Rare condition PGAD comes with social stigma
DEAR DR. ROACH: I have persistent genital arousal disorder. I find it incredibly difficult to talk about with my doctors and I’ve been openly mocked for it. I find there is a distinct lack of sensitivity in the medical community about this. People like me genuinely suffer in a variety of ways, whether it is from the physical side effects of being constantly aroused and unable to find relief or from the psychological trauma and stress of being aroused in inappropriate situations, such as funerals and job interviews.
Something so simple as a conversation with my own grandmother can be a horrible experience if I am having a symptom flare. I’ve had humiliating experiences over the years with doctors and nurses who have made inappropriate comments like, “How is this a bad thing?” or from accusations of being some kind of sexual deviant during annual pelvic exams.
People with PGAD are not sexual deviants. We do not enjoy our condition. It’s physically painful, disruptive to our everyday lives and embarrassing. We are not people who have some kind of moral failing, and we’re not mentally ill. It would be sincerely appreciated if you could spread some awareness about PGAD so that sufferers like myself can have a more trusting relationship with our providers. — Anon.
ANSWER: I appreciate your writing, as I think most people — and even some providers — are not familiar with this condition.
PGAD is a state of sexual arousal that is unwelcome, unrelated to desire and unrelieved by sexual intercourse. It is triggered by physical stimuli, such as traveling in a car, or by psychological stimuli, especially anxiety. It is almost exclusively described in women. Many describe the symptoms as painful.
Some experts note similarities of PGAD and other pain syndromes, including chronic pelvic pain from neuropathy. There also seems to be a connection with restless leg syndrome, for unclear reasons. Many women report a history of sexual abuse. While antidepressants often are used to treat this condition, there also is some evidence that withdrawal from antidepressants can cause or worsen symptoms.
There is no single treatment that is effective for everyone with PGAD. Counseling and medication are used. Cold packs or cold baths have been helpful for some.
If there is a take-home message, it’s that people with this condition shouldn’t feel bad about it and shouldn’t feel embarrassed about it. There are ways to help, but recognizing the condition is the first step.
Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.cornell.edu or send mail to 628 Virginia Dr., Orlando, FL 32803.