note that quotations are in italics.
update 14 Sept 2016 firstname.lastname@example.org having just received a sorrowful posting from Diana below, I now discover that there are a number of similar complaints that I had missed and not posted; so I have now posted them under comments. This condition is such a nightmare for sufferers that I post them as you submitted them, with your name and email if thats how you sent them. I can delete your contacts if you like, but the more you sufferers communicate and exchange ideas the better for sufferers.
Sufferers must surely have tried some nonirritating local anaesthetic cream, or eg virgin coconut oil, or simply massage for relief.
given the risk of even low strength estrogen cream being well absorbed from mucous membranes more than from skin, and thus (altho beneficial for brains, bones, skin, heart etc) potentially adverse for endometrium, breast, and many other target organs, we leave the vascular engorger estrogen as the last resort- first try anything but topical sex hormonesl then if still desperate, sparingly up to 3% progesterone cream; testosterone cream is also healing, but virilizing ie not to be used if arousal, clitoromegally, breast proliferation is not wanted.
Since my 2009 review, there are some 15 new abstracts in English on Pubmed from USA, Canada, Europe, Israel and Japanese groups. There dont seem to have been any major breakthroughs in management of this rare and distressing disorder. Antiepileptics may be promising- like cannabinoid oil , and the ketogenic diet are, in epilepsy.
Since the brain responds so well to more natural dietary fats (eg animal triglycerides, MCT- coconut oil, fish oil ie EPA, DHA) and withdrawal of excitogenic glucose loading that most people indulge in, and so many patients today are overweight with estrogenizing glucose insulin resistance, in general I encourage patients to think of epilepsy let alone memory loss (including Alzheimers) and mood disorders as brain diabetes, glucose toxicity with deprivation of good needed dietary fats; and thus to try Banting diet rather than the populist fast food industry-promoted disasterous high carbs low fat low cholesterol fad of the past 50 years. This simple dietary advice is at worst harmless distraction, and generally beneficial for the unhappy women with multifactorial PGAD,
Given their ubiquitous benefits in so many disorders, harmless trial is warranted with: vigorous vitamin D3 replacement to the commonly optimal level around 100ng/ml (which may require the average safe 10 000 iu vit D3.day, but perhaps 10 times that with unpredictable vitamin D resistance) seems worth considering for this rare but extremely distressing disorder ie PGAD;
lowdose naltrexone LDN;
hypnotherapy has been reported helpful, but potentially hazardous.
If not obviously due to psychiatric, or tumour eg Tarlov cysts, or pelvic venous problems, PGAD may be likened to variant true epilepsy or the only somewhat less common PNES syndrome – psychogenic non-epileptic seizure syndrome – that like PGAD has been increasingly recognized only this millennium, and which is overall even more of a dis-ease and psychiatric problem that true epileptic diseases, .
abstracted English refs published since 2009 review:
Sex Med Rev. 2016 Jul 22. pii: S2050-0521(16)30024-5. Persistent Genital Arousal Disorder: A Review of Its Conceptualizations, Potential Origins, Impact, and Treatment.Jackowich RA1, Pink L2, Gordon A2, Pukall CF3.1Department of Psychology, Queen’s University, Kingston, ON, Canada;Wasser Pain Management Centre, Mount Sinai Hospital, Toronto, , Persistent genital arousal disorder (PGAD) is a condition characterized by symptoms of physiologic (typically genital) sexual arousal in the absence of perceived subjective sexual arousal. The physiologic arousal can last hours or days, or it can occur constantly, and it does not typically remit after orgasm(s). The symptoms are usually described as distressing, intrusive, and unwanted..Much of the research on the potential etiologies and treatments of PGAD is published in the form of case studies. Several etiologies of PGAD have been proposed; however, a cause or causes have not been confirmed. A range of treatments has been explored primarily in case studies, from electroconvulsive therapy to oral medication, with variable success rates. Psychologically based treatments have been suggested but have yet to be evaluated. Online surveys have found initial evidence supporting the negative impact of PGAD on mental health and sexual functioning; however, more research is needed in this area.Although PGAD was first conceptualized 15 years ago, it remains a very under-researched condition. Currently, little is known about its biopsychosocial correlates, etiologies, or successful treatments. Future research directions are identified. \
J Sex Med. 2014 Jan;11(1):136-9. A periclitoral mass as a cause of persistent genital arousal disorder. Bedell S1, Goldstein AT, Burrows L.New York University describe a woman who developed PGAD in association with a periclitoral mass, a potential physical cause of the disorder that has not been previously described in the medical literature.A postmenopausal woman presented with 6 months of persistent, unrelenting genital arousal and clitoral pain that was unrelated to sexual stimuli. Careful examination revealed a tender, firm, mobile, left-sided mass that appeared to compress the dorsal nerve of the clitoris.Complete excision of the mass resulted in full resolution of her symptoms over several weeks. Localized causes of persistent genital arousal, though rare, should be included in the differential diagnosis PGAD as detection and treatment can lead to a complete recovery.
J Sex Med. 2013 Jun;10(6):1549-58. Cognitive and emotional determinants characterizing women with persistent genital arousal disorder. Carvalho J1, Veríssimo A, Nobre PJ. Porto, Porto, Portugal. email@example.com The aim of this study was to characterize the cognitive and emotional style of women reporting PGAD. More precisely, the content of sexual beliefs, thoughts, and emotions during sexual intercourse was explored.Forty-three women presenting PGAD and 42 controls responded to a web survey. This study was cross-cultural in nature and women worldwide (over 18 years old) were asked to participate. After controlling for sociodemographic characteristics and psychopathology, findings showed that women reporting PGAD symptoms presented significantly more dysfunctional sexual beliefs (e.g., sexual conservatism, sexual desire as a sin), as well as more negative thoughts (e.g., thoughts of sexual abuse and of lack of partner’s affection) and dysfunctional affective states (more negative and less positive affect) during sexual activity than non-PGAD women. Notwithstanding the impact of neurophysiological determinants in the etiology of this syndrome, results support the psychological conceptualization of PGAD and highlight the role of cognitive-behavioral therapy (CBT) for PGAD symptomatology. More specifically, cognitive and behavioral strategies would be aimed at targeting maladaptive sexual beliefs and thoughts, as well as regulating negative affective states resulting from a dysfunctional cognitive style regarding sexuality. In all, CBT in association with a medical/pharmacological approach, could be clinically relevant in the management of PGAD.\
J Sex Med. 2013 Feb;10(2):439-501 Persistent genital arousal disorder: characterization, etiology, and management. Facelle TM1, Sadeghi-Nejad H, Goldmeier D.New Jersey Medical School-Surgery-Urology, Newark, NJ 07103, USA.. Since its first description in 2001, many potential etiologies and management strategies have been suggested. To review the literature on PGAD, identify possible causes of the disorder, and provide approaches to the assessment and treatment of the disorder based on the authors’ experience and recent literature.PubMed searches through July 2012 were conducted to identify articles relevant to persistent sexual arousal syndrome and PGAD. PGAD is characterized by persistent sensations of genital arousal in the absence of sexual stimulation or emotion, which are considered unwanted and cause the patient at least moderate distress. The proposed etiologies of PGAD are plentiful and may involve a range of psychologic, pharmacologic, neurologic, and vascular causes. PGAD has been associated with other conditions including overactive bladder and restless leg syndrome. Assessment should include a through history and physical exam and tailored radiologic studies. Treatment should be aimed at reversible causes, whether physiologic or pharmacologic. All patients should be considered for cognitive therapy including mindfullness meditation and acceptance therapy.
Neuroscience. 2010 Apr 28;167(1):88-96. Persistent genital arousal disorder associated with functional hyperconnectivity of an epileptic focus. Anzellotti F1, Franciotti R, Bonanni L, Tamburro G, Perrucci MG, Thomas A, Pizzella V, Romani GL, Onofrj M. d’Annunzio University, Chieti, Italy.Persistent Genital Arousal Disorder (PGAD) refers to the experience of persistent sensations of genital arousal that are felt to be unprovoked, intrusive and unrelieved by one or several orgasms. It is often mistaken for hypersexuality since PGAD often results in a high frequency of sexual behaviour. At present little is known with certainty about the etiology of this condition. We described a woman with typical PGAD symptoms and orgasmic seizures that we found to be related to a specific epileptic focus. We performed a EEG/MEG and fMRI spontaneous activity study during genital arousal symptoms and after the chronic administration of 300 mg/day of topiramate. From MEG data an epileptic focus was localized in the left posterior insular gyrus (LPIG). FMRI data evidenced that sexual excitation symptoms with PGAD could be correlated with an increased functional connectivity (FC) between different brain areas: LPIG (epileptic focus), left middle frontal gyrus, left inferior and superior temporal gyrus and left inferior parietal lobe. The reduction of the FC observed after antiepileptic therapy was more marked in the left than in the right hemisphere in agreement with the lateralization identified by MEG results. Treatment completely abolished PGAD symptoms and functional hyperconnectivity. The functional hyperconnectivity found in the neuronal network including the epileptic focus could suggest a possible central mechanism for PGAD.
J Sex Med. 2009 Oct;6(10):2896-900. Persistent genital arousal disorder and trazodone. Morphometric and vascular modifications of the clitoris. A case report. Battaglia C1, Venturoli S. University of Bologna, Italy Persistent genital arousal disorder (PGAD) is an unwanted genital arousal which occurs in absence of sexual interest and desire.A young (29 years old), eumenorrheic (menstrual cycle of >25 and <35 days) woman suffered of unwanted genital arousal and uncontrollable orgasms. In the past, the patient undertook trazodone treatment. ultrasonographic and color Doppler analyses of the clitoral structures prior and after an unwanted orgasm- The clitoral volume was 1.33 mL before the orgasm and 1.36 mL and 1.33 mL, respectively after 1 minute and 15 minutes from the orgasm. The Pulsatility Index (PI) of the dorsal clitoral artery was 1.05 before the orgasm, lower after 1 minute (PI = 0.82) and 15 minutes (PI = 0.85) from the orgasm.A subtle and intermittent clitoral priapism may favor the feeling of arousal persistence and elicit unbidden and unwelcomed orgasms.
Restless Legs (Ekbom’s) Syndrome, common with iron deficiency, diabetes, kidney failure etc, is bad enough. But combination with restless genitals is an awful prospect. Normally it is men who famously have restless genitals that cannot be sated…
Sandra Leiblum first described persistent genital arousal disorder in women in 2001, and since then has reported on some 171 cases in New Jersey.
restless leg syndrome and/or an overactive bladder, urethral hypersensitivity; involuntary genital arousal with unprovoked orgasms, onset often during early menopause, as well as the 5 diagnostic criteria of persistent genital arousal disorder (PGAD) – :
- Persists for an extended period of time (hours, days, and/or months)
- Does not go away after 1 or more orgasms
- Is unrelated to subjective feelings of sexual desire
- Feels intrusive and unwanted; and
- Causes distress. They find it is is “highly associated with pelvic varices (in all on pelvic MRI scan) and with mechanical sensory neuropathy of the dorsal clitoral and pudendal nerves, whose symptoms are suggestive for small fiber neuropathy (SFN). Although all the women reported varying degrees of social withdrawal, desperate feelings, dysthymia, agitation, or depressed mood directly caused by persistent unwanted genital sensations, none were known to have previous psychiatric disorders.”
Leiblum discriminates such disorder from Female Sexual Arousal Disorder on the basis that “FSAD women displayed the greatest problems in desire, arousal, lubrication, orgasm, and pain while women with PGAD reported somewhat more desire than the control group but did not meet the cutoff score for sexual dysfunction.
It is strange that no other gyne or sexual health clinics in the world have so far reported clusters of such patients as have these two clinics in New Jersey and Den Hage .
Leiblum ea could elicit only perhaps 1 such case (ie 1%) at a sexual health clinic in London UK. From an Internet survey she reported in 2007 that in the 50% of cases who had all 5 diagnostic criteria, “ they were significantly more likely to be depressed (55% vs. 38% who did not have all 5) and to report panic attacks (31.6% vs. 14.6%). They were more anxious and more likely to monitor their physical sensations. Both groups reported high rates of childhood and adult sexual abuse, although the PGA women reported a higher prevalence of sexual victimization. They were significantly more likely to endorse negative feelings about their genital sensations and also more likely to complain of chronic fatigue syndrome than women without the condition (10% vs. 0%). There were no significant relationships with pharmacologic agents and symptoms. It is hypothesized that for a subset of women, psychological factors, namely anxiety, reinforce exacerbate and maintain PGAD.”
But they have anything but nymphomania (origin 1775: Oxford English dictionary), although they may be so mislabeled ie pseudo-nymhomania (Fenichel 1933). Kinsey’s 1948 book on Female Sexual Responsiveness did not even mention, index nymphomania. Kuperman 1961 in his chapter on Sex Hormones unknowingly implies the difference between nymphomania and pseudonymphomania: “nymphomania may occasionally be treated successfully and paradoxically with androgens.. these patients who respond to androgens by a decrease in desire for frequent stimulation are probably those who have been unable to achieve satisfying orgasm, which androgen provides.. in other such patients, progesterone suppositories as an antiandrogen agent may diminish unwanted desire and erotic tendencies. ”
Stuckey ea describe a single case who was cured by coil embolization of pelvic varicose veins- a more realistic therapy than embolization of the clitoris to infarct it, or amputation as was practiced by eminent UK physicians in Victorian times.. .
Women with RGS/PGAS do not have either a central arousal disorder or craving for love/attention, but vascular- neuropathic clitoral engorgement; which topical progesterone or anaesthetic eg lignocaine cream may relieve by treating the endpoint, not the cause.
If varices are the strong associate, perhaps it is worth considering the pathophysiology of varices, which are apparently often associated with sensory neuropathy, presumably through swelling pressure on nerves – local varicose oedema. Vercellini ea note that pelvic varices are one common cause of pelvic pain in women.
Increased pressure and thrombosis aside, varicose veins are strongly associated with female gender, ie with testosterone:estrogen level about 1/200th of that in middle-aged men, and loss of collagen (ie ascorbic acid) in smooth muscle and extracellular matrix.
Higher female estrogen is associated with stronger bones, and oedema, stress incontinence and vascular relaxation; but it notoriously contributes nothing to muscle growth and strength except in the unique uterus itself – only estrogen grows the uterus. Only androgen grows body muscle mass and strength. From early menopause, testosterone falls gradually; but especially with fattening, estradiol falls gradually but fat-derived estrone increases, reversing the premenopausal estradiol>estrone dominance. Hence across midlife women mostly shrink their skeletons and lean mass but expand their fat mass steadily- ie couch potatoes develop increasing fatness frailty.
Hence (compression stockings for varicose legs aside), especially in women, apart from raising the legs, the foot of the bed at night, we commonly see varicose vein discomfort and distension in the legs and anus (piles) relieved by a few grams of bioflavinoid – ascorbic acid blend a day. A topical cream may augment this.
And as regards neuropathy of the legs, apart from GABA plus 5HTP for nonspecific relief, we often see significant improvement with a vigorous blend of nerve nutrients including vitamins BCo, zinc and alphalipoic acid.
It may add to understanding of this awful problem if other sufferers contribute their experience. Anonymity will obviously be preserved if their comments are published.