations (AVMs) can be a trigger in region 2.
- Region 3: Cauda equina - The cauda equina is the collection of nerves at the end of the spinal cord which innervate areas within the lumbar, sacral, and coccygeal spinal cord levels. Examples of problems that may contribute to PGAD/GPD include Tarlov cysts, herniated discs, annular tears, and spinal stenosis.
- Region 4: Spinal cord - Problems in the cervical or thoracic spinal cord, such as annular tears, disc herniations, spinal stenosis, or facet synovial cysts represent potential triggers in this region.
- Region 5: Brain - Underlying conditions such as epilepsy, aneurysms, or arteriovenous malformations in the brain can be causative factors. Certain medications such as selective serotonin reuptake inhibitors (SSRIs), selective serotonin-norepinephrine reuptake inhibitors (SNRIs), and trazodone can play a role in triggering PGAD/GDP symptoms. Either starting the medication or discontinuing it can trigger symptoms. (2)
In addition, psychological and social factors can affect how the brain perceives and interprets the abnormal genital sensation. Women with PGAD/GPD commonly experience mental health difficulties such as depression, anxiety, panic attacks, and certain obsessive-compulsive symptoms. (3) Anxiety may reinforce, increase, and maintain PGAD. Many women report that stress worsens PGAD/GPD symptoms, whereas distraction and relaxation strategies lessen the symptoms.
Affected Populations
PGAD/GPD can affect both men and women of all ages. Studies have shown that the incidence of PGAD/GPD ranges from 0.6% to 3% in women. The average age of developing symptoms is 37 years old, and can range from age 6 to 66. Symptoms started prior to age 18 in 25% of women. (5)
Diagnosis
Standard Therapies
Treatment is often tailored to manage the underlying condition or region felt to be causing unwanted symptoms. Generalized treatment measures may include psychological-based treatments (cognitive behavioral therapy), management of depression with medications, or focus on efforts to maximize relaxation through strategies such as distraction and/or hypnosis. (2)
Treatment options are often based on the affected region and are determined by underlying factors. Management may include the following:
- Region 1: End Organ - Removal of clitoral adhesions or other abnormalities affecting the clitoris, clitoral nerve blocks, topical creams with hormones or other medications, or topical steroid treatments. Dietary changes, antihistamines, bladder installations or neuromodulation may help manage interstitial cystitis.
- Region 2: Pelvis/perineum - Pelvic floor physical therapy, muscle relaxants, or botox injections may be recommended for pelvic floor muscle dysfunction. Treatment of pudendal nerve problems may include medications, nerve injections, surgery, or other procedures to address pudendal neuropathy. Interventional radiology procedures such as embolization may be recommended for pelvic congestion syndrome or AVMs.
- Region 3: Cauda equina - Management of factors involving the cauda equina may include physical therapy, lumbosacral shock wave therapy, or surgery for Tarlov cysts or lumbar disc disease.
- Region 4: Spinal cord - Treatment of spinal cord problems are similar to treatments for region 3 (cauda equina).
- Region 5: Brain - Adjusting the causative medication (either changing the dose, restarting it if it was discontinued, or stopping it if recently started) can help with the symptoms. Other medications have been used off-label to help manage symptoms, but there are no medications approved for the safe and effective management of PDA/GPD.
Each woman suffering with PGAD/GPD needs to be thoroughly evaluated to try to determine the specific trigger causing the unwanted and distressing symptoms. Treatment should then be individualized for each person and take into account the biological, psychological and social factors that play a role in this complex and distressing condition.
Investigational Therapies
Support Available
There are support groups on social media platforms for women who experience PGAD/GPD.
References
- Leiblum S, Nathan SG. Persistent Sexual Arousal Syndrome: A Newly Discovered Pattern of Female Sexuality. J Sex Marital Ther 2001;27:365-380.
- Goldstein I, Komisurak B, et al. Internations Society for the Study of Women’s Sexual Health (ISSWSH) Review of Epidemiology and Pathophysiology, and a Consensus Nomenclature and Process of Care for the Management of Persistent Genital Arousal Disorder/Genito-Pelvic Dysesthesia (PGAD/GPD). J Sex Med 2021;18:665-697.
- Jackowich RA, Pink L, Gordon A, et al. An Online Cross-Sectional Comparison of Women with Symptoms of Persistent Genital Arousal, Painful Persistent Genital Arousal, and Chronic Vulvar Pain. J Sex Med 2018;15:558-567.
- Leiblum S, Brown C, Wan J, et al. Persistent sexual arousal syndrome: a descriptive study. J Sex Med 2005;2:331-337.
- Jackowich R, Pink L, Gordon A, et al. Symptom Characteristics and Medical History of an Online Sample of Women Who Experience Symptoms of Persistent Genital Arousal. J Sex Marital Ther 2018;44:111-126.
