In 2009, I published a post about a doctor who claimed to have successfully treated persistent genital arousal disorder, or PGAD, with oxytocin. Since then, I've heard from time to time from women who suffer from PGAD, also called PSAS, wanting information about potential treatment. Unfortunately, there has been little information and no resources.
PGAD is at the least uncomfortable and at worst, quite debilitating. When women with PGAD talk to healthcare professionals, they're sometimes dismissive. It's also shaming when people snicker.
There's evidence that persistent genital disorder syndrome can be triggered when someone stops taking antidepressants. And, going on antidepressants may help. According to CNN, treatment with the SSRI Tramadol helped one woman.
Electroconvulsive therapy (ECT) is certainly a last resort. It worked for one patient who also had developed bipolar disorder, according to a paper by Joanna B. Korda. In this case, the woman had bipolar disorder and stopped taking antidepressants without tapering off. She got temporary relief from ECT.
I also exchanged email with Lori A. Brotto, an assistant professor, an Associate Professor in the Department of Obstetrics and Gynaecology at the University of British Columbia. She works at the UBC Sexual Health Lab, where she treats persistent genital arousal disorder, as well as other women's sexual health conditions.
She told me,
There is not a single treatment for PGAD, but some women will respond to oral medications like clonazepam, others to a TENS unit (and pelvic floor physiotherapy), and others to psychological strategies and anxiety reduction through mindfulness meditation.
The trickiest part in determining what treatment to pursue with a woman with PGAD is trying to determine, or at least narrow done, the cause for her. If it surfaced during a period of stress or anxiety, I would be more likely to adopt mindfulness meditation. If it arose with the start of or discontinuation of a (psychotropic) medication, then I'd try reversing that effect. If it is associated with restless legs or overactive bladder, I'd suggest a referral to a urogynaecologist to have that treated.
Marcel Waldinger, a Dutch researcher, found a link between PGAD and neuropathic changes in the nerves in the clitoris or surrounding areas. He's found that PGAD is often associated with restless leg syndrome and/or an overactive bladder. Therefore, he's renamed it Restless Genital Syndrome, or ReGS.
Finally, it looks like the Echenberg Institute for Pelvic and Sexual Pain in Bethlehem, Pa., is not only a good information resource but also a place that offers treatment that might be effective. Dr. Echenberg says on his website, that there is effective treatment for PGAD, which he considers a type of neuropathic pain. He writes,
PGAD is treated like other peripheral neuropathies and chronic pelvic pain disorders. Find and treat all “triggers” which may be pudendal neuralgia, IC/PBS and others, treat the pain adequately and always find a qualified pelvic floor physical therapist for the inevitable pelvic floor dysfunction or clenching.
If your PGAD began around the time you stopped taking an antidepressant, it's worth considering asking your doctor to start you on a low dose of a different SSRI. On the other hand, if it began at the same time you started taking an SSRI, you might consider switching to a different one.
There are other treatments to explore here. It's possible that either the Echenberg Institute or the UBC Sexual Health Lab might offer referrals to someone near you. If not, keep looking for a sympathetic and adventurous gynecologist and/or psychiatrist.
The PSAS website has Dutch and English versions. It includes resources and links to forums where you can find support from other women.
It's so frustrating to not be able to find help, I know. The more women demand answers, the sooner medicine will find them.