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7/23/2009 Persistent Genital Arousal Disorder — A Real and Devastating ConditionThere is a condition known as Persistant Genital Arousal Disorder. It is a condition characterized by spontaneous and unwanted genital arousal characterized as tingling, throbbing or pulsating. It is a serious, distressing, and debilitating condition to the women affected by it. The condition is poorly understood, rare, with limited research and studies in the literature. It can affect any women at any age. Some causes:
- Neurologic — central and peripheral 2,3,4
- Pelvic surgery — such as hysterectomy, placement of a sling for stress incontinence
- Pelvic trauma
- Arterio-venous malformation (AVM)2 — where the artery and vein have an abnormal connection
- Medication — abrupt cessation of SSRI’s (such as Paxil, Zoloft etc…)5,6, trazodone7, soy8
- Malignancy9,10
- Psychological
- Idiopathic11 (we just don’t know what caused it)
Part of the problem is that most physicians are not aware that this condition exists resulting in frustration and desperation on the part of the patient. Most patients are told that the sensations they are experiencing are in their head, are thought to be “crazy”, or are thought to be seeking attention or narcotics. To be fair, most physicians just don’t know what to do with these patients. I had one patient visit eleven physicians before she ended up in our emergency department and ended up in my care. At that time she did not know what she had and thought that she may really be going insane. She is now going back to her previous eleven physicians educating them about her condition. I make sure my residents and medical students that rotate through our service know about this condition, so in case they do encounter a patient in the future they will know what to do or where to send the patient. I am putting this in my blog to let patients and other healthcare providers know about this condition. Also, if there is a woman experiencing this condition, she should know that there is such a condition and that there is help for her. References
- Leiblum SR, Nathan SG. Persistenst sexual arousal syndrome: A newly discovered pattern of female sexuality. J Sex Marital Ther 2001;27:365-80.
- Goldstein I, De EJB, Johnson J. Persistent sexual arousal syndrome and clitoral priapism. In: Goldsein I, Meston C, Davis S, Traish A, eds. Women’s sexual function and dysfunction: study, diagnosis and treatment. London: Taylor and Francis; 2006:674-85.
- Yero SA McKinney T, Petrides G, et al. Successful use of electroconvulsive therapy in 2 cases of persistent sexual arousal syndrome and bipolar disorder. J Ect 2006;22:274-5.
- Reading PJ, Will RG. Unwelcome orgasms. Lancet 1997;350:2:743.
- Goldmeier D, Bell C, Richardson D. Withdrawal of selective serotonin reuptake inhibitors (SSRIs) may cause increased atrial natriueretic peptide (ANP) and persistent sexual arousal in women? J Sex Med 2006;3:376.
- Elmore J, Quattlebaum J. Female sexual stimulation during antidepressant treatment. Pharmacotherapy 1997;17:612-6.
- Medina CA. Clitoal priapism: A rare condition presenting as vulvar pain. Obstet Gynecol 2002;100:1089-91.
- Amsterdam A, Abu-Rustum N, Carter J, et al.. Persistent sexual arousal syndrome associated with increased soy intake. J Sex Med 2005;2:338-40.
- Krychman M, Amsterdam A, Carter J, et al. Brain cancer and sexual health: A case report. Palliat Support Care 2005;2:315-9.
- DiGiorgi S, Schanatz PF, Mandavilli S, et al. Transitional cell carcinoma presenting as clitoral priapism. Gynecol Oncol 2004;93:540-2.
- Nappi R, Salenia A, Traish AM et al. Clinical biologic pathophysiologies of women’s sexual dysfunction. J Sex Med 2005;2:4-25
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The following is feedback received for this blog:
I read your information on PGAD in which you mention that there is help for this condition. My 27y year old daughter suffers from this condition which began after she was started on birth control medication in Dec. 2008 and experienced a series of side effects following taking this such as dizziness, panic attacks, anxiety, symptoms that she never had before. The dizziness subsided, but anxiety continued. In July 2009 she began to experience involuntary vaginal pulsating sensations and the rest is history. She has been to many different doctors, without improvement. Do you know of a treatment that can help her?? From your experience what medications, treatments have helped other women. Any suggestions would be greatly appreciated.
- Renee K.
I'm sorry to hear your daughter is struggling with this condition, knowing how challenging it can be. While I can't provide medical advice through this blog, there is treatment available. I would be happy to see your daughter to assess her individual situation and offer treatment, or, depending on your location, point you to a practitioner near her. If you wish, she may contact us to make an appointment at 800-272-3666.
- Margarita Kressin, MD
I recently had a nerve sparing radical prostatectomy, which was quite successful. While the nerves "heal" (6 to 24 months), I'm undergoing a protocol to maintain the tissues that allow me to get an erection (viagra + VED).
I've read one artical about including TRT in this sort of therapy. What are your thoughts on this?
- Tim E.
Interesting she claims "there is help for her" but the minute someone asks what that help is she "can't provide medical advice through this blog". Probably because she hasn't got any worth hearing!!!
There is any kind of medical advice on the net for any condition you want.....this person sounds likes she's dangling a carrot in front of us to get us to make an appointment with her. My guess is she knows no more than any of the dozens of doctors we've all been to.
I find references 2, 3, & 7 particularly interesting. Many of us have been in contact with Goldstein....he doesn't know squat!! And electro~convulsive therapy.....I know 3 of us that tried it....2 of us had absolutely no success at all....NONE!!! But I did get something from the ECT's.....loss of memory....parts of my past are gone to me forever.....and for what.....NOTHING!! The other gal has the same residual effect from the ECT's. Thanks to Goldstein's advice, I know my Mother is dead but I have no recall of the event at all.....I don't remember where she lived....I don't remember the cancer....or if I was there for her!!!! I don't remember the surprise 60th birthday party my kids had for me....the fun they say we had scratching off the 60 lottery tickets my son gave me. I was a Registered Nurse....my first love was OB....I couldn't tell you much of anything about delivering a baby!! I hardly remember being a nurse!!
Reference 7 (as well as 2) refer to 'clitoral priapism'. We just had interesting notes about this recently.
And look at reference 1....she refers to Sandra Leiblum.....Jeannie and I have both met Sandra in person; wonderful lady....she described this syndrome....she named it and has tried to help find a treatment but she makes no claim as to a treatment or cure.
While it's good to see that PGAD is being talked about in the medical community, "- Margarita Kressin, MD" has nothing to say that most of us couldn't have said and probably even better.
- Nancy B.
PLEASE READ PROF. DR. M WALDINGERS RESEARCH ON RESTLESS GENITAL SYNDROME, IT HAS GIVEN ME MORE HOPE THAN I'VE HAD IN 6 YEARS XO.
- Meagan Holliday
Hi,i think people who have this condition should try St-Johns wort vitamin.Becose most people with this condition often haven a low serotonin level.ST Johns wort will boost your serotonin level naturally.Its wort a try... | Posted 11:39 AM
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