I posted once and think I deleted it by mistake....so this may turn up twice.

My husband has had PGAD since 1991 after discontinuing a tricyclic and when the symptoms of a neuro-immune post viral condition took over. It is NOT priapism. It's a sensation of spasms along the pelvic floor, from rectum to urethra. They don't feel like stabbing or burning pain, but like arousal. He tried Paxil which made the PGAD much worse.

Since 1995 he's been forced to stand. Even though he's weakened and fatigued from the illness, the PGAD is unbearable when sitting, and made worse when he lies down. So his daytime lying down is very short, and he sleeps a few hours at night with medication. Often not long enough.

He eats a very bland, inadequate diet....standing up. One by one he cut out foods that caused too much irritation. Meds and supplements make it worse as well.

His illness has alot of complications anyway, but this is the worse. Any stimulation to the pelvic floor nerves, or effort to relieve it will cause the irritation to come back with a worse vengeance.

We saw a pudendal nerve pain specialist. The treatment was steroid shots to the pudendal nerve. My husband can't tolerate the steroid, so he didn't have the procedure done. The thought of having someone massage the area is intolerable to him.

There are days when the irritation/arousal is so bad that it sends electrical spasms up his spine. Most of the time it radiates throughout his body in chills and tension. Something like valium helps some, but it's all he's got and he needs it for sleep, so he's very hesitant to use it. But things get really bad. Nobody can imagine how serious and cruel this condition can be unless they have it or care for someone who does.

Everyone is different, but for many this is a pain disorder. The fact that they can't say it feels like stabbing or burning pain, but feels like arousal, sends the wrong signal. For many it is worse than pain.

You have a right to request pain intervention, if you can tolerate the pain drugs. So far he can't. Neurontin, Lyrica, Tramadol....he's not been able to tolerate any of those, and they in fact make the irritation of the urethral nerves more irritated.

I'm ever hopeful, and ever searching for solutions that others have found. I'm sorry for all the suffering I've read about here. You are not alone. You do have a right to pain intervention if it will help.

I am a male and have this condition or disorder. It began immediately after the onset of chronic schizophrenia with constant auditory and visual hallucinations with two characters (voices) who continuousaly bother me all day long. When the effects of persistent sexual arousal disorder begins, I can literally feel the bacteria or whatever keeps talking to me in my brain, moving around near the center of my brain and then my blood pressure increases. No psychiatrist has ever mentioned the words persistent sexual arousal syndrome or priapism after the statement the voices trying to have sex with me and seems to be unmentioned by a series of doctors who are mostly living in the scientific eighties.

My voices are quite vocal and always make references to themselves when they do anything showing me pictures of them as people when they speak to me. Though it seems they are bacteria that communicate with each other, when I first noticed them, as a dormant schizophrenic they had said "Look at that girl isn't she attractive to which I responded "she is on the tv and the odds of being able to do it with her are low as she is in california. Do not waste my time", to which they immediately acted like they werent there. So I asked them to go out of my head,

They had not realized that they were trapped in my head. They may or maynot have been caused by prenatal influenzae, HIB innoculations, or previous drug use. However the simple fact that the whole sexual nature, birth processes, and mental dysfunctions(of the neurological type) are all undermined by religion, which equates to people who hear voices so highly and life cycle have really grossed me out and I will no longer be involved in any of these activities.

Needless to say, if a doctor does not tell the person how to cope with the effects of their diseases and if they do not know that the problems exist in a belief that they can control an abject twelve cranial nerve infection and some even more noticable disease such as gangrene, if my brain was rotting out of my ear they might actually try to perform some actions to stop the neurological problems, but the statements made by me remain in a now less credible report of schizophrenic people, who do not even know what to call the many problems they have that now grow and grow out of control.

I do not have this disorder but I did just see a TV show about it which resonated with me for various reasons. The more I read about it the more it makes me want to share some recent discoveries I made researching a relatively new tangent of medicine called Functional Medicine. I discovered this approach doing research for addiction and in the process learned about hormones, schizophrenia and many other things.

I won't go into great detail here but if you have this disorder I'd do some research into the work of Dr. Julia Ross, Dr. Charles Gant, and Abraham Hoffer to start with.

I originally became engrossed with neuurotransmitters and amino acid therpies but then found that they are only a component of one of 5 levels of "healing". For more on that watch Dr. Mercola interviewing Dr. Deitrich Klinghard on You Tube.

All of this is a kind of medicine that is just immerging and is not known as main stream. From what I read from the Dr.s on this forum it seems like they might find some of what I'm writing about here as interesting because they seem to be very smart for allopaths if that is what they are. In any event... and totally unrealated I have done an extensive amount of medical research because my daughter has a very rare and poorly understood disease (Lipedema) weight gain which is not effected by diet or excercise and related to hormones.

I also have a son who has problems with addictions which has long been an area of interest and research for me.

You have my empathy for dealing with poorly understood rare conditions which are as persistant. I hope that some of what I've mentioned might help you find some relief for your conditions. I suspect from what little I've read it could.

Bonne Chance ,
Lightwright

Hello, 46yr0old from Canada.Have it since '08.Believe was from Neurontin [6800mg](Wikiped states can be from SSRI withdrawal).In Neurontin w/d, had to put ice packs on genitals. Burning through whole body (seizures).Off all psych drugs,w/d from 3 in last 6yrs.Got ForeignAccentSyndrome Palilalia(vocal tic) I think,simple partial seizures, still. Now, comes and goes.Nervous system arousal colds/viruses/infections,comes with these,1-3weeks.Dies down, get relief time to time. Going back on benzodizepine/antidepressants/neurontin/hormone drugs not option (7th surgery bowel constriction wi endometriosis last year). All have caused current problems.Trying very low-carbohydrate, fasting,closer to ketonic at times diet (helps control seizures/nerv.system arousal)Notice after episodes, FAS more pronounced. Still working on it; know you feel insane!