What is it? What causes it? How is it treated?
By Saurabh Sharma, MD, Neurologist, Atlantic Health System, New Jersey
Persistent genital arousal disorder (PGAD) is a largely female-reported syndrome characterized by spontaneous undesired sexual arousal and/or orgasm. Though a handful of cases were written up in the medical literature as early as 1989, the concept of persistent genital arousal disorder was not formally described until 20011. Previous cases and anecdotes largely attributed these symptoms to abnormalities in the pelvis, genital irritation or infection, seizures, psychological causes, and/or medication side effects. However, more recent research strongly implicates a role for the peripheral nervous system in PGAD.
In 2012 and 2015, two case series provided the first strong evidence for PGAD’s association with Tarlov cysts2,3. These fluid-filled sacs occur in nerve roots, and appear most commonly at the base of the spine (i.e., lumbosacral perineural cysts).
A small study, considered the first of its kind, was published in early 2020 and comprehensively evaluated 10 female patients who presented to neurology clinics with symptoms of neuropathic pain in conjunction with unprovoked/undesired sexual arousals4. As in prior case reports, these symptoms were not relieved by masturbation or orgasm, and most women tended to have other symptoms such as pelvic, buttock, or leg pain. The study proposed new associations of sensory chronic inflammatory demyelinating polyneuropathy (CIDP)/polyneuropathy, herniated disc, and cauda equina syndrome with PGAD symptoms. In such cases, lesions affecting the sacral networks that transmit sexual arousal are likely disrupted, akin to neuropathic pain and itch. Allodiegersis (arousal from nonsexual stimuli) or aftodiegersis (unprovoked arousal) are proposed terms to describe this type of pain, analogous to the term allodynia used to describe a type of neuropathic pain. PGAD also shares some similarities with priapism, another painful genital condition similarly linked to a myriad of causes which lead to persistent and painful erections.
Treatment modalities target the underlying identified cause. For example, surgical removal of a nerve cyst, or withdrawal of the offending medication, can be curative. Neuropathy-targeted treatments such as intravenous immunoglobulin (IVIG) have alleviated symptoms in others.
The true prevalence of PGAD is unknown. It appears to occur mainly in women, with only a handful of cases reported so far in men. Nonetheless, online forums and chat groups indicate that there are likely many more men and women who remain undiagnosed and untreated. Understandably, patients may feel uncomfortable discussing these symptoms with their provider(s), so it is paramount that physicians gain a greater understanding of this disorder, and be conscientious and mindful when evaluating patients with neuropathic symptoms and/or genital pain disorders.
References
1. Persistent sexual arousal syndrome: a newly discovered pattern of female sexuality.
Leiblum SR, Nathan SG.
J Sex Marital Ther. 2001 Jul-Sep;27(4):365-80.
2. Prevalence of sacral spinal (Tarlov) cysts in persistent genital arousal disorder.
Komisaruk BR, Lee HJ.
J Sexual Medicine 2012;9:2047-2056.
3. Persistent genital arousal disorder caused by spinal meningeal cysts in the sacrum: Successful neurosurgical treatment.
Feigenbaum F, Boone K.
Obstet Gynecol 2015;126:839-843.
4. Persistent genital arousal disorder: a special sense neuropathy.
Oaklander AL, Sharma S, Kessler K, Price BH.
Pain Reports. 2020. Reference pending.
PGAD in the News
Arousal Syndrome No Cause For Shame, Doctors Say, WebMD News
Persistent Genital Arousal Disorder: Update on Rare Neurological Disorder, Science Blog
Study reveals insights on hidden sexual-arousal disorder, Massachusetts General Hospital News