Editorial Note: Following on from The Princess and the Frozen Pea, this is a second post in a PGAD series. There will be one more on the range of conditions mentioned here that are often linked to PGAD – interstitial cystitis, pelvic floor dysnergia, prostatitis and others. See also PGAD Video
Persistent Genital Arousal Disorder (PGAD) has been associated with SSRI use and/or discontinuation in some individuals. For example, SSRI use was noted as a trigger for symptoms onset in 20% (n= 23) of Jackowich et al’s sample (2017).
Waldinger & Schweitzer note 11% of their sample of 18 women report an onset associated with SSRI use or withdrawal (2009).
Leiblum & Goldmeier report five case studies of women who had their onset of PGAD on or while discontinuing SSRI’s (2008). Other case reports exist (Freed (2005); Goldmeier & Leiblum (2006); Goldmeier, Bell, Richardson (2006); Mahoney & Zarate (2007).
PGAD is often comorbid with other medical conditions and pelvic/urogenital conditions (Jackowich et al, 2017). For example, Jackowich et al. report the prevalence of the following conditions in their sample: irritable bowel syndrome (36.5%, n= 42), pudendal neuralgia (16.5%, n= 19), overactive bladder (16.5%, n= 19), interstitial cystitis (14.8%, n= 17), and generalized vulvodynia (13.9%, n=16).
Waldinger (2009) report comorbidity between PGAD (referred to as Restless Genital Syndrome in his article), overactive bladder, and restless leg disorder.
The relationship between SSRI use and/or discontinuation and other pelvic/urogenital conditions besides PGAD has not reported in the literature. However, RxISK has case reports of individuals, such as myself, who developed these conditions in this context. I developed pudendal neuralgia and interstitial cystitis when withdrawing from an SSRI. We need to get case reports published.
Frying Pan or Fire
Pretty well everyone with PGAD and/or with associated pelvic/urogenital conditions finds themselves in a difficult situation when it comes to treatment. These conditions are often hard to treat and a lot of trial and error is involved.
One of the first line treatments for PGAD is SSRI’s, SNRI’S, or tricyclics, as well as anticonvulsants such as gabapentin or pregabalin. The last thing someone who has a drug-induced injury is likely to want to do is take more psychotropic medication. It may also not be feasible since the individual may not longer be able to tolerate these medications or adjustments to them (i.e. they now invoke akathisia).
The following additional medications have also been used for PGAD: leuprolide, vasopressin, Chantix, Requip and other dopamine agonists, beta-blockers, antipsychotics, mood stabilizers and benzodiazepines.
Topical lidocaine gets tried. Other medications can be applied topically, made at a compounding pharmacy.
As an aside, in addition to SSRI induced PGAD, some individuals develop PGAD via other routes, proposed to be neurological, vascular, pharmacological (other than SSRI’s), and hormonal., which (partially) explains the range of medications tried.
Some lower-risk options to consider may be applying ice (See the Princess and the Frozen Pea). Though, relief is very short-lived. Lifestyle modifications can include avoiding sitting (difficult to you also have medication-induced nerve damage to the feet like I do) and other movements that are triggering, avoiding tight clothes and underwear, and using a pudendal sitting cushion.
When the etiology is hormonally related, some people have figured and find improvement by reducing soy intake.
Pelvic floor physical therapy is another low-risk option for secondary muscle tension or if the pudendal nerve is being compressed by the muscles. Some find some relief with using a transcutaneous electrical nerve stimulation (TENS) unit applied to the sacral area. (If anyone finds an alternative site to place the electrodes for the TENS, that would be helpful to know).
If these lower risk approaches aren’t helpful and one does not or cannot embark on oral medications outlined above, one may try pudendal nerve blocks. While there is much to be learned about the mechanisms of PGAD, Waldinger (2009) offers compelling evidence that PGAD is both associated with pelvic varices and also with sensory neuropathy of the pudendal nerve and the dorsal nerve of the clitoris. Pudendal blocks can be conducted manually, as well as with ultra-sound, X-ray, or CT guidance. CT guidance is considered the gold-standard due to accuracy of delivery of the lidocaine and steroid injected.
Results are variable: relief may last as little as a few hours or could span weeks or months. A series of blocks is often recommended though there are a finite number of times one can do the block, as the risk for (further) damaging the nerve increases. It’s also possible to have adverse events from completing a single block. If pudendal blocks are successful but relief is not long-term, some consider radiofrequency ablation of the pudendal nerve or sacral or pudendal neuromodulation.
Implanting a neuromodulation device involves two surgeries (one to implant the leads temporally for a trial period and one to permanently implant the leads and device). Additional surgeries are required to replace the batteries (i.e. about every 5 years depending on the device).
If entrapment of the pudendal nerve is believed to be causing the PGAD, some elect for surgical release of the pudendal nerve entrapment. This surgery has a long recovery time with many risks. There are some case reports that botox is helpful for individuals with PGAD by blocking the dorsal nerve of the clitoris.
If the pudendal nerve block does not produce relief, one may be left hunting blindly in the dark for which nerve or nerves are involved. There are other blocks that could be tried but they can only be done so often if a steroid is used. If you try pudendal nerve block, it would be helpful to know which block(s) helped, if any.
Additional treatments for PGAD includes clitoridectomy and ECT, which appear too radical to many, especially those previously harmed by treatment. Clitoridectomy also does not eliminate all symptoms. ECT is used based on the theory that it alters the serotonin and dopamine systems that create PGAD symptoms.
If pain is part of the presentation and/or you have pudendal neuralgia, some have resorted to opioids. Ketamine, baclofen, or even an intrathecal pain pump have been used.
We Deserve Better
PGAD and associated pelvic and urogenital conditions can be absolutely debilitating not only in enduring unpleasant sensory experiences and/or pain but the impact these symptoms have on functionality at work, school, and in relationships.
SSRI induced harms such as PGAD bring people to their knees. They are left wary of more harm from treatment but desperate for relief. We need more options. Help us find a cure for PGAD and associated conditions.
The best option out there should not have to be learn to live with it. Having tried many treatments and taken more risks that I would have liked, that’s what I’m doing for now.
Katie B-T: See previous post Girl on a Hot Tin Roof
Goldmeier, D, Bell, C & Richardson, D (2006). Withdrawal of selective serotonin reuptake inhibitors (SSRIs) may cause increased atrial natriuretic peptide (ANP) and persistent sexual arousal in women? Journal of Sexual Medicine, 3, 376.
Goldmeier D, & Leiblum, SR (2006). Persistent genital arousal in women—A new syndrome entity. International Journal of STD & AIDS, 17, 215-216.
Freed,L .(2005). Persistent sexual arousal syndrome (letter). Journal of Sexual Medicine, 2,743.
Leiblum, SR, & Goldmeier, D (2008). Persistent genital arousal disorder in women: Case reports of association with anti-depressant usage and withdrawal. Journal of Sex & Marital Therapy, 34, 150–159.
Jackowich, R, Pink, L, Gordon, A, Poirier, E, & Pukall, CF (2017). Symptom characteristics and medical history of an online sample of women who experience symptoms of persistent genital arousal. Journal of Sex & Martial Thearpy, 0, 1-16.
Mahoney, S & Zarate, C (2007). Persistent sexual arousal syndrome: A case report and review of the literature. Journal of Sex Marital Therapy, 33, 65–71.
Waldinger, MD & Schweitzer, D, (2009). Persistent genital arousal disorder in 18 dutch women: Part II-A Syndrome clustered with restless legs and overactive bladder. Journal of Sexual Medicine, 6, 482-497.
Waldinger, MD & Schweitzer (2010). New insights into restless genital syndrome: Static mechanical hyperesthesia and neuropathy of the nervus dorsalis clitoridis. Journal of Sexual Medicine, 6, 2778-2787.